tag:blogger.com,1999:blog-32684412320993076522024-02-19T10:04:04.121+00:00Little Mama MurphyMostly this is me, rambling about family life with a 'medical mystery', an undiagnosed child; the good, the bad and the downright chaotic.Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.comBlogger157125tag:blogger.com,1999:blog-3268441232099307652.post-42887621247552642602021-04-30T00:34:00.000+01:002021-04-30T00:34:06.134+01:00Undiagnosed Children's Day 2021 - Thanks for the Memories<p> </p><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNtc3LQkGyy9Yzj2iI0f7ui6rNsIjPVFqGyEJOCAJk2PVHnSp2VSpuVNkvfNTK8HPw3y1Wi8pCwEUhrQxvchZqldxcKSRErQ6qKTS6e_CUcgSB3LrbZTtFWHebu25FRguzCOI55cvyQTo/s1200/ucd2021.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNtc3LQkGyy9Yzj2iI0f7ui6rNsIjPVFqGyEJOCAJk2PVHnSp2VSpuVNkvfNTK8HPw3y1Wi8pCwEUhrQxvchZqldxcKSRErQ6qKTS6e_CUcgSB3LrbZTtFWHebu25FRguzCOI55cvyQTo/s320/ucd2021.jpg" /></a></div><br /><p></p><p><span style="font-family: "Century Gothic", sans-serif; font-size: 12pt;"><br /></span></p><p><span style="font-family: "Century Gothic", sans-serif; font-size: 12pt;">Each year 6000 children in the UK are born with a genetic
syndrome so rare that it is likely to remain undiagnosed.</span><span style="font-family: "Century Gothic", sans-serif; font-size: 12pt;"> </span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;">In 2010, my second born son, Hugh, was one of them.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;">Back then, I didn’t know undiagnosed genetic
conditions existed.<span style="mso-spacerun: yes;"> </span>Back then I was naïve
enough to assume that if a child presented with physical or learning difficulties,
they would be seen by a doctor who would refer them for further testing.<span style="mso-spacerun: yes;"> </span>Back then, I assumed those tests would reveal
an answer, a cause, a diagnosis.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;">But we went to the doctors, we had the tests and
the only answer we received was a great, big <i>‘<b>Don’t Know</b> (but it’s definitely
a genetic syndrome of some sort)’.</i><o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;">Where were my tribe then?<span style="mso-spacerun: yes;"> </span>My support group?<span style="mso-spacerun: yes;"> </span>My information leaflets?<span style="mso-spacerun: yes;"> </span>Where should I look for support and guidance?<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;">We were lost, and alone.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;">30<sup>th</sup> April is Undiagnosed Children’s
Awareness Day.<span style="mso-spacerun: yes;"> </span>And this year it’s a big
one as <a href="https://www.undiagnosed.org.uk/" target="_blank">SWAN UK (Syndromes Without a Name)</a> is celebrating its 10<sup>th</sup>
birthday!<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;">SWAN UK sprung to life as a Facebook group for parents
and carers of undiagnosed children in 2011.<span style="mso-spacerun: yes;">
</span>We were there! Right at the beginning!<span style="mso-spacerun: yes;">
</span>I was member number 10, I think.<span style="mso-spacerun: yes;"> </span>We
were a small, tight-knit bunch of families, spread throughout the UK with
children so diverse and with such varying needs it was hard to see what we had
in common.<span style="mso-spacerun: yes;"> </span>Yet what united us was the
very thing that excluded us from so many other sources of support and
information: our lack of diagnosis.<span style="mso-spacerun: yes;"> </span>Online
initially and then face to face our friendships grew, the care and understanding
I received from those like-minded mothers was immeasurable.<span style="mso-spacerun: yes;"> </span>And those bonds of friendship have stood the
test of time.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;">Diagnoses have come to some of our group.<span style="mso-spacerun: yes;"> </span>Mostly rare and ultra-rare conditions.<span style="mso-spacerun: yes;"> </span>Hugh now has a diagnosis of <a href="https://foxg1.uk/" target="_blank">FOXG1 syndrome</a> of
which there are around 700 diagnosed cases worldwide.<span style="mso-spacerun: yes;"> </span>Others have been diagnosed with conditions
where there are less than 10!<span style="mso-spacerun: yes;"> </span>In fact,
Hugh’s diagnosis is thanks to SWAN UK – it was following one of their twitter
takeovers, which I had hosted, that I was contacted by a genetic counsellor to
take part in a research study in America, where he was eventually diagnosed with
FOXG1 at 8 years old.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;">SWAN UK, and the friends I made through them,
supported me through some of the toughest times of my life and have been responsible
for so many wonderful memories and fantastic opportunities.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;">Here’s just a snapshot of some of them:<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p> </o:p></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI3xRb__C8k4obPARNkkmEJ-TkgoeujDSm-Wf5uu_PXyTJRgx29HhoNmL2WLfrf9TFzF4ys3C6YxD56_ybYCDrqRGxdpklPxpr8RYdBo2oaboDYlqZsV5S2bsq4stCUQhw9dsJNUibU1c/s474/ucd+fundays.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="474" data-original-width="474" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI3xRb__C8k4obPARNkkmEJ-TkgoeujDSm-Wf5uu_PXyTJRgx29HhoNmL2WLfrf9TFzF4ys3C6YxD56_ybYCDrqRGxdpklPxpr8RYdBo2oaboDYlqZsV5S2bsq4stCUQhw9dsJNUibU1c/s320/ucd+fundays.png" /></a></div><br />L-R:<p></p><p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p>1) Our first family fun day at Thames Valley Adventure Playground (TVAP) in 2011. It was wonderful to meet families like ours in 'real life'.</o:p></span></p><p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p>2) Hugh dressed as a famous detective for Undiagnosed Children's Day (UCD) in 2014. Can you guess who it is? </o:p></span></p><p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p>3) Hugh and I at a family fun day in SNAP Cannock in 2014</o:p></span></p><p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p>4) Hugh having his very first go on a trike at TVAP. Yes, I did cry!</o:p></span></p><p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p>5) Another family day at SNAP in 2013</o:p></span></p><p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p>6) Celebrating Undiagnosed Children's Day at Birmingham Children's hospital in 2016.</o:p></span></p><p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p><br /></o:p></span></p><p class="MsoNormal"><span style="line-height: 107%;"></span></p><div class="separator" style="clear: both; font-family: "Century Gothic", sans-serif; font-size: 12pt; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRytvT-0ZJvSF-V77-dEHx_wDfUCy0fADJjGTmVganiWSqAoMtH2vrgvBG1kEuXyshHDl_dfVr1diqGHzzNO76Z73exinkmuaGxsVLaWQg_kH0wRJTz1HnEY6rbGCOAMPAryXhcUJ-7VM/s499/12540837_10153264445092341_463264848539427964_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="391" data-original-width="499" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRytvT-0ZJvSF-V77-dEHx_wDfUCy0fADJjGTmVganiWSqAoMtH2vrgvBG1kEuXyshHDl_dfVr1diqGHzzNO76Z73exinkmuaGxsVLaWQg_kH0wRJTz1HnEY6rbGCOAMPAryXhcUJ-7VM/s320/12540837_10153264445092341_463264848539427964_n.jpg" width="320" /></a></div><div style="font-family: "Century Gothic", sans-serif; font-size: 12pt; text-align: center;"><span style="font-size: 12pt;">Meeting Lauren from SWAN UK in 2012.</span></div><div style="font-family: "Century Gothic", sans-serif; font-size: 12pt; text-align: center;"><span style="font-size: 12pt;"><br /></span></div><div style="font-family: "Century Gothic", sans-serif; font-size: 12pt; text-align: center;"><span style="font-size: 12pt;"><br /></span></div><div style="font-family: "Century Gothic", sans-serif; font-size: 12pt; text-align: center;"><span style="font-size: 12pt;"><br /></span></div><div style="font-family: "Century Gothic", sans-serif; font-size: 12pt; text-align: center;"><span style="font-size: 12pt;"><br /></span></div><div style="font-family: "Century Gothic", sans-serif; font-size: 12pt; text-align: center;"><span style="font-size: 12pt;"><br /></span></div><div style="font-family: "Century Gothic", sans-serif; font-size: 12pt; text-align: center;"><span style="font-size: 12pt;"><br /></span></div><div style="font-family: "Century Gothic", sans-serif; font-size: 12pt; text-align: center;"><span style="font-size: 12pt;"><br /></span></div><div style="font-family: "Century Gothic", sans-serif; font-size: 12pt; text-align: center;"><span style="font-size: 12pt;"><br /></span></div><div style="text-align: center;"><div class="separator" style="clear: both; font-family: "Century Gothic", sans-serif; font-size: 12pt; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUqpvsZQJ56MbvbMh8ZSpU2zZeKJ7tkABPMdORkdz6pFbK4Wio51PBL0v6NydWj-zQrD7c81HAWKoeBPz-7sye17hVSIbnyosrVbf2XZP2IqfyGLmCdid0wB7q3ZStSFt0Xwa-JWX3sSI/s475/baps.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="475" data-original-width="473" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUqpvsZQJ56MbvbMh8ZSpU2zZeKJ7tkABPMdORkdz6pFbK4Wio51PBL0v6NydWj-zQrD7c81HAWKoeBPz-7sye17hVSIbnyosrVbf2XZP2IqfyGLmCdid0wB7q3ZStSFt0Xwa-JWX3sSI/s320/baps.png" /></a></div><br /><span style="font-family: Century Gothic, sans-serif;"><span style="font-size: 12pt;">Winning a blogging award and meeting Gethin Jones (and he added us {that's me and my mum} to his </span>Instagram<span style="font-size: 12pt;"> stories). I only started blogging because of SWAN UK.</span></span></div><div style="font-family: "Century Gothic", sans-serif; font-size: 12pt; text-align: center;">At the All Party Parliamentary Group for Rare and Undiagnosed Conditions at the Houses of Parliament with some pretty fabulous women - L_R: Tania from <a href="https://www.specialneedsjungle.com/" target="_blank">Special Needs Jungle</a>, (Me), Vaila from <a href="http://www.theinclusivehome.co.uk/" target="_blank">The Inclusive Home </a>and Alison from <a href="http://complicatedgorgeousness.co.uk/" target="_blank">Complicated Gorgeousness</a>. </div><div style="font-family: "Century Gothic", sans-serif; font-size: 12pt; text-align: center;"><br /></div><div style="font-family: "Century Gothic", sans-serif; font-size: 12pt; text-align: center;"><br /></div><div style="font-family: "Century Gothic", sans-serif; font-size: 12pt; text-align: center;"><br /></div><div style="font-family: "Century Gothic", sans-serif; font-size: 12pt; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpmvnmNk7o5DW0kZJTBvugQfuROIWvR7TB_hhyD3d-WS-oany9i-Y8YRmbZOGkDg6t6sQH3dsEa-kdsxkku2PWpTJoUlthg9XuyBNNI-21wYCua4jimWxA5G8AQbL48lZfYwWWgfN50tA/s960/52759651_10155881857557341_6114862273526759424_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpmvnmNk7o5DW0kZJTBvugQfuROIWvR7TB_hhyD3d-WS-oany9i-Y8YRmbZOGkDg6t6sQH3dsEa-kdsxkku2PWpTJoUlthg9XuyBNNI-21wYCua4jimWxA5G8AQbL48lZfYwWWgfN50tA/s320/52759651_10155881857557341_6114862273526759424_n.jpg" /></a></div><o:p style="font-family: "Century Gothic", sans-serif; font-size: 12pt;"><br />Balloons! Hugh loves a balloon and has received balloons several times from SWAN UK when he has been ill or been in hospital. It has always cheered him up.</o:p><p></p><p class="MsoNormal"><span style="line-height: 107%;"><o:p style="font-family: "Century Gothic", sans-serif; font-size: 12pt;"><br /></o:p></span></p><p class="MsoNormal"><span style="line-height: 107%;"><o:p style="font-family: "Century Gothic", sans-serif; font-size: 12pt;"><br /></o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;">Whilst Hugh is no longer undiagnosed, SWAN UK is
still, and always will be, a big and important part of our lives.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;">So please join me in wishing SWAN UK a happy
#BigBirthday this Undiagnosed Children’s Day.<span style="mso-spacerun: yes;">
</span>And<a href="https://www.undiagnosed.org.uk/donate" target="_blank"> please donate</a>, if you can, to help them support more families like
ours.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p> </o:p></span></p>
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<p class="MsoNormal"><span style="font-family: "Century Gothic",sans-serif; font-size: 12.0pt; line-height: 107%;"><o:p> </o:p></span></p>Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com0tag:blogger.com,1999:blog-3268441232099307652.post-83031327960945925302020-06-28T22:44:00.001+01:002020-06-28T22:45:33.579+01:00Children's Hospice Week 2020<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpow6nNopi0oEoFcEAMIJJNdidAEB0HT3TJNPEoSfPfcoCwVYxaPfRpM-n_NEI_9pbdxgFoiLouxbtRd23y9o4Qx1hmlvYi1ZzUpcjkG9hBArjfyqkE7zIRSIF1gIH8cmG9zvpxavHafU/s4256/Acorns+Hugh+310120-54.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2832" data-original-width="4256" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpow6nNopi0oEoFcEAMIJJNdidAEB0HT3TJNPEoSfPfcoCwVYxaPfRpM-n_NEI_9pbdxgFoiLouxbtRd23y9o4Qx1hmlvYi1ZzUpcjkG9hBArjfyqkE7zIRSIF1gIH8cmG9zvpxavHafU/s320/Acorns+Hugh+310120-54.jpg" width="320" /></a></div><div><br /></div><div><br /></div>This week is #ChildrensHospiceWeek (22nd-28th June).<div><br /></div><div>When Hugh was 16 months old he was assigned a palliative care nurse and it was suggested we access support from the local hospice - <a href="https://www.acorns.org.uk/" target="_blank">Acorns Children's Hospice</a> . I was horrified - a hospice was no place for a baby .. my baby!</div><div><br /></div><div>Head firmly buried in the sand, I avoided the topic for some time, but eventually, the realisation that Hugh's big brother Sean was missing out on a childhood while his parents were preoccupied with keeping his baby brother alive, prompted me to visit the hospice ad accept the help we so desperately needed. </div><div><br /></div><div>Far from being hospital-like and depressing it was warm and welcoming. And we've been an 'Acorns Family' ever since.</div><div><br /></div><div>Over the years the support has differed according to our needs; </div><div>We've had day care, overnight stays for the whole family and overnight care just for Hugh</div><div>Sibling support groups for Sean where he's met and made friends with children with similar home situations - they've been to the theatre, taken part in drumming workshops, made 'feelings jars' or just played and had fun.</div><div>Parent support groups - for mums and dads ( though Stephen hasn't accessed the dads one). I've been on coffee mornings and spa days with other Acorns' mums.</div><div>Family days out to the zoo and the cinema amongst others where, for once, having a feeding tube and oxygen and a wheelchair isn't a spectacle.</div><div>Holistic therapy</div><div><br /></div><div><br /></div><div>Hugh and I helped make this promotional video for Acorns with the aim of showing those who feel nervous about accessing support from a children's hospice, just like I was, realise that it's nothing to be fearful of and can actually be a huge help.</div><div><div><br /></div><div><br /><div><br /></div><div><br /></div></div></div><iframe allow="accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/txw4a9sfCx4" width="560"></iframe>Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com0tag:blogger.com,1999:blog-3268441232099307652.post-78646380088625195762018-03-09T22:16:00.001+00:002018-03-09T22:32:05.352+00:00Hugh's Vagus Nerve Stimulator (VNS) Story<br />
<em style="background-color: white; box-sizing: border-box; color: #444444; font-family: Lato; font-size: 16px;"><span style="box-sizing: border-box; font-weight: 700;">This video is part of the <a href="https://livingwellwithepilepsy.com/epilepsy-blog-relay" target="_blank"><span style="color: #6e0d84;"><span style="box-sizing: border-box;">Epilepsy Blog Relay™</span></span> </a>which will run from March 1 to March 31, 2018. </span></em><br />
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<iframe width="560" height="315" src="https://www.youtube.com/embed/WNatTYk12TA?rel=0" frameborder="0" allow="autoplay; encrypted-media" allowfullscreen></iframe>
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#epilepsyblogrelay<br />
<br />Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com0tag:blogger.com,1999:blog-3268441232099307652.post-10859093977594589772018-02-27T21:44:00.001+00:002018-02-28T18:15:59.029+00:00How I Felt When My Son Was Diagnosed With A Rare Disease<br />
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<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">My second born son, Hugh,
is now nearly 8 years old, but just weeks after he was born I was concerned that
there was something different about him.<span style="margin: 0px;">
</span>Months of well-meaning family and friends and adamant doctors reassured,
or forcefully asserted, that there was nothing wrong with him and it was all in
my mind.<span style="margin: 0px;"> </span>It wasn’t a comfort though to
be proved right when, at 7 months old, we were told he had a <a href="http://www.littlemamamurphy.co.uk/p/little-hs-diagnosis-or-lack-thereof.html" target="_blank">genetic condition</a>.<span style="margin: 0px;"> </span>I knew then that this was a
something he wouldn’t grown out of, something we couldn’t fix.<span style="margin: 0px;"> </span>His disorder however, appeared to be so rare
that it was undiagnosed; that is to say the tests could show his condition was
genetic, but they couldn’t identify specifically what that condition was.</span></div>
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<br /></div>
<br />
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<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">We underwent lots of
testing to try and find out what was causing Hugh’s difficulties – brain scans
and blood tests aplenty.<span style="margin: 0px;"> </span>We took part in
research studies – the DDD study (Deciphering Developmental Disorders) and The100,000
Genome Project.<span style="margin: 0px;"> </span>In the early days, I was
convinced every new appointment or every new letter would hold the answer; the
allusive diagnosis.<span style="margin: 0px;"> </span>Yet, as time went
on, I became accustomed to not knowing.<span style="margin: 0px;">
</span>At times I wondered if we’d ever find out.<span style="margin: 0px;"> </span>A glimmer of hope appeared when a genetic
counsellor on <a href="http://www.bwhpathology.org/dgap/" target="_blank">The Developmental Genome Anatomy Project (DGAP)</a> in America
contacted me to say that their study looked at chromosome abnormalities just
like Hugh’s.<span style="margin: 0px;"> </span>They thought that they
could have a diagnosis for me within 6 months.<span style="margin: 0px;">
</span>It took significantly longer than that, but diagnose him they did!</span></div>
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<br /></div>
<br />
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<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">After three years on
the study (and nearly 8 years of searching for answers), Hugh has a diagnosis
of <a href="https://foxg1.org/" target="_blank">FOXG1 Syndrome.</a><span style="margin: 0px;"> </span></span></div>
<br />
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<br /></div>
<br />
<div style="margin: 0px; text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">We’ve searched for so
long for this diagnosis that it’s taken me some time to pick apart how I’m
feeling about it.<span style="margin: 0px;"> </span>My first feeling was
one of </span><b style="mso-bidi-font-weight: normal;"><span style="color: #002060; font-family: "arial" , sans-serif; font-size: 16pt; margin: 0px;">relief</span></b><span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">.<span style="margin: 0px;"> </span>We finally had a label, somewhere to call
home, and I could categorically say for certain that it is not my fault. You’d
think, after all these years, that I’d have stopped blaming myself, but ridiculously,
even though we’ve known since Hugh was about 7 months old that he has a genetic
condition, there was still a tiny part of me that wondered if it was something
I’d done wrong.<span style="margin: 0px;"> </span>I’m also incredibly
relieved that the diagnosis itself hasn’t brought with it any scary symptoms I
need to look out for.<span style="margin: 0px;"> </span>The list of symptoms
for FOXG1 syndrome are a very accurate description of Hugh.<span style="margin: 0px;"> </span>The biggest health risk is the seizures, but
we’ve been dealing with those for years.<span style="margin: 0px;">
</span>Sadly, some families are suddenly having to cope with the fact that
their child, whom they assumed was relatively healthy, are more susceptible to
certain types of cancers or have the potential to regress. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">A part of me is </span><b style="mso-bidi-font-weight: normal;"><span style="color: #002060; font-family: "arial" , sans-serif; font-size: 16pt; margin: 0px;">excited</span></b><span style="font-family: "arial" , sans-serif; font-size: 16pt; margin: 0px;">
</span><span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">by the diagnosis.<span style="margin: 0px;"> </span>I would
be able to meet other families with children who had the same condition a Hugh.<span style="margin: 0px;"> </span>We’re lucky that, despite it being a rare condition,
there are currently around 350 children diagnosed with it across the
world.<span style="margin: 0px;"> </span>That might not sound a lot, yet
some children are being diagnosed with conditions where they’re the only ones
so far.<span style="margin: 0px;"> </span>I imagine that must be even more
isolating than being undiagnosed. There’s an active facebook group of other
families of children diagnosed with FOXG1 so I’ve been able to reach out, ask
questions and compare.<span style="margin: 0px;"> </span>Even Sean, Hugh’s
older brother, has been excited at the prospect of meeting other children who
are ‘Foxes like Hugh’. For his part, he’s interested to find out if they all
share similar vocalisations and whether they’d all communicate.<span style="margin: 0px;"> </span>I think he still suspects Hugh is speaking a
different language and that maybe it’s one that the other Fox children will
understand.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS74xt7_y1zQmaIyEMByWzgw9bQoCBGrjlEuX-jDZ5TH3ExXQ5i21wWRFOXF6ypCB0p3fa6qeHZay0oq23CJZmatrvGysHTKTKM5giNxC0IagCU7hG0_oWrMWfPScri_WF4Yk_aFkKnR4/s1600/brothers4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS74xt7_y1zQmaIyEMByWzgw9bQoCBGrjlEuX-jDZ5TH3ExXQ5i21wWRFOXF6ypCB0p3fa6qeHZay0oq23CJZmatrvGysHTKTKM5giNxC0IagCU7hG0_oWrMWfPScri_WF4Yk_aFkKnR4/s320/brothers4.jpg" width="240" /></a></div>
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<br /></div>
<br />
<div style="margin: 0px; text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">I also feel a bit </span><b style="mso-bidi-font-weight: normal;"><span style="color: #002060; font-family: "arial" , sans-serif; font-size: 16pt; margin: 0px;">angry</span></b><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;"> </span></b><span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">that it has taken so
long to find out the cause of Hugh’s difficulties.<span style="margin: 0px;"> </span>I wonder if we’d known earlier whether we’d
have got support more quickly.<span style="margin: 0px;"> </span>Many of
the children with FOXG1 have feeding difficulties and have a feeding tube; perhaps
we wouldn’t have spent a year with an NG tube while I continually berated
myself for not being able to get Hugh to eat enough, stressing both him and
myself out.<span style="margin: 0px;"> </span>Perhaps he wouldn’t have had
to suffer the blisters on his cheeks from the tape on his face to hold the NG
in place and the socks on his hands to stop him pulling it out. Perhaps he
wouldn’t have had to endure the pain and horror of being pinned down on the hospital
bed while nurses passed another NG tube, drawing blood by scratching his
enlarged adenoids and tonsils and causing him to go blue as he held his breath
in anger and fear.<span style="margin: 0px;"> </span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">One symptom of FOXG1 Syndrome
is significantly delayed gross motor skills; many of the children can’t walk or
sit independently.<span style="margin: 0px;"> </span>Maybe we’d have had regular
and consistent support from a physiotherapist from an earlier age. Maybe Hugh
wouldn’t have been discharged from the Occupational Therapy service at 2
because ‘he might learn to walk’ and then we wouldn’t have had to fight to get
reallocated a therapist and sit on a waiting list for 18 months, once he was
old enough to ‘prove’ that walking was very unlikely and that we would need a
hoist and a ramp after all.<span style="margin: 0px;"> </span></span></div>
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<br /></div>
<br />
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<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">Several of the
children and young adults with FOXG1 Syndrome have medically intractable
seizures that present with apneoas.<span style="margin: 0px;">
</span>Maybe when he stopped breathing that first time in December 2010, epilepsy
would have been their first thought – rather than to send me home saying ‘it’s
just one of those things’.<span style="margin: 0px;"> </span>Maybe it wouldn’t
have taken another 4 months of him stopping breathing, sometimes as often as
twice a week before they decided to treat it as <a href="http://www.littlemamamurphy.co.uk/2016/06/it-wasnt-worst-seizure-but.html" target="_blank">epilepsy</a>.<span style="margin: 0px;"> </span>Maybe, knowing that this type of epilepsy doesn’t
respond well to medication, they’d have tried him on the ketogenic diet
earlier.<span style="margin: 0px;"> </span>Maybe Hugh wouldn’t have had to
s<a href="http://www.littlemamamurphy.co.uk/2011/11/six-months-on-from-epilepsy-diagnosis.html" target="_blank">uffer repeatedly </a>as he stopped breathing again and again and again,
medications failing to make a difference. Maybe he wouldn’t have suffered the
horrific side effects of some 7 different types of anti-epileptics that he
tried.<span style="margin: 0px;"> </span>Maybe he wouldn’t have ended up
in high dependency, so damaged by seizures and so heavily drugged that he
couldn’t lift his head and he lost the ability to even smile.<span style="margin: 0px;"> </span>Actually, I’m more </span><b style="mso-bidi-font-weight: normal;"><span style="color: #002060; font-family: "arial" , sans-serif; font-size: 16pt; margin: 0px;">sad </span></b><span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">than
angry about that. </span></div>
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<div style="margin: 0px; text-align: justify;">
<br /></div>
<br />
<div style="margin: 0px; text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">But, for all the
benefits that an earlier diagnosis may, or may not, have brought.<span style="margin: 0px;"> </span>I can’t help but feel </span><b style="mso-bidi-font-weight: normal;"><span style="color: #002060; font-family: "arial" , sans-serif; font-size: 16pt; margin: 0px;">lucky </span></b><span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">that
we didn’t know sooner and that Hugh remained undiagnosed for so long.<span style="margin: 0px;"> </span>I imagine being handed a leaflet as we left
the hospital with our newborn, or at 6 months old when they first noticed his
head wasn’t growing.<span style="margin: 0px;"> </span>I imagine the list
of things that that leaflet might tell me about the future I could expect for my
beautiful baby.</span></div>
<br />
<div style="margin: 0px; text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">He will never sit or walk.</span></div>
<br />
<div style="margin: 0px; text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">He will never talk.</span></div>
<br />
<div style="margin: 0px; text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">He will struggle to
eat and will most likely be tube fed.</span></div>
<br />
<div style="margin: 0px; text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">He will suffer from seizures.</span></div>
<br />
<div style="margin: 0px; text-align: justify;">
<br /></div>
<br />
<div style="margin: 0px; text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">I can only begin to
imagine how terrifying and devastating that would be.</span></div>
<br />
<div style="margin: 0px; text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">I’d wonder what life
would be like for a child like <i style="mso-bidi-font-style: normal;"><b>that</b>.</i><span style="margin: 0px;"> </span></span></div>
<br />
<div style="margin: 0px; text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">I’d wonder how a
family could cope with a child like <i style="mso-bidi-font-style: normal;"><b>that</b>.</i></span></div>
<br />
<div style="margin: 0px; text-align: justify;">
<br /></div>
<br />
<div style="margin: 0px; text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">And yet that list,
well, it’s an accurate description of Hugh.</span></div>
<br />
<div style="margin: 0px; text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">He is <i style="mso-bidi-font-style: normal;"><b>that</b></i> child.</span></div>
<br />
<div style="margin: 0px; text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">We are <i style="mso-bidi-font-style: normal;"><b>that</b></i> family.</span></div>
<br />
<div style="margin: 0px; text-align: justify;">
<br /></div>
<br />
<div style="margin: 0px; text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">And what that list
doesn’t tell you is about how much love a child like <b><i style="mso-bidi-font-style: normal;">that</i> </b>can give.<span style="margin: 0px;"> </span>Not through
their words, nor even their actions, but in their smile, in their very
being.<span style="margin: 0px;"> </span>How <i style="mso-bidi-font-style: normal;">that </i>child can show you the beauty in the world, a beauty you didn’t
even know was there. That leaflet wouldn’t mention that in time, the walking
and sitting becomes less important and although the seizures are difficult, somehow,
you’ll learn to live with it.</span></div>
<br />
<div style="margin: 0px; text-align: justify;">
<br /></div>
<br />
<div style="margin: 0px; text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">I have learnt these
things gradually about Hugh over the years without a diagnosis or an
information leaflet. We faced each new challenge as it came, adjusted our
expectations for the future as time passed. Perhaps slowly coming to terms with
Hugh’s disabilities over time has made it easier for me to accept his diagnosis
than if I’d been confronted with it all at once at an early age.<span style="margin: 0px;"> </span></span></div>
<br />
<div style="margin: 0px; text-align: justify;">
<br /></div>
<br />
<div style="margin: 0px; text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">All things
considered, I’m </span><span style="color: #002060; font-family: "arial" , sans-serif; font-size: 18pt; margin: 0px;">h</span><span style="color: #002060; font-family: "arial" , sans-serif; font-size: 20pt; margin: 0px;">appy
</span><span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">that we have our rare disease diagnosis of FOXG1 syndrome,
that we have answers and can finally stop searching.<span style="margin: 0px;"> </span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This post is written to raise awareness of rare diseases for <a href="https://twitter.com/rarediseaseday" target="_blank">#RareDiseaseDay</a>. 1 in 17 people will be affected by a rare disease at some point in their lives.</span></div>
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***** ***** ***** ***** *****</div>
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<i>If you liked this post, please consider reading my post <a href="http://www.littlemamamurphy.co.uk/2017/02/dear-doctor.html" target="_blank">Dear Doctor </a>and voting for it in the Biggest Impact Category at the<a href="http://www.myfamilyourneeds.co.uk/baps/biggest-impact/" target="_blank"> BAPs blogging awards .</a></i></div>
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<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com0tag:blogger.com,1999:blog-3268441232099307652.post-42998991902760299232018-01-22T13:03:00.001+00:002018-01-22T22:31:37.272+00:00The Final Stretch<br />
<div style="margin: 0px; text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; margin: 0px;">I vividly remember the day we first started the
journey of searching for a diagnosis. I was sat in the conservatory in our old
house, huddled in the corner of the large, brown sofa. It was dark outside and I
stared out into the garden as I explained to my cousin, over the phone, that
the paediatrician had decided to do more tests to find out what was wrong with
Hugh. I’d been to the children’s hospital earlier that day for a regular gastro
appointment to discuss Hugh’s reflux and eczema. We were trialling different
formula milks to no avail and he was on copious amounts of medication that he’d
barely tolerate. Yet, this week the paediatrician seemed more concerned about
Hugh’s development, particularly when he discovered that Hugh’s head was
smaller than it should be. In no uncertain terms he told me that it was time
to run some tests. <br />
<br />
I’d been buying time and avoiding this for months. Despite being concerned that
there was something ‘wrong’ with Hugh for months only to be assured that ‘all
children develop at their own rate’ or that I was ‘seeing things that weren’t
there’, I’d continued to make excuses whenever the paediatrician had broached
it in the past: maybe Hugh was born too early - I was induced at 38 weeks, I
surmised it could have been another 4 weeks until he was ready. Maybe the
(almost) two weeks in neonatal delayed his development? Perhaps the reflux was
holding him back- he wasn’t getting all the essential nutrients because he was
vomiting so much. The paediatrician agreed that to some extent these could all
be relevant, but he was clear- the head circumference not growing in line with
this height and weight, coupled with his by now fairly obvious delays, meant it
really was time to intervene. He could accept my excuses no longer. Away from
the hospital I’d been raising my fears regularly, but now that someone finally
was agreeing with me and not only that, wanted to find out why, I was terrified.
I didn’t want to be right. I didn’t want anything to be ‘wrong’ with my baby. I
remember explaining to my cousin that I was sorely tempted to refuse the
testing- I didn’t want to know. I didn’t want him labelled. I knew, deep down,
how illogical that was, but I was running scared. What if he had something they
couldn’t fix? She calmly talked me down, assuring me a label wouldn’t change
Hugh but might enable him to get the right support and the right treatment to
give him the best possible future.<br />
<br />
The long road of testing began when he was 6 months old. <br />
<br />
I know now, that the small head (microcephaly) is a good indicator of a genetic
condition. Back then, I was blissfully unaware. I’m not sure what I thought
they were looking for mind you, I knew there were blood tests and scans, an
x-ray of his skull to see if it had fused early and a brain MRI but other than
worrying Hugh might need an operation on his skull, I assumed once testing had
started that we’d soon be given answers: a neat little label, a treatment plan
and we’d all live happily ever after.<br />
<br />
It didn’t occur to me that they might not know what was ‘wrong’.<br />
<br />
It’s been nearly seven and a half years since testing began. We knew fairly
quickly that Hugh has a genetic condition of some sort. Numerous tests and
research studies have failed to identify it. Yet.<br />
<br />
Recently there’s been a scientific paper published outlining the specific
abnormalities in Hugh’s DNA. It points to a diagnosis. Today we meet with the
Consultant Geneticist to discuss those results. And potentially get a confirmed
diagnosis. We're on the home straight now, the final stretch of the race.<br />
<br />
And how do I feel?<br />
<br />
Excited, I think. I’m at a slight advantage, given that I’ve been chatting with
the researchers in America, so I already know what the potential diagnosis is.
It’s not too scary- there’s no hideous, scary things to look out for in the
future. So as far as diagnoses go, it’s not a bad one.<br />
<br />
I’m not sure the diagnosis will change anything. It’ll make form filling
easier, but it’s so rare it’ll be meaningless to most people anyway.<br />
<br />
There’s a support group I can join where there are families who’s children have
the same condition so it’ll be interesting to meet children like Hugh and might
give us a glimpse into what the future might look like for him.<br />
<br />
But on a day to day basis it’s unlikely to change very much at all. </span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT2PsCpsSA_U1ASldcnDPptweIvZh7FkID6uBqlUPMwtQg-7A_v3WYyBkFqH3G2q-oN60ZAM4ullCuxT-N6yhLOqVOHZYIxpi_rc0ioIqhZdo0FlpYDb-TlbQEEUvgd89aVXqV09mZnDw/s1600/Hughbowtie.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT2PsCpsSA_U1ASldcnDPptweIvZh7FkID6uBqlUPMwtQg-7A_v3WYyBkFqH3G2q-oN60ZAM4ullCuxT-N6yhLOqVOHZYIxpi_rc0ioIqhZdo0FlpYDb-TlbQEEUvgd89aVXqV09mZnDw/s320/Hughbowtie.jpg" width="240" /></a></div>
<br />
<br />
It’ll be a comfort to finally have that label though, I think.<br />
After nearly 8 years of not knowing.<br />
8 years of searching.<br />
To finally, finally know why.<br />
<br style="mso-special-character: line-break;" />
<br />
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com2tag:blogger.com,1999:blog-3268441232099307652.post-15736836200449014732017-10-24T14:32:00.001+01:002017-10-24T14:32:03.905+01:00A Superhero for a Brother<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBCzRMpW4gpJyoV6J70lqAwoN-JdTfrgLDuWcSWjcTNcjgWairdwDfdHt6Ra26lofh__Ydvs9zbtKoiLYaJBJZr7rwkHr_c5sTNcceSdmGGhOdG5SaQmbFZvVtYz84FlHS_85OuLWo-CE/s1600/hero.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBCzRMpW4gpJyoV6J70lqAwoN-JdTfrgLDuWcSWjcTNcjgWairdwDfdHt6Ra26lofh__Ydvs9zbtKoiLYaJBJZr7rwkHr_c5sTNcceSdmGGhOdG5SaQmbFZvVtYz84FlHS_85OuLWo-CE/s320/hero.jpg" width="240" /></a></div>
<div style="text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;">When Sean was 2 he used to make his little
Fireman Sam figures call the ambulance and go to the hospital. There was always
someone needing oxygen in his little games. He’d see me giving his baby brother
mouth to mouth so often it was completely normal for him. We called it a
‘special kiss ‘ to help Hugh breathe. Usually Sean would sit happily watching
TV while his brother lay lifeless and I tried to call the ambulance in as calm
a manner as possible. Sometimes he’d get jealous of the attention Hugh was getting
and demand that it was his turn for a special kiss, unaware of the significance
of his brother turning blue.</span></div>
<div style="text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-nr23KdKTYITzjLzBOOzXce7eTIPpmZkqsxEOHbFQZ4bDJHZuLzrOnw8OK4y4nHlBrTb2dHaEnbNsmnaZyLPtUrdGqKLruwYDQigNOABy8rxVZZ3RLYQ_ahxEpJPhl7WeCtyKTqF7VRI/s1600/2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="360" data-original-width="640" height="179" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-nr23KdKTYITzjLzBOOzXce7eTIPpmZkqsxEOHbFQZ4bDJHZuLzrOnw8OK4y4nHlBrTb2dHaEnbNsmnaZyLPtUrdGqKLruwYDQigNOABy8rxVZZ3RLYQ_ahxEpJPhl7WeCtyKTqF7VRI/s320/2.jpg" width="320" /></a></div>
<div style="text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><div style="text-align: justify;">
When Sean was 3, his brother was seriously ill. His seizures were at their
worst and we could barely leave the house. Sean learnt not to expect me to be
there in the morning, even if I’d tucked him in the night before. He never knew
who would be picking him up from nursery or at what time. He didn’t make a
fuss. He played happily in the playroom on the children’s ward, or in the
gardens of the children’s hospice.</div>
</span><span style="font-family: Arial, Helvetica, sans-serif;"><div style="text-align: justify;">
<br /></div>
</span><span style="font-family: Arial, Helvetica, sans-serif;"><div style="text-align: justify;">
When Sean was 4 he brought a toy dog to school with a box of tubes and
syringes. For his ‘show and tell’ he demonstrated to the class how to set up a
tube feed. He made new friends, friends that hadn’t met his little brother
before. And when he brought them to the house he demonstrated with pride how to
use the ceiling track hoist and how you could angle the hospital profiling bed
to make a slide.</div>
<div style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9o7d5XQTI3SPF3NN0VlCUDiWVgWzVcHUvHZj_mV-eD6WSwqnlO41zbtevfIOIdxMmtJmIX-63JUCZvGeGqINOZ_STZG3QAUuVPLJtC9m5t97SrfjyGt_TJ4jyYC8v9MAE-Vtg9HEnUUg/s1600/3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9o7d5XQTI3SPF3NN0VlCUDiWVgWzVcHUvHZj_mV-eD6WSwqnlO41zbtevfIOIdxMmtJmIX-63JUCZvGeGqINOZ_STZG3QAUuVPLJtC9m5t97SrfjyGt_TJ4jyYC8v9MAE-Vtg9HEnUUg/s320/3.jpg" width="320" /></a></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<br /></div>
</span><span style="font-family: Arial, Helvetica, sans-serif;"><div style="text-align: justify;">
When Sean was 5 he learnt how to do CPR. We’d organised training for family and
Hugh’s carers and Sean wanted to learn. We let him. Have you ever had CPR
training? I first had it as part of the Duke of Edinburgh award at secondary
school where we had to imagine some hypothetical scenario involving a stranger.
It’s different learning to do it and knowing you’ll have to use it,
particularly when the child you’ll be resuscitating is sat in the room with
you, smiling happily.</div>
<div style="text-align: justify;">
<br /></div>
</span><span style="font-family: Arial, Helvetica, sans-serif;"><div style="text-align: justify;">
When Sean was 6, Hugh had seizures while I wasn’t there. Sean watched as the
carer saved his brother’s life. He watched the police cars and ambulance rush
off in a blur of blue lights and sirens, taking his brother away. Just weeks
later Hugh stopped breathing in front of him again. From that point on Sean
refused to sit on that spot on the settee in a superstitious effort to prevent
Hugh’s seizures happening.</div>
<div style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizqpIITkO72TsAcbGCyyUh8KYYIvGj6zfos44Q_8H9BVi-7MlRcHnEZsDd7J4LyHXw3m7YpX7x6TOXeFrHRYCq_t6DfMrHYs2GucJZMX7Imz1AxHO9ujk4_3ZCtrLnMgs7OicGrrcYjlI/s1600/mothersday.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="658" data-original-width="720" height="291" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizqpIITkO72TsAcbGCyyUh8KYYIvGj6zfos44Q_8H9BVi-7MlRcHnEZsDd7J4LyHXw3m7YpX7x6TOXeFrHRYCq_t6DfMrHYs2GucJZMX7Imz1AxHO9ujk4_3ZCtrLnMgs7OicGrrcYjlI/s320/mothersday.jpg" width="320" /></a></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<br /></div>
</span><span style="font-family: Arial, Helvetica, sans-serif;"><div style="text-align: justify;">
When Sean was 7, he celebrated both Mother’s Day and Father’s Day in hospital.
Eating breakfast on the little pull out bed next to his brother, sharing
chocolates with the nurses, climbing into the hospital bed so he and Hugh could
present us with their homemade cards together. If Hugh wasn’t with us, he
became anxious at the sound of ambulances in the distance, worried they were
coming for his brother. If his brother was quiet, Sean would surreptitiously
check he was still breathing.</div>
<div style="text-align: justify;">
<br /></div>
</span><span style="font-family: Arial, Helvetica, sans-serif;"><div style="text-align: justify;">
When Sean was 8 he gave his brother mouth to mouth.</div>
</span><span style="font-family: Arial, Helvetica, sans-serif;"><div style="text-align: justify;">
<br /></div>
</span><span style="font-family: Arial, Helvetica, sans-serif;"><div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqGBKfTgQlaA-ElmvyY5HP4n83P37dC_EebPUBupmgG2ZBLf6rYzQBPM0Wn7tcckPUMJiJUj3wRaAWMD3XfhXGBAnWtQbjZUwOzDXj4i2ETzMGiEWLRyoU7vkwxUMlf2Wh5KQqqBtUzmE/s1600/florida.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqGBKfTgQlaA-ElmvyY5HP4n83P37dC_EebPUBupmgG2ZBLf6rYzQBPM0Wn7tcckPUMJiJUj3wRaAWMD3XfhXGBAnWtQbjZUwOzDXj4i2ETzMGiEWLRyoU7vkwxUMlf2Wh5KQqqBtUzmE/s320/florida.jpg" width="320" /></a></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
At just 8 years young, Sean has seen things no child should ever see, he has
done things most adults have never had to do.</div>
</span><span style="font-family: Arial, Helvetica, sans-serif;"><div style="text-align: justify;">
Things that would give you nightmares.</div>
</span><span style="font-family: Arial, Helvetica, sans-serif;"><div style="text-align: justify;">
Things that<b><i> do</i></b> give me nightmares.</div>
<div style="text-align: justify;">
<br /></div>
</span><span style="font-family: Arial, Helvetica, sans-serif;"><h4 style="text-align: justify;">
This isn’t the life I would have chosen for him. These aren’t the lessons I
would have wanted him to learn so young.</h4>
<div style="text-align: justify;">
<br /></div>
</span><span style="font-family: Arial, Helvetica, sans-serif;"><div style="text-align: justify;">
Yet, this is the life we lead and I am immensely proud of how he handles it all
with such courage, maturity, strength and resilience.</div>
</span><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><blockquote class="tr_bq">
<span style="font-family: Arial, Helvetica, sans-serif;">
Sometimes being a brother is even better than being a superhero</span><span style="font-family: Arial, Helvetica, sans-serif;">
Marc Brown</span></blockquote>
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRCDK9SBNK1_pKDQ9IRol9BIF9ngVt13S4HdcTlAeUG8zh6VgmF5vYN1XVPJOb_Z4Pnr_3oCzgOSgVNQAVHR8VJSiH0DEn_7ij4ax1_2kQtm2aFx9mMP0UxFSE_8LkbbYkC9KdwYpJahA/s1600/brothers1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="396" data-original-width="1200" height="209" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRCDK9SBNK1_pKDQ9IRol9BIF9ngVt13S4HdcTlAeUG8zh6VgmF5vYN1XVPJOb_Z4Pnr_3oCzgOSgVNQAVHR8VJSiH0DEn_7ij4ax1_2kQtm2aFx9mMP0UxFSE_8LkbbYkC9KdwYpJahA/s640/brothers1.jpg" width="640" /></a></div>
<div style="text-align: justify;">
<br /></div>
<!--[endif]-->Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com15tag:blogger.com,1999:blog-3268441232099307652.post-85809974214569290222017-10-20T15:51:00.000+01:002017-10-20T15:51:04.284+01:00Sharing our Undiagnosed Story with the Professionals<div class="MsoNoSpacing">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXTKA6u-YI12r0lOZBhPEMn_VhLErWs60etntWf3Aui3-B4AUniZjzkUIDA19DstNlFRUKZXdJoIVp-2sUsMaP94tA_jmXsvUTK0ns9w1NFVDgIox55MUXRI-VR8EIhyphenhypheni7PL9AEZo74Hk/s1600/IMG_5321%255B2237%255D.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="510" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXTKA6u-YI12r0lOZBhPEMn_VhLErWs60etntWf3Aui3-B4AUniZjzkUIDA19DstNlFRUKZXdJoIVp-2sUsMaP94tA_jmXsvUTK0ns9w1NFVDgIox55MUXRI-VR8EIhyphenhypheni7PL9AEZo74Hk/s320/IMG_5321%255B2237%255D.jpg" width="255" /></a></div>
<div style="text-align: justify;">
<span style="font-family: Arial, sans-serif; font-size: 12pt;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: Arial, sans-serif; font-size: 12pt;">Despite
being a teacher, speaking in front of a group of people always filled me with
unease. Give me a class of 10-year olds any day, but a room full of adults
would fill me with dread. I’m the sort of person that would even go bright red
in staff meetings if I had to answer a question!</span></div>
<div style="text-align: justify;">
<span style="font-family: Arial, sans-serif;"><br /></span></div>
<span style="font-family: Arial, sans-serif; font-size: 12pt;"><div style="text-align: justify;">
<span style="font-size: 12pt;">So I, more than anyone, am surprised at the amount of times since having Hugh I
have found myself standing up in a room full of people giving a presentation.
Maybe because I feel so passionate about undiagnosed families getting the right
support it makes it easier to speak with confidence, plus my son Hugh is
undoubtedly my specialist subject. Whatever the reason, rather than dread it
I’m reaching a stage now where I’m actually enjoying it.</span></div>
</span>
<div style="text-align: justify;">
<br /></div>
<span style="font-family: Arial, sans-serif; font-size: 12pt;"><div style="text-align: justify;">
<span style="font-size: 12pt;">My first foray into public speaking came courtesy of Hugh’s paediatrician 5
years ago when she asked me to talk to trainee registrars about life with a
medically complex child. PowerPoint of cute photos at the ready, I took the
opportunity to explain the challenges faced with a lack of diagnosis and the
support and understanding that would make life easier for us, highlighting the
importance of <a href="https://www.undiagnosed.org.uk/" target="_blank">SWAN UK.</a></span></div>
<o:p></o:p></span><br />
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing">
</div>
<div style="text-align: justify;">
<span style="font-family: Arial, sans-serif; font-size: 12pt;">And
I’ve been talking about the same thing fairly regularly since.</span></div>
<div style="text-align: justify;">
<span style="font-family: Arial, sans-serif;"><br /></span></div>
<span style="font-family: Arial, sans-serif; font-size: 12pt;"><div style="text-align: justify;">
<span style="font-size: 12pt;">Whether it be at the <a href="https://www.specialneedsjungle.com/birmingham-childrens-hospital-puts-the-fun-in-fundraising-in-its-fabulous-rare-disease-day-event/" target="_blank">local children’s hospital</a> to a group of like minded parents
or at <a href="https://www.undiagnosed.org.uk/news-events/news/swan-uk-receives-funding-from-house-of-fraser-s-annual-charity-event/" target="_blank">a fundraising event </a>to celebrities and wealthy donors alike, the key
points remain the same:</span></div>
<o:p></o:p></span><br />
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="margin-left: 36pt; text-align: justify; text-indent: -18pt;">
<!--[if !supportLists]--><span style="font-family: Symbol; font-size: 12.0pt; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size: 7pt; font-stretch: normal; font-variant-numeric: normal; line-height: normal;">
</span></span><!--[endif]--><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">Not
having a diagnosis is relatively common –<a href="https://www.undiagnosed.org.uk/support-information/what-does-swan-or-being-undiagnosed-mean/" target="_blank"> approximately 6000 children are bornin the UK each year</a> with a syndrome without a name – a genetic condition so
rare that it is often impossible to diagnose.<o:p></o:p></span></div>
<div class="MsoNoSpacing" style="margin-left: 36pt; text-align: justify; text-indent: -18pt;">
<!--[if !supportLists]--><span style="font-family: Symbol; font-size: 12.0pt; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-size: 7pt; font-stretch: normal; font-variant-numeric: normal; line-height: normal;">
</span></span><!--[endif]--><span style="font-family: "Arial",sans-serif; font-size: 12.0pt;">Not
having a diagnosis can not only be frightening and isolating but <a href="http://www.littlemamamurphy.co.uk/2015/04/without-label-support-hard-access.html" target="_blank">can also prevent or delay access to appropriate services and support</a>. This needs to change – support shouldn’t be
dependent on a diagnosis but on need.<o:p></o:p></span></div>
<div class="MsoNoSpacing" style="margin-left: 36.0pt; mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
</div>
<div style="text-align: justify;">
<span style="font-family: Symbol; font-size: 12pt; text-indent: -18pt;">·<span style="font-family: "Times New Roman"; font-size: 7pt; font-stretch: normal; font-variant-numeric: normal; line-height: normal;">
</span></span><span style="font-family: Arial, sans-serif; font-size: 12pt; text-indent: -18pt;">This
is our child. First and foremost.
Whether they are seriously ill, medically complex, developmentally
delayed and/or don’t fit neatly into any little box, they are still our
children and as parents/carers we often know them best. Please treat them and
us with empathy and respect.</span></div>
<!--[if !supportLists]--><div style="text-align: justify;">
<span style="font-family: Arial, sans-serif;"><br /></span></div>
<!--[if !supportLineBreakNewLine]-->
<!--[endif]--><span style="font-family: Arial, sans-serif; font-size: 12pt;"><o:p></o:p></span><br />
<br />
<div class="MsoNoSpacing" style="margin-left: 18.0pt;">
</div>
<div style="text-align: justify;">
<span style="font-family: Arial, sans-serif;"><br /></span></div>
<div style="font-family: Arial, sans-serif; font-size: 12pt; text-align: justify;">
<span style="font-size: 12pt;">Plus, all my presentations come with a healthy dose of cute photos to detract
from my slightly flushed cheeks and trembling hands.</span></div>
<div style="text-align: justify;">
<span style="font-family: Arial, sans-serif;"><br /></span></div>
<span style="font-family: Arial, sans-serif; font-size: 12pt;"><div style="text-align: justify;">
<span style="font-size: 12pt;">Most recently I have had the honour of presenting as part of Counselling Skills
for Genomics module at The University of Birmingham. The course is aimed at NHS
staff and is part of an MSc in Genomic Medicine. Again, the key points remain
but with an added focus on the importance of having a positive and empathetic
relationship with the families involved and remembering that at the centre of
everything is the undiagnosed child and that all decisions and discussions
should reflect that. I shared some horror stories (both <a href="http://www.littlemamamurphy.co.uk/2017/02/dear-doctor.html" target="_blank">our own</a> and those of
friends) and pointed out some of the upsetting words used on letters and in
medical appointments to describe our children. I explained how finding out
diagnoses by accident in a letter is never a good thing and the importance of
honest, open and regular communication. As always, I highlighted the important
work being done by <a href="https://www.undiagnosed.org.uk/" target="_blank">SWAN UK </a>to ensure families of undiagnosed children and young
people don’t feel alone and in raising both public and professional awareness
of undiagnosed genetic conditions and the unique challenges faced by families.</span></div>
</span>
<div style="text-align: justify;">
<br /></div>
<span style="font-family: Arial, sans-serif; font-size: 12pt;"><div style="text-align: justify;">
<span style="font-size: 12pt;">This is the second time I’ve presented as part of this module and have been
asked to come back again. Maybe I should start calling myself a ‘guest
lecturer’, The feedback has been really positive and I gather that they all had
lots they could take away from it.</span></div>
</span>
<div style="text-align: justify;">
<br /></div>
<span style="font-family: Arial, sans-serif; font-size: 12pt;"><div style="text-align: justify;">
<span style="font-size: 12pt;">The right support for parents/carers of undiagnosed children is vital and I
hope that by sharing our story time and again that I will continue to raise
awareness and influence and improve the experience of families starting this
journey after us.</span></div>
<div style="text-align: justify;">
<span style="font-size: 12pt;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-size: 12pt;"><br /></span></div>
</span>
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<!--[endif]--><span style="font-family: Arial, sans-serif; font-size: 12pt;"><o:p></o:p></span>Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com1tag:blogger.com,1999:blog-3268441232099307652.post-3391486245629165742017-10-11T13:02:00.004+01:002017-10-11T13:03:36.992+01:00Using the Splashy with a sling and hoist - A review<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLbylyMkcfQxPltC-kw1CG4zEpFlraHUJxfMrzwy-xpcO3TYpBXCUMqJsxZKu7__8a9BEcXesGxvEaKXtR0CBMb19j6mErFAM-pW8Rs7R7uEmsiTtiehhR4xP5NEF8Jq4e-uUqmzOiCe8/s1600/HughBath.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLbylyMkcfQxPltC-kw1CG4zEpFlraHUJxfMrzwy-xpcO3TYpBXCUMqJsxZKu7__8a9BEcXesGxvEaKXtR0CBMb19j6mErFAM-pW8Rs7R7uEmsiTtiehhR4xP5NEF8Jq4e-uUqmzOiCe8/s320/HughBath.jpg" width="320" /></a></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Hugh loves water. Well, warm water anyway.
Think hot baths and spa pools rather than the sea and council run swimming
pools. To be honest, I’m with him on that.
Baths have always been a great source of joy for him but as he has grown
they have become harder for him to access and enjoy. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Hugh is still unable to sit independently and
at 7 he is far too heavy to lift into the bath and support one handed like you
might a younger child. Unable to find a
suitable chair that we could use in the bath for Hugh, we resorted to showering
him instead – something he absolutely hated with a passion; screaming until he
was blue in the face and making himself sick in distress. The truth is, I began to avoid showering him
because it upset him (and me) too much.
It reached a stage where the poor child was only getting showered after
swimming at school (he copes with these showers remarkably better for some
unknown reason) and was simply having bed baths or ‘top and tail’ washes at
home.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I’d looked at the Splashy by Firefly a number
of times online but I wasn’t convinced it would work for us. Hugh has low muscle tone and can’t sit up
independently but he does wriggle and move around a lot. Don’t let the fact he can’t sit fool you into
thinking I could strap him in somewhere and he’d stay still. He’s very
determined and can get himself into all sorts of positions you wouldn’t
imagine. He’s managed to trap his head
under the head rest of his shower chair, he slides his bum down at every
available opportunity so that he slumps and he has a particularly impressive
knack of leaning back or to the side to put his head under water – which
wouldn’t be so bad if he’d only remember to keep his mouth shut and not to
breathe in when he does it! Many of the photos
I’d seen online and the Splashy reviews I’d read made it appear to me that it
was more suitable for children that needed minimal – moderate support in a bath
chair. Hugh needs all the support he can get.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">That said, I was excited when the Splashy
arrived. Not least of all because it meant I might be able to bath Hugh again
at long last, but also because it was the first piece of medical equipment for
the bathroom that didn’t look like it belonged in a hospital! I’ve complained before that for some reason
companies assume that when you become disabled, or have a disabled family
member, that you lose all sense of taste and style. No-one wants their child’s
bedroom or their family bathroom to look clinical, yet the majority of products
do just that. I cried when I first seen
our bathroom after it was adapted. And they weren’t happy tears! It was cold
and white and sterile looking with an ugly big ceiling track hoist and a wipe
down, white, metal bed attached to the wall.<o:p></o:p></span></div>
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<b><u><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Child
Friendly and Fun<o:p></o:p></span></u></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWVi1ZHnM8SNikuNeddU_xTuaXTfASgmPntUhqzFcZPJLKgfNIuwpv6z3OM79Ft9jxhpOMg7nkdrHAnIanm44V2XnTww5fYpEbYdgj05OlMC7e2fAVolxlaKAWezGp13CVfKoKToEClmE/s1600/splashy.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="960" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWVi1ZHnM8SNikuNeddU_xTuaXTfASgmPntUhqzFcZPJLKgfNIuwpv6z3OM79Ft9jxhpOMg7nkdrHAnIanm44V2XnTww5fYpEbYdgj05OlMC7e2fAVolxlaKAWezGp13CVfKoKToEClmE/s320/splashy.jpg" width="320" /></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">In a refreshingly stark contrast to the
clinical look of our wetroom, the Splashy is lime green and turquoise. It looks child friendly and fun rather than
functional and frightening like some of Hugh’s equipment. (Standing frame – I’m
looking at you!). It arrived in a large
cardboard box with a short instruction manual, that even the most incapable of
DIY-ers like myself can follow. It took around 10 minutes to put together. It recommends trying your child in it before you
put them in the bath so you know you have the straps in the right place. I
didn’t, because I’m lazy, but it would be easier if I had. That said, I discovered that, although a bit
fiddly, it wasn’t too difficult to adjust the straps underwater one-handed
either if you need to!<o:p></o:p></span></div>
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<b><u><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Adjusting
the Splashy<o:p></o:p></span></u></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9bcOX3p_7CWAC9ugh-uoDapXKASG-CDokvse2S49Xp5IkyNvhP4aIK6UvoRQpw97jSWe9-53aZfkk8wfdc9zEiAddRbLbcWioV1B2UsFyUVj_f6AxR12FJSlgiNxzDc4Sz1Omk9X2ceg/s1600/seat.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9bcOX3p_7CWAC9ugh-uoDapXKASG-CDokvse2S49Xp5IkyNvhP4aIK6UvoRQpw97jSWe9-53aZfkk8wfdc9zEiAddRbLbcWioV1B2UsFyUVj_f6AxR12FJSlgiNxzDc4Sz1Omk9X2ceg/s320/seat.jpg" width="240" /></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The chair has a great recline function which we
use on its lowest setting but can be adjusted for children that would prefer to
be more upright. It comes with 4 bumpers
which you can place wherever you want to ensure your child has the support they
need. I placed one width ways along the
bottom of the seat to hold his bottom in place and protect his ‘boy bits’ from
the between the leg strap and one along his left side as, due to the curvature
of his spine, this is the way Hugh always leans and slumps. The soft bumper keeps him more upright. It comes with a 5-point harness which can
also be adjusted and positioned to suit the individual needs of your child. Other
fab things we like about the Splashy, is that it is lightweight and compact. We
were even able to take it away on holiday with us. When it’s not in use it folds us neatly and
doesn’t take up much space. The seat also
sits nice and low in the bath which means it takes less water for Hugh to be
immersed. My water meter is pleased by
that although my back isn't. I find it easier if I place a seat beside the bath to wash Hugh as I don't have to bend quite so much then. Another nice touch is that the Splashy comes with a little matching duck. Hugh doesn't seem to understand a lot of verbal communication so we use objects of reference (OOR) to help him understand. The duck makes a fab OOR for Hugh so that he knows he's going to have a bath. <o:p></o:p></span></div>
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<b><u><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Using
the Splashy with a Sling and Hoist<o:p></o:p></span></u></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEge-3Nn_zN63-mGEKDRFkAoiNcEwm_L3wdRGg18eApHaMnvaWwUInv4sXA6JEuxe_ahLk8drLVJ7YzpT28XX3wk39goesuFnG_w4kiKF44xp1fDJNLox0RODVDUMe3nwlm0gsM_siggsg8/s1600/hughsplashy.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="457" data-original-width="470" height="311" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEge-3Nn_zN63-mGEKDRFkAoiNcEwm_L3wdRGg18eApHaMnvaWwUInv4sXA6JEuxe_ahLk8drLVJ7YzpT28XX3wk39goesuFnG_w4kiKF44xp1fDJNLox0RODVDUMe3nwlm0gsM_siggsg8/s320/hughsplashy.jpg" width="320" /></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Hugh is 24kg (around 3 stone 10lb) and far too
heavy for me to lift in and out of the bath so we hoist him in instead. Again, none of the photos I’d seen of the Splashy
showed a child in a sling – I wasn’t sure how this would work. Initially I struggled to hoist Hugh into the Splashy,
remove the sling from the bar, and strap him in. It involved me using one hand to hold him
back to stop him wriggling into the water or headbutting the metal bar (I know
from experience just how painful that is) and the other hand trying to unhook
the sling and wriggle his arms into the 5-point harness and do it up. Not an
easy job to do one handed. The first few
attempts at bathing with the sling were a struggle – I almost hoisted the whole
Splashy out of the bath once when I forgot to unstrap Hugh before attaching the
sling to the hoist. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Trial and error and a quick phone call to Firefly
has helped me find a much simpler way: undo the shoulder straps and use the
toggles to put them back in place once he’s hoisted in and the sling is
unhooked. That way, I can use both hands to secure the belt around his lap,
then unhook the sling and finally strap the top half of his body in. I undo each of the shoulder straps in turn
when needed to wash him as well. To
hoist Hugh out of the bath, I undo both straps before attaching the sling to
the hoist, then undo the lap straps and hoist him out. I’ve also discovered that the little handle
on the back of the Splashy is ideal for hooking the hoist control into.
(Obviously only do this if your control is waterproof like ours).<o:p></o:p></span></div>
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<b><u><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">We
love it</span></u></b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Bath time is so much easier and much more fun
for Hugh now we have the Splashy. He enjoys stretching his legs out and kicking
in the water. It’s simple and easy to use, even with a hoist and sling, and
Hugh sits safely and comfortably in it too. My only real concern is that it won't be long until Hugh outgrows it and, as yet, there is not a larger model available. Overall though, we’re really happy with it and
would highly recommend it. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWczfl-t7_l9bHg0e7o9Ilf3vswWHDBs1UtO20LFykyDxVrLom57JG7pCwbGO5IqXJR6vSt5vUa3lw0-IgK75b8QpZZZuGBSRKzpWUnXt8M-q6pQ5sedSV_vW7wdcVr6LikHhFA3MsP8E/s1600/duck.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1100" data-original-width="1134" height="193" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWczfl-t7_l9bHg0e7o9Ilf3vswWHDBs1UtO20LFykyDxVrLom57JG7pCwbGO5IqXJR6vSt5vUa3lw0-IgK75b8QpZZZuGBSRKzpWUnXt8M-q6pQ5sedSV_vW7wdcVr6LikHhFA3MsP8E/s200/duck.jpg" width="200" /></a></div>
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<u><span style="font-family: "arial" , sans-serif;">The legal bit</span></u><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">Disclaimer: I was provided with a free product
in return for my honest review. All thoughts and opinions expressed herein are
my own and not influenced by Firefly.<span style="font-size: 12pt;"><o:p></o:p></span></span></div>
Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com8tag:blogger.com,1999:blog-3268441232099307652.post-15723374613391460732017-07-20T22:11:00.000+01:002017-07-20T22:12:34.487+01:00How To Talk To A Disabled Child<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIy2_LVwe7XzTjG8qTSTLeB5kOLoS4ToNqvvHgirxm5Sk5dXro8oTI1xqKl-WAQ2nc8RxKmHRIH9jWLfJ1Y1EssBpcq1Z1cHq-4MRFGA0AG1fTOamTh8RB6fDU2ibhEvEG1DmFdMnjfA8/s1600/interpreter-41437_1280.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1280" data-original-width="1126" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIy2_LVwe7XzTjG8qTSTLeB5kOLoS4ToNqvvHgirxm5Sk5dXro8oTI1xqKl-WAQ2nc8RxKmHRIH9jWLfJ1Y1EssBpcq1Z1cHq-4MRFGA0AG1fTOamTh8RB6fDU2ibhEvEG1DmFdMnjfA8/s320/interpreter-41437_1280.png" width="281" /></a></div>
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<span class="s1"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></span></div>
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<span class="s1"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">There are many people
who still don't know how to, or are too scared to, interact with a disabled
child. So, I thought I'd write a post to help explain what to do. Having taught
a multitude of children with varying degrees of disability over the years and
then having had my own child with profound and multiple learning difficulties,
I thought perhaps I could offer a helpful insight in how to interact with
disabled children and show it's really not that scary or difficult after all.</span></span><span class="apple-converted-space"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><o:p></o:p></span></div>
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<span class="s1"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">At first this post was
going to be all about how I understand it can be difficult to talk to Hugh as
people don't always know what to say or what he understands. I was going to
explain that children with English as a second language or very small babies
can't always understand what you're saying but that you'd talk to them
nonetheless. You wouldn't ignore them. I thought about explaining that Hugh
likes you to hold his hand while you talk to him or that you should wait a bit
longer for him to respond as it takes him a while to process things and that
whilst he won't answer with words he will answer with smiles. If you watch him
you will know he is listening. </span></span><span class="apple-converted-space"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><o:p></o:p></span></div>
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<span class="s1"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">But then I thought that
holding hands with another disabled child is actually a real no no- some
children hate to be touched. So, I wondered how to include that too.</span></span><span class="apple-converted-space"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><o:p></o:p></span></div>
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<span class="s1"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Then I realised I was
making it all far too complicated. So, I thought I'd make it simple.</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><o:p></o:p></span></div>
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<span class="s1"><span style="font-family: "arial" , sans-serif;"><span style="font-size: x-large;">Here's my very basic
guide to communicating with a disabled child:</span></span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><o:p></o:p></span></div>
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<span class="s1"><b><u><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Regular* child</span></u></b></span><span class="s1"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
(*typical child, typically developing child, neurotypical child - use as you
feel appropriate. 'Normal' child doesn't tend to be looked on favourably
though)</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><o:p></o:p></span></div>
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<span class="s1"><i><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Imagine a child: your son/daughter or niece/nephew or
grandaughter/grandson or your next door neighbour's kid, or little Timmy from
up the road or that girl standing behind you in the queue in the shop.</span></i></span><i><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><o:p></o:p></span></i></div>
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<span class="s1"><b><u><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">How to say hello:</span></u></b></span><span class="s1"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> smile,
say 'hello (insert name if known)'</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><o:p></o:p></span></div>
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<span class="s1"><b><u><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Disabled* child</span></u></b></span><span class="s1"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
(*special needs child, child with additional needs, neurodiverse child etc you
know which words NOT to use here!)</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><o:p></o:p></span></div>
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<span class="s1"><i><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Imagine a child in a wheelchair, or a child that doesn't
make eye contact, or a child that struggles to stand still or maybe a child
that flaps his hands or a child that makes unusual noises.</span></i></span><i><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><o:p></o:p></span></i></div>
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<span class="s1"><b><u><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">How to say hello:</span></u></b></span><span class="apple-converted-space"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">
</span></span><span class="s1"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">smile,
say 'hello (insert name if known)'</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="s1"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And that's it.</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="s1"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">You see, what it boils
down to is that they're just children, regardless of whether they travel on
wheels, flap their hands, refuse to look at you or make unusual noises.<o:p></o:p></span></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="s1"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Hugh might not say
hello back, but if you give him enough time he'll smile.</span></span><span class="apple-converted-space"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="s1"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Just say hello.</span></span><span class="apple-converted-space"><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
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Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com7tag:blogger.com,1999:blog-3268441232099307652.post-13877930091801128052017-07-14T12:05:00.000+01:002017-07-14T12:39:04.327+01:00The Vagus Nerve Stimulator - is it working?<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdW8NOAbhB6wUVJrvc8b4Be9TyAzYgfwGAK-jFuYFDx7lqzPKmujwojx0rZCyVRWkeaPckN5bTY3wfqX1hRPZTnKfwSivKUMP63dxobeq7T13CYzx-Y-iE9SUehhK7yLndNuxlTAw8JUw/s1600/timehop.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdW8NOAbhB6wUVJrvc8b4Be9TyAzYgfwGAK-jFuYFDx7lqzPKmujwojx0rZCyVRWkeaPckN5bTY3wfqX1hRPZTnKfwSivKUMP63dxobeq7T13CYzx-Y-iE9SUehhK7yLndNuxlTAw8JUw/s320/timehop.jpg" width="320" /></a></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt;">Time-hop is reminding me frequently about how
tough things were for Hugh this time last year and how many hospital trips and
ambulance rides we were taking due to his life-threatening seizures.</span><span style="font-family: "arial" , sans-serif; font-size: 12pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12pt;">He was on a waiting list to have a <a href="http://www.littlemamamurphy.co.uk/2016/09/waiting-for-vns-surgery.html" target="_blank">vagusnerve stimulator (VNS)</a> fitted and the appointment couldn’t come soon enough.
What limited control we’d had over the seizures had gone and they’d become far
more frequent and far more severe – at times not responding to his emergency
rescue medication and at times frightening me beyond my worst nightmare.</span><span style="font-family: "arial" , sans-serif; font-size: 12pt;"> </span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I regularly write about Hugh’s seizures, but I
find it much harder to write when things are more stable. I know that that could change in an instant
and I ridiculously fear that I am tempting fate. Like Beetlejuice or the evil
Candyman from the horror movie, as if by saying it aloud, I’m inviting the
<a href="http://www.littlemamamurphy.co.uk/2012/03/return-of-seizure-monster.html" target="_blank">Epilepsy Monster </a>back into our lives.
I’ve been fooled before you see, many a time, <a href="http://www.littlemamamurphy.co.uk/2013/02/an-unwelcome-return-to-past.html" target="_blank">it never pays to become complacent</a>
with the Epilepsy Monster around! <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">But people keep asking me. And I know people
genuinely care. So, with much touching of wood and blessing myself, in answer
to the question: </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<blockquote class="tr_bq" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif;"><span style="font-size: large;">“Is the VNS working?”</span></span></blockquote>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif;"><span style="font-size: 12pt;">I’d say </span><b><span style="font-size: large;">yes</span></b><span style="font-size: 12pt;">. <o:p></o:p></span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Hopefully,
<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">definitely,
<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">positively,
<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">yes.
<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
think. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">(touch
wood).<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnZoUXzHU01oqnm-PY8eUEF_Z8umvVSOxsgHEL-GourzlPZfhK3x-I2HWWG3-866aeBaA3NlErIUt4c2VlW04D-e9ZFvyx3Ei0dYCBXDhPxycM_A4tQaZvPovlRAyU9VNBnY8AP48Twjo/s1600/VNS.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="488" data-original-width="541" height="288" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnZoUXzHU01oqnm-PY8eUEF_Z8umvVSOxsgHEL-GourzlPZfhK3x-I2HWWG3-866aeBaA3NlErIUt4c2VlW04D-e9ZFvyx3Ei0dYCBXDhPxycM_A4tQaZvPovlRAyU9VNBnY8AP48Twjo/s320/VNS.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://epilepsyu.com/blog/vns-technology-could-help-improve-lives-of-people-recovering-from-stroke/" target="_blank">(Source)</a></td></tr>
</tbody></table>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The VNS is a device implanted under the skin in
Hugh’s chest with electrodes that attach to the vagus nerve in his neck. I think of it as a bit like a pace-maker for
the brain. It sends electrical impulses
to the brain at regular intervals that are designed to interfere with the
erratic brainwaves that cause seizures. The intention being that they prevent a
seizure starting. If a seizure does start,
we have a magnet which we swipe over the device in Hugh’s chest. This causes a boost of electricity which is set
at a slightly higher rate than the regular current. The hope is that this surge
will stop the seizure or at least shorten its duration. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Initially I’d noticed an improvement in his
night time seizures. We don’t worry too much about them generally; they don’t
appear to bother Hugh, he is generally happy if a little spaced-out throughout
them, his oxygen levels are fine, his heart rate only slightly elevated. After the VNS was implanted we noticed they
were shorter and not quite every night. However,
swiping the magnet didn’t seem to stop them when they did start.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The key hope for the VNS was that it would
reduce the frequency and severity of his big seizures – the life threatening,
not breathing ones. These are the
seizures that put him in hospital so frequently. These are the seizures that
completely rule our lives. During one of
these ‘apnoeic seizures’ as the doctors refer to them, Hugh completely stops
breathing. His brain just doesn’t tell
him to breathe any more. In some seizures, the person is too stiff to breathe –
the brain wants to breathe but the body can’t. Generally, these are short (less than 60 seconds, according to <a href="https://www.epilepsy.org.uk/info/seizures/tonic-seizures" target="_blank">Epilepsy Action</a>). In other seizures breathing is impaired, the
person continues to breathe but not as effectively, they may go blue around the
lips. Hugh’s are different to this – he
simply stops breathing altogether and doesn’t start again until the seizure
stops. This can be one minute, or five minutes or at its worst 16 minutes. I’ve googled how long you can stop breathing
for … well, the odds aren’t in Hugh’s favour. We use a bag and mask or good old mouth to
mouth to keep Hugh alive until the seizure stops. You can see why we had our hearts set on VNS
helping stop these!<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Unfortunately, <a href="http://www.littlemamamurphy.co.uk/2016/10/seizure-watch_17.html" target="_blank">the first big test for the VNS </a>came
just 6 weeks after it had been switched on.
It didn’t appear to help. There’s a lot of fine tuning and adjusting of
settings with the VNS – changing the frequency, duration and strength of the
electrical boosts – so I excused this fall at the first hurdle. The settings
could be changed, it was early days yet.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And then it happened again. Way quicker than I
expected. Way sooner than was usual. And the VNS didn’t seem to have helped too
much. And I made some more excuses,
determined not to give up hope.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">By February, 6 months after the VNS was fitted,
Hugh was having his big life-threatening seizures monthly, although the
shortest interval was as little as 10 days.
I was gutted. Rather than reduce the frequency, the VNS seemed to have
increased it. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">On reflection though I realised something
vital. Although Hugh had been having
these seizures more frequently and had been hospitalised on many occasions, he hadn’t
actually had any intravenous (IV) anti-epileptics since before the VNS had been
fitted. This was a big step. The usual
route for us would be 2 doses of midazolam within 24 hours at home, ambulance,
hospital, possible further dose of midazolam, IV lorazepam, IV phenytoin. And
then they’d finally stop. Since the VNS
we’d not gone further than 3 doses of midazolam in 24 hours and on a couple of
occasions we’d been able to manage his care at home.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif;">I
weighed it up. <i style="font-size: x-large;"><o:p></o:p></i></span></div>
<blockquote class="tr_bq" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif;"><span style="font-size: large;"><i>Which is better: more frequent and less severe
OR less frequent and more severe? </i></span></span></blockquote>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">It
seemed the VNS was doing something. The frequency wasn’t ideal and made life,
if possible, even more unpredictable, but the ability to keep him out of
hospital and cope at home without IV drugs was a plus.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">We’ve had the VNS settings altered a good few
times now. I think he’s currently
getting an impulse sent to his brain just over every minute with each impulse
lasting 30 seconds. The VNS has got lots
of different combinations of settings so there’s still lots of tweaking that
can be done. Hugh’s neurologist reminded
me in our last appointment that it can take a year to two years to fully see
the benefit of the VNS.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif;"><span style="font-size: large;">In
May we took a giant leap forward.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Let me set the scene… It’s 4am and Hugh’s Sats
alarm goes off (it monitors his oxygen levels overnight). I trundle in,
irritated by the alarm, assuming it’s a false one caused by wriggling toes (we
get that a lot). Hugh is still, too still. I switch on the light. Hugh is blue.
Autopilot kicks in. I switch on the oxygen, grab the bag and mask and start
resuscitating him. There’s midazolam by
his bed (the rescue medication that stops the seizure) I grab it ready knowing
that as soon as I get colour back in his face I’ll give it. Just to explain (and possibly complicate matters)
– for Hugh, the seizure itself isn’t the real problem, it’s the fact that the
seizure causes him to stop breathing. No oxygen in his body is the problem. So,
the plan is to get the oxygen in (via mouth to mouth or bag and mask) and once
he’s a colour closer to pink try and stop the seizure with the rescue
medication. When the seizure stops he’ll (hopefully) start breathing again. Sometimes it’s easier than others to get
oxygen in to him. Sometimes he’s too floppy, his airway partially closed,
making it hard to get air in. Sometimes he's so stiff, his ribs rigid, making it
impossible to get his lungs to inflate.
I won’t lie, I panic then. These times terrify me. When you’re taught CPR and basic life support,
it’s assumed the patient is unconscious and still. Hugh’s not like the plastic
doll you get to practise on. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Anyway,
back to the point … <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0qsdHzOn43h2Fs3E4LHraX37Px4GBImvVFdvD16ms-pzdgMoKBOXBRzBuXQOve-qnbpANTvfKg8wAoIG8wFrYU9kdW0EvVw5uoGMNVtYaDbZzSJBIKOvMN1g_D0zHbj9QZIDbme59agw/s1600/sats+monitor.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0qsdHzOn43h2Fs3E4LHraX37Px4GBImvVFdvD16ms-pzdgMoKBOXBRzBuXQOve-qnbpANTvfKg8wAoIG8wFrYU9kdW0EvVw5uoGMNVtYaDbZzSJBIKOvMN1g_D0zHbj9QZIDbme59agw/s320/sats+monitor.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;">Our weapons of mass destruction (l-r); <br />midazolam, sats monitor, VNS magnet, <br />bag&mask</span></td></tr>
</tbody></table>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I’m resuscitating Hugh and he has such a lovely
pink colour in his cheeks that I think for a second he might be breathing
again. I check and he’s not, but I know
I’ve got time. Time to try the magnet. The magnet I don’t really trust, the
magnet that doesn’t seem to do much on even the most basic of Hugh’s seizures.
It’s there at the end of his bed. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">So,
I try it.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
swipe him.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Once,<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Twice,<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Three
times.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">As
I’ve been taught.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">As
I’ve done countless time before on less severe seizures to no avail.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And
Hugh coughs.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And
takes a breath<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And
the seizure stops.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Just
like that.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Of
course, I assume it’s a fluke. The seizure would have ended anyway.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I
know there’s another one coming. There always is. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">So,
when at 6am it hits again, I’m ready.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And
this time Mr. M swipes while I resuscitate.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And
Hugh coughs.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And
takes a breath.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And
the seizure stops.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And
again at 8.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Swipe.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And
cough.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And
breathe…<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Just
like that.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Hugh
slept for 4 hours and woke up fine. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Absolutely
fine. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And
stayed fine.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<blockquote class="tr_bq">
<span style="font-family: "arial" , sans-serif; font-size: large;">This
is monumental!</span></blockquote>
</div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Normal protocol would have had me calling an
ambulance at 6am. He’d have been in resus by 6.45 having a line fitted. The 8am seizure would have required lorazepam
or phenytoin. The seizures would have stopped but he’d have been kept in overnight
for observation. I’d have probably taken
him home lunch time the following day.
He’d have been groggy for a couple of days – a side effect of all the
drugs, sleeping more than usual. He’d
have missed at least half a week of school. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Instead, thanks to the magnet, he woke
refreshed and happy and would have been able to return to school the next day
(although I kept him off just to be on the safe side).<o:p></o:p></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<br />
<blockquote class="tr_bq">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">So, Yes. I'm happy to conclude that the VNS does seem to be working for Hugh.</span></blockquote>
</div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Eight weeks have passed since then. I suspect there is another big seizure on the
horizon. There always is. It doesn’t pay to get too complacent with the Epilepsy
Monster around.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And yet, maybe, just maybe, we’ve another way
of controlling it. A way with less side
effects. A way that can potentially keep Hugh out of hospital. I’m not foolish enough to think all our
problems are over, but it’s reassuring to know that we do have another weapon
in our armoury for when the Epilepsy Monster returns.<o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcrS0t7J6qIXdCpeaA1mUMvglISfP0KiPnHQ36zmQEDkpLvJnxrncuvYOkGb13c6-8npDUPZrgh3JMbQcu7eLDQdXIfoL6wduBFwAqtZO1Aesf2ri6Sg8ygoop-KHX2kpteyEICmxQBQY/s1600/candyman.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="394" data-original-width="700" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcrS0t7J6qIXdCpeaA1mUMvglISfP0KiPnHQ36zmQEDkpLvJnxrncuvYOkGb13c6-8npDUPZrgh3JMbQcu7eLDQdXIfoL6wduBFwAqtZO1Aesf2ri6Sg8ygoop-KHX2kpteyEICmxQBQY/s400/candyman.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">If Epilepsy were a person ... <a href="http://www.dreadcentral.com/news/197296/director-bernard-rose-interested-proper-sequel-candyman/" target="_blank">(source)</a></td></tr>
</tbody></table>
<div class="MsoNoSpacing">
<br /></div>
Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com8tag:blogger.com,1999:blog-3268441232099307652.post-88377314753128110212017-05-31T20:02:00.000+01:002017-05-31T20:02:34.168+01:00These Are No Ordinary Wheels<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizhkcBMBt5-Nw5z2n-FFDOByvNfyyCvuM33sn97Xuzw6tFEni_2fj6URh-Rexhf_BTW3s04Wf9i2hxaFSbZyKTKkXv72eXhPJj8LFNukxsVDjo6wyU2a5yK9xGChyphenhyphenulOTiju5nDFac_fI/s1600/HughWheels.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1466" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizhkcBMBt5-Nw5z2n-FFDOByvNfyyCvuM33sn97Xuzw6tFEni_2fj6URh-Rexhf_BTW3s04Wf9i2hxaFSbZyKTKkXv72eXhPJj8LFNukxsVDjo6wyU2a5yK9xGChyphenhyphenulOTiju5nDFac_fI/s320/HughWheels.jpg" width="293" /></a></div>
<div class="p2" style="text-align: justify;">
<br /></div>
<div class="p1" style="text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;"><span class="s1">These are the 'pimped up' wheels of Hugh's R82 Kudu wheelchair. A friend designed them especially for Hugh - they're completely one of a kind.</span></span></div>
<div class="p1" style="text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;"><span class="s1"><br /></span></span></div>
<div class="p1" style="text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;"><span class="s1">These wheels catch
the eye of many a child (and adult). They run over to point out their favourite
super hero and try and name them all. (Go on try - most people will get 5 easily, some 6. If you can get all 8 you're a true super hero fan!-
answers at the bottom). If children are staring (as sometimes they do), perhaps
trying to work out why he's sitting and not running, rather than feel awkward I
can point to the wheels and say 'have you seen his cool wheels?' It's an
icebreaker. For the children and their parents.</span><o:p></o:p></span></div>
<div class="p1" style="text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;"><span class="s1"><br /></span></span></div>
<div class="p1" style="text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;"><span class="s1">We chat about Hugh's
favourite super hero (it's Captain America) and the films we have seen.
Throughout it all Hugh smiles (or sleeps) but there's a connection there. This
is a little boy who likes superheroes. Not a little boy in a wheelchair or a
little boy with a feeding tube. He likes superheroes, just like me.</span><span class="apple-converted-space"> </span><o:p></o:p></span></div>
<div class="p2" style="text-align: justify;">
<br /></div>
<div class="p1" style="text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;"><span class="s1">I love that about
these wheels. Hugh can't talk but they do the talking for him. They start the
conversations for him. They help people see him, first and foremost, not his
disability. They make being in a wheelchair cool. They help to include him.</span><span class="apple-converted-space"> </span><o:p></o:p></span></div>
<div class="p2" style="text-align: justify;">
<br /></div>
<div class="p1" style="text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;"><span class="s1">The thing is though,
Hugh grabs the wheels a lot while we're walking. I'd hoped he'd self propel
slightly but he's not reached that stage at all. Instead he just holds on. And
that's dangerous, because the wheels are turning. So we're looking at different
wheels. Smaller wheels. Wheels he can't reach. But also, sadly, wheels that
won't have super heroes on.</span><span class="apple-converted-space"> </span><o:p></o:p></span></div>
<div class="p2" style="text-align: justify;">
<br /></div>
<div class="p1" style="text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;"><span class="s1">No, these wheels
don't just get Hugh from A to B, they're a conversation starter, they're a
stare-explainer, they're a connection with his peers, they aid inclusion,
they're the start of friendships. </span></span></div>
<div class="p1" style="text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;"><span class="s1"><br /></span></span></div>
<div class="p1" style="text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;"><span class="s1">I'll be gutted when they go.</span><span class="apple-converted-space"> </span><o:p></o:p></span></div>
<br />
<div class="p2" style="text-align: justify;">
<o:p><span style="font-family: Arial, Helvetica, sans-serif;"> <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0XtdGOrrBzBrcejtC2O4wq6t93MdcHVHct1rg-BKolHq65KPx3a7zNiPToJ8DF2BjyFXeRmtdm2IN69JvFh0wbQ4do89VA9T-JClaScwiB8X8wQyiwCRtKnTFDaWPa9niW-HtaIs_hHw/s1600/hughcap.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="959" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0XtdGOrrBzBrcejtC2O4wq6t93MdcHVHct1rg-BKolHq65KPx3a7zNiPToJ8DF2BjyFXeRmtdm2IN69JvFh0wbQ4do89VA9T-JClaScwiB8X8wQyiwCRtKnTFDaWPa9niW-HtaIs_hHw/s320/hughcap.jpg" width="319" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hugh as his favourite - Captain America</td></tr>
</tbody></table>
</span></o:p></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;">From the top, clockwise: The Flash, Superman, Captain America, THe Hulk, Iron Man (it's his power source - most people get stuck on that one), Spiderman, Green Lantern (another tricky one) and Batman.</span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;">How many did you get?</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com3tag:blogger.com,1999:blog-3268441232099307652.post-37747859501980657562017-05-27T17:02:00.001+01:002017-07-05T00:18:01.106+01:00Communicating without words<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRAfjRD50ELGQxq2t7FJBMp3GszhEAIsg8-BJx1ykOwOIKeZHxXaoxDHl_Z8EKO0T0iIPBejXtRI0rsVZYUnydAul3PTuXWdzfS8gn-neg9CfdFjX1ZhTRIxoFfrgWTntyY3NK5lW7dIU/s1600/australia-1385286_1920.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="845" data-original-width="1600" height="169" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRAfjRD50ELGQxq2t7FJBMp3GszhEAIsg8-BJx1ykOwOIKeZHxXaoxDHl_Z8EKO0T0iIPBejXtRI0rsVZYUnydAul3PTuXWdzfS8gn-neg9CfdFjX1ZhTRIxoFfrgWTntyY3NK5lW7dIU/s320/australia-1385286_1920.jpg" width="320" /></a></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt; text-align: justify;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; text-align: justify;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12pt; text-align: justify;">I had the absolute pleasure of attending one of
Jo Grace’s training sessions ‘Sensory Lexiconary’ this week.</span><span style="font-family: "arial" , sans-serif; font-size: 12pt; text-align: justify;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12pt; text-align: justify;">I’ve been a fan/stalker of Jo’s for some time.
</span><span style="font-family: "arial" , sans-serif; font-size: 12pt; text-align: justify;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12pt; text-align: justify;">She creates wonderful sensory stories,
is a wealth of knowledge on profound and multiple learning difficulties (PMLD)
and she freely shares creative and clever tips that can be used by parents and
professionals alike.</span><span style="font-family: "arial" , sans-serif; font-size: 12pt; text-align: justify;"> </span></div>
<div class="MsoNoSpacing">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikU0W9UqgrkdR763mOKF-_fWAqzAup_kxKQCEGvYYYPUPPIpBP8EEQkBbJ-Zg4YHlIZtdCmE5o8GSNZhyi5oyxKUC-3h3lPmER8zPBDi3T-FhklUJtQAag3pKD6q67gSbVaNUTzoChsoQ/s1600/fibreoptics.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikU0W9UqgrkdR763mOKF-_fWAqzAup_kxKQCEGvYYYPUPPIpBP8EEQkBbJ-Zg4YHlIZtdCmE5o8GSNZhyi5oyxKUC-3h3lPmER8zPBDi3T-FhklUJtQAag3pKD6q67gSbVaNUTzoChsoQ/s320/fibreoptics.jpg" width="240" /></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">To say I was inspired by the training is an
understatement. There were times I was
genuinely moved to tears. I left that
day full of hope and full of ideas as well as reassured that I am already doing
quite a good job raising Hugh. It was lovely to see his little face smiling at
me from one of the very first slides on the presentation, as Jo recounted the
story of how we had persevered with various activities to stimulate his vision,
such that he progressed from a new-born unable to differentiate light and dark
to a young boy with enough functional vision to benefit from wearing glasses. <a href="http://www.littlemamamurphy.co.uk/2015/11/seeing-and-believing.html" target="_blank">(You can read the full story here).</a><o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I have scribbled pages and pages of notes from
the training but I’d like to share some of the key points that I found so
inspiring. This is only a very, very small
part of what was covered, but as I put into practise other key suggestions of
Jo’s I will share them with you. (crediting Jo of course).<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<u><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Sensory
Beings vs Linguistic Beings<o:p></o:p></span></u></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The term profound and multiple learning
difficulties focuses on what is ‘wrong’ with the individual. It’s why, when
Hugh was younger, I kept interrogating the paediatrician, terrified he would be
labelled as ‘PMLD’. Profoundly disabled really does sound quite scary and it
can be hard to equate that label to my happy boy who loves the feel of the wind
in his hair, who laughs at silly noises and finds endless delight in balloons.
Jo uses the term ‘Sensory Beings’ instead. It describes a person who experiences
and interacts with the world in a sensory way.
They live in the moment. It can also be appropriately used to describe young
babies and those with late stage dementia.
She explains that the rest of us are ‘lingusitic beings’, that we use
words to interact with the world. Unlike
the term PMLD, there is no judgement about which is better. Whether sensory or
linguistic they are both equal but different ways of experiencing the
world. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">For
example…<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">If I go for a walk with Sean, my 8 year old,
neuro-typical/linguistic child, the walk would have a purpose – to get
somewhere. We would chat easily, taking
turns in the conversation. Invariably it
would be about fidget spinners at the moment (never thought I’d miss the days
he talked endlessly about Minecraft). We might spot things along the way and
acknowledge them – he usually points out sports cars or adverts on buses for
films he wants to see.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY0pNn7iDZr8nXw3521e_FQWvbO8LskqjGnLKt5yin97wTvixB6rtmcAALtT9t1SIk3Wwj7Ui7RnaLHEgnRF5zifBnlMUPIFmXrNKsbu1IqfSMBgOMLq5FlS7Afjl6YZxQcUDoU7Abzic/s1600/Hughgeese.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY0pNn7iDZr8nXw3521e_FQWvbO8LskqjGnLKt5yin97wTvixB6rtmcAALtT9t1SIk3Wwj7Ui7RnaLHEgnRF5zifBnlMUPIFmXrNKsbu1IqfSMBgOMLq5FlS7Afjl6YZxQcUDoU7Abzic/s320/Hughgeese.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">A walk with Hugh is different (not least
because he won’t be doing any of the walking).
The walk <b>is</b> the purpose. Although I talk and point out things around
us, he can’t verbally respond. Aware
that Hugh processes things more slowly, we pause often. I notice things, sounds
and smells that I’m rarely aware of when I’m rushing about day to day. We can spend ages sitting in companionable
silence at the side of the pond, listening to the water lapping at the edges,
the leaves rustling as the breeze passes gently through them, the different sounds
and pitches of bird song, children playing in the park. Together we feel the sun on our faces and the
wind in our hair, the smell of grass that has been cut and is drying in the sun
(a smell very different to freshly cut grass), the earthy smell of the mud
around the bottom of the trees. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="margin-left: 36.0pt;">
<u><span style="color: #002060; font-family: "arial" , sans-serif; font-size: 14.0pt;">Mindfulness:</span></u><span style="color: #002060; font-family: "arial" , sans-serif; font-size: 14.0pt;"> p<span style="background: white;">aying more attention to the
present moment – to your own thoughts and feelings, and to the world around you</span><o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="margin-left: 36.0pt;">
<span style="background: white; color: #002060; font-family: "arial" , sans-serif; font-size: 14.0pt;">"An important part of mindfulness is reconnecting with
our bodies and the sensations they experience. This means waking up to the
sights, sounds, smells and tastes of the present moment. That might be
something as simple as the feel of a banister as we walk upstairs.</span>”<o:p></o:p></div>
<div align="right" class="MsoNoSpacing" style="text-align: right;">
<span style="background: white; color: #333333; font-family: "arial" , sans-serif; font-size: 10.0pt;">Mark Williams, former director of the Oxford Mindfulness<span class="apple-converted-space"> </span><o:p></o:p></span></div>
<div align="right" class="MsoNoSpacing" style="text-align: right;">
<span class="apple-converted-space"><span style="background: white; color: #333333; font-family: "arial" , sans-serif; font-size: 10.0pt;"><a href="http://www.nhs.uk/Conditions/stress-anxiety-depression/Pages/mindfulness.aspx" target="_blank">Source: NHS</a><o:p></o:p></span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span class="apple-converted-space"><span style="background: white; font-family: "arial" , sans-serif; font-size: 12.0pt;">It’s interesting to see that whilst many of us linguistic
being are downloading apps like headspace or attending courses to improve our
mindfulness, and in turn our mental wellbeing, sensory beings like Hugh are
inherently mindful. Hugh, in turn, is
teaching me to be mindful. (Which is a good job really, as I haven’t managed to
get past day 4 of the app yet).</span></span><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<u><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Having
a conversation with a sensory being<o:p></o:p></span></u></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">How though, do you have a conversation with a sensory
being? The truth is, I do find it hard
that Hugh will never call me Mum, he’ll never say he loves me. Sometimes the silence between us is
deafening.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Jo spoke about the colloquially termed ‘mother-ease’
language and how this early sing-song speech used with babies is easier to
process. (You don’t have to say baby
things or made up words). She explained too
about the importance of leaving enough time for them to process what has been
said. These are both certainly true for
Hugh. I remember taking him to lunch
with some friends of mine and one, an educational psychologist, pointing out
how we all naturally addressed him in a more ‘sing-songy’ voice and how he’d recognise
this part of the covnverstaion was addressed to him and smile. Yet he’d tune out as we discussed our own
day-to-day lives. (Which is probably just as well!) I was reassured that it wasn’t patronising to
speak to Hugh in this way at 7 years old, but was actually helping him to process
language.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><i>But
Hugh doesn’t answer, so how is this a conversation?</i><o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Well here’s where Jo explained we have to be
aware of our linguistic bias – our belief in the importance of words. A conversation is simply the exchange of
meaning and for Hugh, this is done entirely without words. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Whilst the walks I described above differed immensely,
in each I was able to connect with my children. With one, I could have endless meaningful
(ahem) conversations about fidget spinners, with the other we could share the
sounds and smells around us.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I contacted Jo after the training to tell her
how inspired I was, I wrote:<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<blockquote class="tr_bq" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">“There were times in your training that I
genuinely had to swallow back tears. I
found it enlightening, inspiring and reassuring. It gave me hope. It reminded me that the connection I have
with Hugh is meaningful. That ‘conversations’
don’t have to use words. That he tells me he loves me a million times a day, in
his own way. Living in a society that
values the linguistic experience so much and emphasises what is said, it can be
hard to remember that”.</span></blockquote>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOeOAYmYBPM7LS-OXWTSzK0SZZd6s7qthMCmyolB4J8GbSE_7RSgnOFzcGPc8gP_FlnVpaaKuEpyAuS4gbdn-axsGIbOjtOYKAhE71VnCuoBnVTTteW-joXE_ESHmiYKKeww4OJ_NCtAE/s1600/mehugh.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="640" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOeOAYmYBPM7LS-OXWTSzK0SZZd6s7qthMCmyolB4J8GbSE_7RSgnOFzcGPc8gP_FlnVpaaKuEpyAuS4gbdn-axsGIbOjtOYKAhE71VnCuoBnVTTteW-joXE_ESHmiYKKeww4OJ_NCtAE/s320/mehugh.JPG" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKMOlyP52UhqfAetOt1XvhIk2LfV48kmbDnLcG2RTZx1PMkOsGMZcFS6cp-t-1n_lBgtmwWTSesrBFjmZjDk2CdGUKCuzirbNQDmyA8nLmaSEcT0lGwLRwU-TThnipMLo56lDTFsn-VX8/s1600/meandjo.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="440" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKMOlyP52UhqfAetOt1XvhIk2LfV48kmbDnLcG2RTZx1PMkOsGMZcFS6cp-t-1n_lBgtmwWTSesrBFjmZjDk2CdGUKCuzirbNQDmyA8nLmaSEcT0lGwLRwU-TThnipMLo56lDTFsn-VX8/s200/meandjo.jpg" width="137" /></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt;">If you want to connect with Jo (and stalk her
like I did) you can find her on <a href="https://twitter.com/jo3grace?lang=en" target="_blank">twitter here.</a> Details of future
training can be found on her <a href="http://jo.element42.org/" target="_blank">website here.</a></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">There’s so much more to share, not least of
which is how hope can be found in an empty pringles tube, so I promise to share
more, (if Jo will let me).<o:p></o:p></span></div>
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Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com0tag:blogger.com,1999:blog-3268441232099307652.post-76655945513622711862017-03-20T23:25:00.001+00:002017-07-05T00:24:08.105+01:00Looking for Patterns<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0_YNoEcIXmS0lEuSSACs51FpxJnvxamEJFEYVOReo8nfIajhDMxiPQ_JxZznUvdpVmcJ8Hng622k7I9ycf3oYlfZFgMQaKfdhdHmeH9pUBqg8Jowkt46NfH9_RcJPl52mE65O5gWUVhQ/s1600/snail-shells-65358_1920.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0_YNoEcIXmS0lEuSSACs51FpxJnvxamEJFEYVOReo8nfIajhDMxiPQ_JxZznUvdpVmcJ8Hng622k7I9ycf3oYlfZFgMQaKfdhdHmeH9pUBqg8Jowkt46NfH9_RcJPl52mE65O5gWUVhQ/s200/snail-shells-65358_1920.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<div dir="ltr" style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">When Hugh was little we tried to work out why his seizures were happening, what was causing them. Sometimes we attributed them to illness- an underlying chest infection, brewing chicken pox, sickness and diarrhoea. Other times it seemed to be pain related- teething seemed to bring them on. But often, and increasingly so as he got older, there was no obvious trigger, nothing we could pinpoint that was the cause. They just seemed to happen. So instead we looked for patterns, attempting to find order, to give ourselves a sense of control over something which we really had no control over at all.</span></div>
<div dir="ltr" style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div dir="ltr" style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Recently our pattern appeared to be about every three months Hugh would have a big-not-breathing seizure. He'd invariably be hospitalised and more often than not require IV drugs to stop the pattern. We'd have 3 bad days- he'd need resuscitating anywhere between 6 and 20 times over that 3 day period. He'd be out of sorts for a couple of days, extra sleepy or with lots of other types of seizures- ones where he was at least breathing but were still really horrible to watch. Sometimes the gap between his not breathing episodes would be longer than three months- we'd be delighted of course, but I'd be looking out for them from three months on, half waiting for them to happen. </span></div>
<div dir="ltr" style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div dir="ltr" style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">There was some comfort in that partial predictability. It wasn't clockwork, far from it, but I sort of accepted that every three months or so we'd hit a bad patch. Maybe comfort isn't quite the right word, but after a hospital admission, once the horrors had dissipated, I'd feel like we'd be in a 'safe' period. The E monster had been, we'd defeated him thankfully, he'd be back of course, but for now we could live again without his shadow looming over us. </span></div>
<div dir="ltr" style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div dir="ltr" style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Lately though, that's gone. There is no pattern to cling to and therefore no 'safer' period. There's no rhyme or reason to them at all. In the last six months, the longest gap between big seizures has been 8 weeks, the shortest 10 days. They've happened in the morning, mid afternoon and in the dead of night. Sometimes he's awake, sometimes he's asleep. There's even been completely isolated incidents which haven't progressed into 3 day affairs- something that hasn't happened for years. Sometimes they've even stopped by themselves- he's still needed resuscitating but they've stopped before the rescue medication was given- he's not done that since he was about 1! </span></div>
<div dir="ltr" style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div dir="ltr" style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Hugh had a big seizure this morning. He wasn't breathing for about 4 minutes. When the midazolam wore off and he woke up he seemed fine. 18 hours later and there's been no more. Under the old rules I know he would be in hospital by now or we'd be heading there later tonight. The hospital bag is packed and ready for that scenario, just in case. But he's been really, really well today- happy, smiling, no sign at all that anything has happened and going by recent incidents, this could be a completely isolated event. In which case, there's actually no reason why he can't go back to school tomorrow. </span></div>
<div dir="ltr" style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div dir="ltr" style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">So I've got his hospital bag ready and his school uniform out. </span></div>
<div dir="ltr" style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div dir="ltr" style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">And I genuinely have no idea which way it will go. </span></div>
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Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com0tag:blogger.com,1999:blog-3268441232099307652.post-57060843146246944422017-02-25T16:52:00.002+00:002017-07-05T00:24:49.476+01:00The Big Build For Hugh …the final hurdles<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt;">It’s been a while since I updated you all on
the #BigBuild4Hugh so I thought I’d update you and show you a few sneaky
pictures.</span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The run up to Christmas was fraught with
anxiety. It really was all hands on deck
to try and<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyhnFmBFi_iS39AeVSgGGqL7iTyG7-gEPiADEmSdPKBFkwyDok8fSdCQZRaFVpO7uDTInb-xNRfIwm1kGlIqG3UCwc-iU_WICzesnqfa52pseD1hgwqHxg4YJFnVmHXwztUDGAxRfAb5M/s1600/ElvisWorking.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyhnFmBFi_iS39AeVSgGGqL7iTyG7-gEPiADEmSdPKBFkwyDok8fSdCQZRaFVpO7uDTInb-xNRfIwm1kGlIqG3UCwc-iU_WICzesnqfa52pseD1hgwqHxg4YJFnVmHXwztUDGAxRfAb5M/s320/ElvisWorking.jpg" width="233" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Even Elvis the Elf had to pull his weight</td></tr>
</tbody></table>
get the place liveable in time for our family who were arriving from
Ireland. It was only with the help of
some good friends </span><br />
<a name='more'></a><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">that we managed to have light in the kitchen – until that
point, we’d been using floodlights! I had visions of us sitting down to
Christmas dinner like that. Thankfully,
come Christmas day, we had a working oven, lights, a fridge and somewhere to
sit and eat.<o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The last of the woodwork was completed just
after the Christmas holidays and I’m now happy to say that we have a fully
functional house that, all bar a few finishing touches, is more or less
finished. There’s still a few wires
hanging that need switches and thanks to a mix up with the circuits, we can no
longer use the hoist in the bathroom, so Hugh can’t have a bath – fingers
crossed we’ll get that fixed soon.
There’s a bit of plastering to be done and a fair bit of painting, but all
in all, it’s looking good and we’re delighted.<o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The difference it has made to our lives is
immeasurable. In no particular order (OK
maybe the cupboards ARE my favourite), here’s the best things about the new
house…<o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<u><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The cupboard space<o:p></o:p></span></u></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I remember watching an episode of DIY SOS and
they made a designated space for the family to mix the child’s tube feeds. I desperately wanted that. Our kitchen was tiny, there was barely any
surface space and mixing feeds was a nightmare.
Storing them even more so. I kept
the milk feeds under the bed or piled up in the bathroom. The plastic containers and giving sets (the
tubes used to pump the milk into Hugh’s stomach) were kept in plastic
containers in plastic sheds in the garden.
The reason for the double layer of plastic was the fact snails eat
cardboard! Who knew? I discovered holes
in the boxes containing Hugh’s medical supplies and after investigation found
that the snails had been feasting on it.
After that, each month I would open the 16 boxes and decant them into
plastic boxes, taking inside only what I could reasonably fit in my kitchen.
Which wasn’t much! Regularly, you’d find Mr. M and I doing ‘rock, paper,
scissors’ to see whose turn it was to traipse up the garden in the
cold/rain/snow/mud to get supplies for the night after we’d unexpectedly run
out. Fun times! <o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And the equipment – the huge chairs, of which
there are many, littered the house and the boot of the car! It was like a game of tetris trying to find
space to put one chair after another.
Hugh has a wheelchair for outside, a three-wheeler offroad wheelchair
for the woods and muddy football pitches, an indoor supported seat, an enormous
bean bag (his comfy arm chair so to speak – no one wants to sit bolt upright
all the time) and a shower chair. These are the essentials. Some the size of a big arm chair (I’m looking
at you P Pod). Imagine trying to find
space to put 5 extra arm chairs in your house. (Here’s how – 1 in the bathroom,
1 in the boot of the car, 2 in the living room, 1 in the hall/bedroom –
depending on whether you needed to get past it/use the bedroom). <o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">So, that was before … now -I have designated
cupboards for all those things! I have
space for all the chairs and all the feeding equipment. I don’t have to go into the garden to get
Hugh’s feed ready and I don’t have to store wheelchairs permenantly in my car.
It’s actually life changing. I know that
sounds a bit melodramatic, but honestly, the extra space is invaluable. I even posted a facebook status update with
photos of my cupboards (see below) and the response was amazing – so many
people struggling to find space for all the extra equipment that comes with
having a disabled child. <o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCtEGy7cpUxjfSb8apQRQZgXfQpaavxWAraGEiMyLqnNNVQ3lQ6Cs1DLFrOWKncDAitjTUmzSb1QAah4YuDDtbFI9I_Dc0WwNb6-y9AvoKnV7bFh1emQenSU3ZdDIs-T97rYybOhA1VUg/s1600/cupboards.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="281" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCtEGy7cpUxjfSb8apQRQZgXfQpaavxWAraGEiMyLqnNNVQ3lQ6Cs1DLFrOWKncDAitjTUmzSb1QAah4YuDDtbFI9I_Dc0WwNb6-y9AvoKnV7bFh1emQenSU3ZdDIs-T97rYybOhA1VUg/s320/cupboards.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ok, so maybe the cupboards are my favourite… but look at them… what’s not to love?</td></tr>
</tbody></table>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"> </span><span style="font-family: "arial" , sans-serif; font-size: 12pt;"> </span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<u><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Family Room<o:p></o:p></span></u></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Wasn’t really sure what to call it, but that’s
what the architect referred to in his plans.
It’s basically a kitchen/dining/living area – a big open plan space
(with an island!) that has enough space to comfortably move Hugh around in the
biggest of his chairs, without having to move furniture to do so. We can put Hugh’s bean bag between the arm
chairs so he sits next to us while we watch TV together, rather than him stuck
out on the edge on his own. He can be
playing on his mat on the floor and I can make the dinner whilst watching him
and whilst listening to his brother read.
Hugh couldn’t fit into our kitchen before so I was forever running in
and out to check on him and I regularly made Sean sit on the floor in the
kitchen to do his reading so I could get on with dinner. On Christmas morning, Hugh had a bit of a
funny turn, he was unresponsive and dazed and kept having prolonged absence
seizures. We suspected he was heading
for a bout of his bad seizures – the not breathing, call an ambulance kind – so we put his hospital bag by the door and had the oxygen and medicine we needed
ready. The thing was, it was Christmas,
and dinner still needed to be cooked – we were due a houseful in a few
hours. In the last house, this would
have been very problematic, Hugh can stop breathing instantly without warning,
so we watch him closely at the best of times, but when we have warnings like
this you literally can’t leave his side, just in case. Thankfully, because of the size of the
kitchen, I was able to just park him up beside me in his bean bag while I
carried on getting dinner ready. Sean
could have Daddy all to himself to play his new Christmas Xbox games – the last
thing we wanted was to spoil his Christmas. As it happened Hugh snapped out of it and was
fine (maybe due to the VNS -who knows? A post for another day) but there’s been
lots of similar occasions since that have really made me appreciate so much
space in one room. <o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
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<u><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Hugh’s bedroom<o:p></o:p></span></u></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">We’ve moved the front door to the extended part
at the side of the house and by knocking down a wall, Hugh’s bedroom has gained
the space from the hallway, where the original door was. I didn’t think it would make much difference
to be honest but it seemed a better use of space than making another
cupboard. Plus, he’s getting bigger and
his hospital style bed is going to get bigger so we knew we’d probably need a
bit more room in the long run. The difference it has made is fab though. I can now fit a chair in there so I can sit
in with him when he’s unwell, or his carer can have a place to sit when she’s
looking after him overnight (she previously sat in the living room with a video
monitor). There is space to bring the
wheelchair into the room, beside the bed so I can hoist (rather than lift) him
in and out – my back is very grateful for that!
The hoist has been there for a while, but unless we moved all the
furniture out of his room we couldn’t get a chair anywhere near it. Now we can fit his cupboards and a wheelchair
in! It also means he can play with his
toys or look at his bubble tube and fibre optics whilst in his bean bag, rather
than lying in his bed. It means Hugh can
actually play in his bedroom without having to go to bed to do so.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6LLJb4opid2i3qwdYWL4PqmA_picueJ_fdh1d5P_6Yqn6vhYXKdJNvchRjHCK1Wl8_RULycAEipW6f5pKbGi6nyyYmMKUVYogvGCU3m18OknEvXq9ML0g3No7FDXzGQK7rQKQCgqiDfw/s1600/HughsRoom.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="244" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6LLJb4opid2i3qwdYWL4PqmA_picueJ_fdh1d5P_6Yqn6vhYXKdJNvchRjHCK1Wl8_RULycAEipW6f5pKbGi6nyyYmMKUVYogvGCU3m18OknEvXq9ML0g3No7FDXzGQK7rQKQCgqiDfw/s320/HughsRoom.jpg" width="320" /></a></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">There’s more, much more, that I love about it
(the fact that the kitchen is a real party room, I have an island and a
dishwasher, the floors are the same throughout which makes it so much easier to
move Hugh about) but I don’t want to bore you, or to sound like I’m
bragging. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">We’ve been lucky, very lucky, to have such
amazing friends working on this with us, but it’s still cost way more than we
expected, particularly as we hit a few unexpected problems along the way. The next step is to get access into the house
(we’ve got a temporary ramp that’s thankfully saving my back at the moment) and
access into the garden for Hugh. A
wonderful friend of ours is running the London Marathon to raise money to help
make that happen and we’re hopeful we can start work on that late spring/early
summer. You can find his Just Giving page here:<a href="https://www.blogger.com/goog_299397735"> <o:p></o:p></a></span><span style="font-family: "arial" , sans-serif;"><a href="https://www.justgiving.com/crowdfunding/HappyLittleHugh">https://www.justgiving.com/crowdfunding/HappyLittleHugh</a></span></div>
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<br /></div>
<br />
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">At one point, it felt like <a href="https://www.blogger.com/"><span id="goog_299397728"></span>this building
project would never end<span id="goog_299397729"></span></a>, and whilst people kept telling me it would be worth
it, it was very hard to see beyond that eating dinner on a bottom bunk bed
stage! Now though, as we’re nearing the
finish line, I realise just how quickly all this has been achieved and I’ll be
eternally grateful to the people that went above and beyond to make that happen
for us; for Hugh. It has, and will
continue to make, an enormous difference
to all our lives. <o:p></o:p></span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I'm linking this with The Accessibility Stories via The Inclusive Home</span><br />
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Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com0tag:blogger.com,1999:blog-3268441232099307652.post-73560188259241419612017-02-17T10:28:00.001+00:002018-02-24T11:55:07.971+00:00Dear Doctor<div dir="ltr">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfNk7B7QxSSP9vyDrwjm74wkmlYuDPdS-TPLXRcI8lwMQwkwpjVGFlG1aagqogGnM3lPACgrTPnm0no_A0ukamlWS8Bs_ADhcbgOOjirz5ccW0OuPK6Gg5KSOPi8Iw3CudSzJnXgkzOho/s1600/1509970_10151881387407341_611386903_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfNk7B7QxSSP9vyDrwjm74wkmlYuDPdS-TPLXRcI8lwMQwkwpjVGFlG1aagqogGnM3lPACgrTPnm0no_A0ukamlWS8Bs_ADhcbgOOjirz5ccW0OuPK6Gg5KSOPi8Iw3CudSzJnXgkzOho/s400/1509970_10151881387407341_611386903_n.jpg" width="400" /></a></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Dear Medical Professional,</span><br />
<span style="font-family: Arial;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif;">You will ask about his medical history,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">And I will repeat the story I have told 100 times or more,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">The details fine tuned to the essentials I know you need:</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He was born full term,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He has a 7 year old brother who is fit and well,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He is allergic to penicillin. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif;">You will ask me what happened,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">And I will answer:</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He is 6 years old.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">He wasn't breathing for 7 minutes.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">I gave him mouth to mouth.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif;">I will hand over a careful typed piece of A4 paper.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">It will tell you his hospital number,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">The things he is allergic to,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">A list of medications and doses.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">You will take it and smile.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">You'll tell me I make your job easier.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif;">I will stand calm,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">And in control. </span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif;">You see my demeanour,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">my hospital bags packed and ready,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">And you say,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">You've done this before.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">I'll nod and say many times.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif;">But remember this;</span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif;">That 6 year old is my baby.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif;">That boy with the oxygen,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">And the wires,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">And the tubes,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Is my son.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif;">I watched him turn blue.</span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif;">The first time,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">The fifth time,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">The hundred and fifty fifth time...</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">It was still my baby.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif;">My answers may be more polished,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">I may appear more organised and calm.</span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif;">But he is still my baby.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Sometimes I lie my head on the bed beside him in A&E and sob huge silent tears onto the starched, white sheets.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Sometimes my hands shake so much, I hold them tight between my knees while I'm answering your questions.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Sometimes I hold my breath just to stop myself screaming, my throat burning from the effort of holding it in, a single tear escaping and betraying me. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif;">So please doctor, registrar, paramedic, nurse... don't be fooled by my tough exterior.</span><br />
<span style="font-family: Arial;"><br /></span>
<div style="text-align: center;">
<span style="font-family: Arial;">******** ******** ********</span></div>
<span style="font-family: Arial;"><br /></span>
<span style="font-family: Arial;">If you liked this post, please consider voting for me in the 'Post that made the biggest impact' category of the BAPs (Bloody Awesome Parents) Awards. Thank you. xx</span><br />
<span style="font-family: Arial;"><br /></span>
<span style="font-family: Arial;">http://www.myfamilyourneeds.co.uk/baps/biggest-impact/</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfNk7B7QxSSP9vyDrwjm74wkmlYuDPdS-TPLXRcI8lwMQwkwpjVGFlG1aagqogGnM3lPACgrTPnm0no_A0ukamlWS8Bs_ADhcbgOOjirz5ccW0OuPK6Gg5KSOPi8Iw3CudSzJnXgkzOho/s1600/1509970_10151881387407341_611386903_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> </a> </div>
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Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com0tag:blogger.com,1999:blog-3268441232099307652.post-35593546701942905182017-02-09T18:11:00.001+00:002017-07-05T00:26:42.273+01:00I'd Move Heaven And Earth To Help You<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I would move heaven and earth for you, <br />
If I could.</span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I'd walk a thousand miles for you, <br />
If it would help.</span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I'd pray to God, <br />
To any god, <br />
To every god, <br />
If I thought it would make a difference. </span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I'd go to hell and back for you.</span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I've been to hell and back with you.</span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I've begged God to save you,<br />
To help me, <br />
To stop this.</span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I've walked miles of hospital corridors, <br />
Paced the house in the early hours, <br />
Ran until I couldn't breathe.<br />
<br />
For you, </span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">With you, </span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Because of you.</span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And yet;<br />
Here we are...</span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span></div>
<div dir="ltr">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
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Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com0tag:blogger.com,1999:blog-3268441232099307652.post-85566173431991730522016-11-11T14:35:00.000+00:002017-07-05T00:29:27.556+01:00Missing Dad<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJxkNWVdwhG9CJQb7PvxLU3huCkgHAQOzTuAXjdF28dLenWSs5gtHohkoJF3ShCBWb2cAf9KzgK0x197ei_RBTMpIS6jLIeOJtak59LYKIl9wcvswUegrffc970WKMuxx4Biob5nSAuBM/s1600/seandigger.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJxkNWVdwhG9CJQb7PvxLU3huCkgHAQOzTuAXjdF28dLenWSs5gtHohkoJF3ShCBWb2cAf9KzgK0x197ei_RBTMpIS6jLIeOJtak59LYKIl9wcvswUegrffc970WKMuxx4Biob5nSAuBM/s200/seandigger.png" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just Like Grandad</td></tr>
</tbody></table>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">It's at funny times
I miss my dad; when I'm driving somewhere new and I've no one to discuss the
route with- I'm sure he knew the fastest way to get anywhere - or when I catch
an episode of Deal or No Deal and I remember how, when he was ill and I was pregnant,
we'd spend hours sat watching it and discussing what we'd do. <o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div style="text-align: right;">
</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I don't miss him all
day every day, but I think about him often. I know that if he was here, he'd be
project managing this whole Big Build. He'd have spent hour after hour here
getting the job done. My Father-in-law too. The pair of them would have been
hammering and sawing and building and fixing, putting to shame lads half their
age. <o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I miss them both.<o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The Big Build, as
exciting as it is, is a huge reminder of the important people missing in our
lives. The two men, who'd have built it single-handedly if they could, and the
two women who would have filled it with such warmth and love. <o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTBQyYX_De8S8q7KIKq_1PhHKbUPGnpUEpyrXGmGABkXn5bQF_1Y6t6V9kX5OJb8Su0DKAC7anig43-rHz5d4kNtW0ack1oe93IJhromGfvIJdruQBqP8-PwNuxh1FARNM5Dg6ZebTULc/s1600/seanroof.png" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="178" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTBQyYX_De8S8q7KIKq_1PhHKbUPGnpUEpyrXGmGABkXn5bQF_1Y6t6V9kX5OJb8Su0DKAC7anig43-rHz5d4kNtW0ack1oe93IJhromGfvIJdruQBqP8-PwNuxh1FARNM5Dg6ZebTULc/s200/seanroof.png" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Trying not to drill their fingers to the roof</td></tr>
</tbody></table>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">It should be John Joe
on the roof, teaching his grandson how to hold the saw correctly. It should be my dad with Sean on his lap in
the digger, teaching him how to drive it, as he did with me when I was 7.<o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">There are times I
look at this project, the house that it will become and how it will change all
our lives and I feel incredibly lucky, truly blessed to have such people in our
lives to help us achieve this. Yet there
are other times when I am acutely aware of the people that are missing and I
know that I would trade it all in a heartbeat to have them back.<o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">We'd have had a
fight with the two dads about the flat roof- of that I'm sure. Neither would be
impressed with that decision. And John Joe, my father in law, would be cursing
me that I've still not painted that side gate! He'd have given up nagging by
now, I guess, and done it himself. <o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">I'm not sure if I
believe in ghosts as such. Not the spooky, white sheets over your head kind
anyway. But spirits, or souls, or positive energies or whatever. I believe in
that. <o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">And whilst they may
not be physically here, giving the orders, cracking the jokes and wheeling
barrow after barrow load of screed through the house, I know they're both here,
watching over it all, tutting when I'm not bringing the tea fast enough and
rolling their eyes at each other. </span><span style="font-family: "arial" , sans-serif; font-size: 16px;">The foreman and the site manager.</span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 12pt;">I hope they're proud
of what we've achieved so far. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: 12pt;"><br /></span>
<br />
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTlNZgl1ulaAaNEfKRhYBlwTAES2f38c1N5jc_FOGNmvFqSsIekq2UNwZMeKrMhdimjFUscFGrlqho3WEZ3bDMJdxsX6a7j0yZKEYy2dyg9Mk2EK8MnLW8dMgxUlP3_q7bzUQkRSYRmH8/s1600/dadsaw.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="233" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTlNZgl1ulaAaNEfKRhYBlwTAES2f38c1N5jc_FOGNmvFqSsIekq2UNwZMeKrMhdimjFUscFGrlqho3WEZ3bDMJdxsX6a7j0yZKEYy2dyg9Mk2EK8MnLW8dMgxUlP3_q7bzUQkRSYRmH8/s320/dadsaw.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dad looking amused at my dubious sawing skills</td></tr>
</tbody></table>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<br />
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Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com0tag:blogger.com,1999:blog-3268441232099307652.post-48554150197272577202016-10-31T15:06:00.004+00:002017-07-05T00:48:56.390+01:00Just Bog Off!!!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjPG4-91CCshrnnUNaFbH4uf6rDPXC4WYA2HncN1eKmn_bxDTHXTbU6a_cTDCewQgQ8zbBqNjio6-_jC1Q6S6Uditsh5omjP_qEKHIvUajLp91gqqiXFx1PZCRu3kYuaquoDdJA2Ua4QQ/s1600/IMG_9237.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjPG4-91CCshrnnUNaFbH4uf6rDPXC4WYA2HncN1eKmn_bxDTHXTbU6a_cTDCewQgQ8zbBqNjio6-_jC1Q6S6Uditsh5omjP_qEKHIvUajLp91gqqiXFx1PZCRu3kYuaquoDdJA2Ua4QQ/s200/IMG_9237.JPG" width="200" /></a></div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">This is Hugh. </span><span style="font-family: arial, helvetica, sans-serif;">Hugh is 6. </span><span style="font-family: arial, helvetica, sans-serif;">Hugh uses a wheelchair.</span></div>
<div>
<div style="text-align: center;">
<span style="font-family: arial, helvetica, sans-serif;">Hugh likes to go out, just like other 6 year olds.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"></span></div>
</div>
<div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Hugh sometimes needs to go to the toilet when he is out, just like other 6 year olds. </span></div>
</div>
<div>
<br /><span style="font-family: "arial" , "helvetica" , sans-serif;"></span></div>
<div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAHPqZ-58OqP4Fgy38PqMYTWcol1bPZyIdrNe9ui5ac0tfjfiFs_l1ZZYJozXZLqBzqr4Mgj1czJLMubvzikeHu-ydYDBI8nV5EN419tXID1weJWysB7fRUFw2fXgcNH4QgDDS3-QuwG0/s1600/IMG_9244.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAHPqZ-58OqP4Fgy38PqMYTWcol1bPZyIdrNe9ui5ac0tfjfiFs_l1ZZYJozXZLqBzqr4Mgj1czJLMubvzikeHu-ydYDBI8nV5EN419tXID1weJWysB7fRUFw2fXgcNH4QgDDS3-QuwG0/s200/IMG_9244.JPG" width="200" /></a></div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">This is a disabled toilet. </span><span style="font-family: arial, helvetica, sans-serif;">Hugh is disabled.</span></div>
<div style="text-align: center;">
<span style="font-family: arial, helvetica, sans-serif;"><br /></span></div>
</div>
<div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span></div>
</div>
<div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi676BUwbdJWVQ0Suxf2hyphenhyphenaPCZKPpMscd7E9xnAYCKM8x2fJvVUs_qcWnnbIeycp3pPErHUK0xG9LlP6PJiGKLYUJSHliRG7694gKv7SHRwP_eu2FGUigu0AnvWz8ccxwHbf47ORzZ8nIY/s1600/IMG_9240.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi676BUwbdJWVQ0Suxf2hyphenhyphenaPCZKPpMscd7E9xnAYCKM8x2fJvVUs_qcWnnbIeycp3pPErHUK0xG9LlP6PJiGKLYUJSHliRG7694gKv7SHRwP_eu2FGUigu0AnvWz8ccxwHbf47ORzZ8nIY/s200/IMG_9240.JPG" width="115" /></a></div>
</div>
<div>
<div style="text-align: center;">
<span style="font-family: arial, helvetica, sans-serif;">Hugh has a special key that lets him use disabled toilets.</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4QjjA0YN570JxkGxUNU-NjsjV0MqvqgiWTkSVlVXvaktZEwc3tBRKnsZi7ZMJEGuXl3Akz78QV8s7SqAgUA6VNJpRBT_KGhiUnn0RQVRfOEfJbYjmmNneQUt3hWSVX9GviAHHDYHmqjo/s1600/IMG_9226.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4QjjA0YN570JxkGxUNU-NjsjV0MqvqgiWTkSVlVXvaktZEwc3tBRKnsZi7ZMJEGuXl3Akz78QV8s7SqAgUA6VNJpRBT_KGhiUnn0RQVRfOEfJbYjmmNneQUt3hWSVX9GviAHHDYHmqjo/s200/IMG_9226.JPG" width="200" /></a></div>
<div style="text-align: center;">
<span style="font-family: arial, helvetica, sans-serif;">Hugh can't use this disabled toilet though. </span><span style="font-family: arial, helvetica, sans-serif;">Hugh can't sit or stand by himself. </span></div>
</div>
<div>
<div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfpRYf7oluz_tYWRKEBrcnXnD-w_2juOtvl842nPRHeLGg_-uguND7Xiyy-1gPjVLdRqLpMiDcEHZMhHm6x5kEe8x1fwet367-hVFsdRLjEmkMDee_3cgpvE9MX6yr7uaTP_Ui_znPN2A/s1600/image1+%25281%2529.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfpRYf7oluz_tYWRKEBrcnXnD-w_2juOtvl842nPRHeLGg_-uguND7Xiyy-1gPjVLdRqLpMiDcEHZMhHm6x5kEe8x1fwet367-hVFsdRLjEmkMDee_3cgpvE9MX6yr7uaTP_Ui_znPN2A/s200/image1+%25281%2529.JPG" width="150" /></a></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Hugh wears nappies. Just like Teddy.</span></div>
</div>
<div>
<h2>
<div style="text-align: center;">
<b style="font-family: arial, helvetica, sans-serif;"><span style="color: blue;">Where would you change Hugh?</span></b><br />
<b style="font-family: arial, helvetica, sans-serif;"><span style="color: blue;"><br /></span></b></div>
<div style="text-align: center;">
<div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXTYfJLLZOmzBPHT3Hmhdmy-f3Hy4GFlWDmZUI-EeGeJynJePQybHxD-NpE9hLn4thbkKqDdlW8_JZcp_CQglB2u3OCcK_tEzHULFzRFS7V3J8K2AAdvU2vMNM42r8Eqotr8okF15Epnk/s1600/IMG_9246.JPG" imageanchor="1" style="clear: left; display: inline !important; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXTYfJLLZOmzBPHT3Hmhdmy-f3Hy4GFlWDmZUI-EeGeJynJePQybHxD-NpE9hLn4thbkKqDdlW8_JZcp_CQglB2u3OCcK_tEzHULFzRFS7V3J8K2AAdvU2vMNM42r8Eqotr8okF15Epnk/s200/IMG_9246.JPG" width="200" /></a><br />
<span style="font-weight: normal;"><span style="font-size: small;"><span style="font-family: arial, helvetica, sans-serif;">On the floor? </span><span style="font-family: arial, helvetica, sans-serif;">Just like Teddy? </span></span></span></div>
</div>
</h2>
</div>
<div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9ervZKMdVp-yNCAwNPYqxjUJfoFMZwk16IeYE4wI8iaj84RHnSwh041wDre1SpnOmkEneE8Bp__HCEzcDYNAmPvEcivpx16iOhv0HiQYmxWuQI17zFZoB7o1umDW61hJJuO6pVhkD2DY/s1600/IMG_9245.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9ervZKMdVp-yNCAwNPYqxjUJfoFMZwk16IeYE4wI8iaj84RHnSwh041wDre1SpnOmkEneE8Bp__HCEzcDYNAmPvEcivpx16iOhv0HiQYmxWuQI17zFZoB7o1umDW61hJJuO6pVhkD2DY/s200/IMG_9245.JPG" width="200" /></a></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span></div>
<div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Hugh looks at Teddy on the floor.</span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
</div>
<div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilD75QI3dSLN0djn6AlVdjBtDpqpFd45I3J0uebMMyQX6IDzNUMiwqwZQzAiACqa0HTj_qXItmedhbzr2qOmdo0zAuP_jRqFcV6SexgXxFNtPM2ON1XEWursl52v7ElZUpd97zZoR5H9U/s1600/IMG_9227.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilD75QI3dSLN0djn6AlVdjBtDpqpFd45I3J0uebMMyQX6IDzNUMiwqwZQzAiACqa0HTj_qXItmedhbzr2qOmdo0zAuP_jRqFcV6SexgXxFNtPM2ON1XEWursl52v7ElZUpd97zZoR5H9U/s200/IMG_9227.JPG" width="200" /></a></div>
<h3 style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">"Bog off Mum," <span style="font-weight: normal;">thinks Hugh.</span> "I'm not lying on a toilet floor!!!"</span></h3>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span></div>
<div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span></div>
<div>
<h2 style="text-align: center;">
<b style="font-family: arial, helvetica, sans-serif;"><span style="color: blue;">Where would you change Hugh?</span></b></h2>
<h2>
<span style="color: blue;"><div style="text-align: left;">
</div>
</span></h2>
</div>
<div>
<div style="text-align: center;">
<br /></div>
</div>
<div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfZyz65IlVOeXWKC7CGiFbT-jQA-kKKVQc9dX3inEz9PJCMJs1Gu7nM_DKErKpvrNMrv4SWCZhx9v1DozH0gH6hk9A-AkV21qynJSWWEIqNnyI9oezacriaPnQhdVA6Wpz2IK-eYmOasA/s1600/IMG_9243.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfZyz65IlVOeXWKC7CGiFbT-jQA-kKKVQc9dX3inEz9PJCMJs1Gu7nM_DKErKpvrNMrv4SWCZhx9v1DozH0gH6hk9A-AkV21qynJSWWEIqNnyI9oezacriaPnQhdVA6Wpz2IK-eYmOasA/s200/IMG_9243.JPG" width="150" /></a></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">This is a baby changing facility.</span></div>
<div style="text-align: center;">
<span style="font-family: arial, helvetica, sans-serif;">Hugh is NOT a baby. </span><span style="font-family: arial, helvetica, sans-serif;">Hugh is 6!</span></div>
</div>
<div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span></div>
<div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtfL8tQqKe7Or-LNKhfVshEXC4E7MtkMBwb-i0gsBARuF04ms8dwp7-6G5CLq1M5gwVEUxqyeul9SV6ub-YHVbPC-Osg9CAsX0NMZ4dK4gI7IkSk3dLbPpFiAh9_96GGfzdccRuai3BWA/s1600/IMG_9239.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtfL8tQqKe7Or-LNKhfVshEXC4E7MtkMBwb-i0gsBARuF04ms8dwp7-6G5CLq1M5gwVEUxqyeul9SV6ub-YHVbPC-Osg9CAsX0NMZ4dK4gI7IkSk3dLbPpFiAh9_96GGfzdccRuai3BWA/s200/IMG_9239.JPG" width="200" /></a></div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Teddy can fit on the changing table. </span></div>
<div style="text-align: center;">
<span style="font-family: arial, helvetica, sans-serif;">Hugh can't, because Hugh is not a baby. </span></div>
</div>
<div>
</div>
<div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJx7c7VBAI4kbjzFP9RaZwUvp0g-5Xu2IGwZiugxV-j1H-aSifa6FepL396f59d2PQ6CpFY0_BK9uGRiSI-Q3WI05l9Vbo59IoV6jLcGP9rdCSLkegDoc-3wJwY7qVxd6P7n18C1iKtWU/s1600/IMG_9238.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJx7c7VBAI4kbjzFP9RaZwUvp0g-5Xu2IGwZiugxV-j1H-aSifa6FepL396f59d2PQ6CpFY0_BK9uGRiSI-Q3WI05l9Vbo59IoV6jLcGP9rdCSLkegDoc-3wJwY7qVxd6P7n18C1iKtWU/s200/IMG_9238.JPG" width="200" /></a></div>
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<div style="text-align: center;">
<span style="font-family: arial, helvetica, sans-serif;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: arial, helvetica, sans-serif;">Hugh looks at Teddy on the changing table.</span></div>
<br />
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
</div>
<div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><b>"Bog off, Mum", </b>thinks Hugh<b> "I can't fit on that baby changing table!"</b></span></div>
</div>
<div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span></div>
<div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<h2 style="text-align: center;">
<b style="font-family: arial, helvetica, sans-serif;"><span style="color: blue;">Where would you change Hugh?</span></b></h2>
<h2 style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjjEVTR_fijpY92XhhjutS64dDOkbynxqy1CK-uEAyWd2P_bvrnUBLGgT6H8g9GjqE-vyHTV_PGUr8h-zAiz2VeqcMwS_TgETETApjmHgS9pU91774zvp30JeeneTutZPaWwpf8UEM5YU/s1600/IMG_9225.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjjEVTR_fijpY92XhhjutS64dDOkbynxqy1CK-uEAyWd2P_bvrnUBLGgT6H8g9GjqE-vyHTV_PGUr8h-zAiz2VeqcMwS_TgETETApjmHgS9pU91774zvp30JeeneTutZPaWwpf8UEM5YU/s200/IMG_9225.JPG" width="200" /></a></h2>
</div>
<div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">In the boot of the car? Teddy doesn't mind!</span></div>
</div>
<div>
<div style="text-align: center;">
<span style="font-family: arial, helvetica, sans-serif;">Hugh does.</span></div>
</div>
<div>
<h3 style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-weight: normal;">Hugh thinks,</span> "Bog off, Mum! I'm not lying in the boot of the car!"</span></h3>
</div>
<div>
<h2 style="text-align: center;">
<b style="font-family: arial, helvetica, sans-serif;"><span style="color: blue;">Where would you change Hugh?</span></b></h2>
</div>
<div>
<br /><span style="font-family: "arial" , "helvetica" , sans-serif;"></span></div>
<div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6F6LA86ohU4-Q0pemxVYWVccWGrL8_XnV8TduJlt6jNgCk8p5L1gnpeoyaAAh2cZ2qS-0_ID65wBpX7VZoqUjXnhSlATkw2lSPJZ-Ud9cMp7w7fA_v-1_Mo6SlizN4Pwr2pyBxuJtSnk/s1600/IMG_9210.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6F6LA86ohU4-Q0pemxVYWVccWGrL8_XnV8TduJlt6jNgCk8p5L1gnpeoyaAAh2cZ2qS-0_ID65wBpX7VZoqUjXnhSlATkw2lSPJZ-Ud9cMp7w7fA_v-1_Mo6SlizN4Pwr2pyBxuJtSnk/s200/IMG_9210.JPG" width="150" /></a></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">"How about here, Mum?" Thinks Hugh.</span></div>
</div>
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<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br /></div>
</div>
<div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">This is a <a href="http://www.changing-places.org/" target="_blank"><b>Changing Places</b> </a>Facility.</span></div>
</div>
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<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br /></div>
</div>
<div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">It has a hoist to help Mum lift Hugh. He's 6 now and 6 year olds can be quite heavy.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"></span></div>
</div>
<div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">It has a height adjustable bench to lie Hugh on. This helps Mum's back.</span></div>
</div>
<div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN0vCx3O5hpBOnRYm1yNTXu5Zmo4XJXKxP6KFoGPlizdS8hXTIFDMPhkcYrQ2fO6kwxp1C1f9Dpmu3lTKrk5tl3brQu6HfFWc23diB1Lf9Ro0FtUaHY-yL0JyCVbniU_AThmUJdV-xZRM/s1600/IMG_9241.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN0vCx3O5hpBOnRYm1yNTXu5Zmo4XJXKxP6KFoGPlizdS8hXTIFDMPhkcYrQ2fO6kwxp1C1f9Dpmu3lTKrk5tl3brQu6HfFWc23diB1Lf9Ro0FtUaHY-yL0JyCVbniU_AThmUJdV-xZRM/s200/IMG_9241.JPG" width="200" /></a></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">The changing table is big enough for Teddy.</span></div>
</div>
<div>
<div style="text-align: center;">
<br /><span style="font-family: "arial" , "helvetica" , sans-serif;"></span></div>
</div>
<div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">And it's big enough for Hugh. </span></div>
</div>
<div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br /></div>
</div>
<div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAoHiLpSqqlaOM_CxlCzXDa4waFreNVkvrn3DaRSZ3k4DJV77vmzUyBwkDfLGOYwiml45vS8wQkSeexVFAxuQXiI9AxYGR879nHq7K-hHx012GDjyWWgogPRMD0AqqxaarkP-rzq-zxtU/s1600/IMG_9242.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAoHiLpSqqlaOM_CxlCzXDa4waFreNVkvrn3DaRSZ3k4DJV77vmzUyBwkDfLGOYwiml45vS8wQkSeexVFAxuQXiI9AxYGR879nHq7K-hHx012GDjyWWgogPRMD0AqqxaarkP-rzq-zxtU/s320/IMG_9242.JPG" width="320" /></a></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif;">Over 1/4 of a million people would benefit from a Changing Places Facility. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Sadly there are less than 900 of them in the U.K. </span></div>
<div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">For many people an ordinary disabled toilet is not enough. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<br />
<h4>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://www.change.org/p/end-degrading-disabled-toilet-facilities-now?recruiter=39763582&utm_source=share_petition&utm_medium=facebook&utm_campaign=share_facebook_responsive&utm_term=mob-xs-share_petition-no_msg&fb_ref=Default" target="_blank">Sign the petition here to get that changed!</a></span></h4>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br /></div>
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Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com12tag:blogger.com,1999:blog-3268441232099307652.post-9028198379904916222016-10-20T21:55:00.000+01:002016-10-20T21:55:01.428+01:00The Big Build - Disaster Strikes
<br />
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt; text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-language: EN-GB;">Morrisons café
appears to be my go-to place when I'm on the verge of a nervous breakdown, I
think. Having come close to bursting into tears again after discovering not
only woodworm but damp in the house I figured it was best to get away and find
some perspective. Ordinarily I wouldn't leave the house with Hugh the day after
being discharged from hospital but the sound of the circular saw screeching as
it ripped through the floorboards in my bedroom was upsetting him too much, as
well as setting my teeth on edge, so we left in a hurry. <span style="border: 1pt windowtext; mso-border-alt: none windowtext 0cm; padding: 0cm;">As it is, he is sat opposite me snoozing contentedly while his
pump feeds him a milky lunch and I munch on a cheese and onion toastie.</span> <o:p></o:p></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-language: EN-GB;"><o:p> </o:p></span></div>
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt; text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-language: EN-GB;">The platitudes that
I usually console myself with "it'll all be worth it in the end" and
"at least we found it now and not when the job was finished" aren't
having the desired effect and I had to strongly suppress the urge to scream. In
truth, I'm feeling a little hard done by. This never happens on DIY SOS. <o:p></o:p></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-language: EN-GB;"><o:p> </o:p></span></div>
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt; text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-language: EN-GB;">So, in an effort to
redress the balance and stop myself sulking like a child, I'm working on some
reasons to be cheerful and I'll return home with renewed positivity. <o:p></o:p></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-language: EN-GB;"><o:p> </o:p></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt 36pt; mso-list: l0 level1 lfo1; text-align: justify; text-indent: -18pt;">
<!--[if !supportLists]--><span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-font-family: Arial; mso-fareast-language: EN-GB;"><span style="mso-list: Ignore;">1.<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-language: EN-GB;">Our carpenter. Most of the people helping on this
<a href="http://www.littlemamamurphy.co.uk/2016/07/the-big-build-birmingham-style.html" target="_blank">Big Build</a> are friends we've known for years. Stephen grew up with most of them.
Some of these friendships have lasted 40 years (yes he really is THAT old!).
What they're doing is amazing but they're fuelled by a lifetime of friendship.
Not so for Neil- he only entered our lives after the reception teacher
encouraged our sons to be friends 3 years ago. Despite knowing us such a
relatively short time, he has worked tirelessly to get our house back to a more
inhabitable condition. He's there now, while I'm sulking in Morrisons. He's
there more than I am, I reckon. And whilst he might take the piss out of me for
not making enough cups of tea and he can be quite annoying after a few beers,
we really couldn't have done this without him. <o:p></o:p></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt 36pt; text-align: justify;">
<span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-language: EN-GB;"><o:p> </o:p></span></div>
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt 36pt; mso-list: l0 level1 lfo1; text-align: justify; text-indent: -18pt;">
<!--[if !supportLists]--><span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-font-family: Arial; mso-fareast-language: EN-GB;"><span style="mso-list: Ignore;">2.<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-language: EN-GB;">Hugh's home from hospital and pretty healthy
considering. Sometimes when Hugh's had a bad run of seizures he can be groggy
and off colour for days. Instead he's full of beans and really happy. It means
I can leave the house with him quite easily. <span style="border: 1pt windowtext; mso-border-alt: none windowtext 0cm; padding: 0cm;">And when we need to evacuate
the house for a few hours while woodworm treatment commences tomorrow, this
won't be an issue as he's ready to go back to school anyway.</span> <o:p></o:p></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1UJxLMtyMAKH25EcQe0i7lL4_q1Y3aG8tGgvyT1TD_jahGsOZVPen4DByAJxWeEkWsKGTnIrwTS6U8OwJlcWu1G7AkUUv8sQXCeTuobQIYLy0SaOG8t06WkxsrQqfVQiCYweKCqKhuE8/s1600/Hugh+Home+from+Hosp.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1UJxLMtyMAKH25EcQe0i7lL4_q1Y3aG8tGgvyT1TD_jahGsOZVPen4DByAJxWeEkWsKGTnIrwTS6U8OwJlcWu1G7AkUUv8sQXCeTuobQIYLy0SaOG8t06WkxsrQqfVQiCYweKCqKhuE8/s200/Hugh+Home+from+Hosp.png" width="198" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy to be home from hospital</td></tr>
</tbody></table>
<span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%; mso-fareast-language: EN-GB;"><o:p> </o:p></span><br />
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt 36pt; mso-list: l0 level1 lfo1; text-align: justify; text-indent: -18pt;">
<!--[if !supportLists]--><span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-font-family: Arial; mso-fareast-language: EN-GB;"><span style="mso-list: Ignore;">3.<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-language: EN-GB;">So far (I really shouldn't jinx it like this) but
Sean's and Hugh's bedrooms have remained unaffected. Hugh's bedroom is his
sanctuary. His favourite place in the world is his bed. It's because of this
we've resisted moving out to my mum’s while the building work is carried out.<span style="border: 1pt windowtext; mso-border-alt: none windowtext 0cm; padding: 0cm;"><span style="mso-spacerun: yes;"> </span>(Well that and the fact it
would be a nightmare to get the kids to school in the morning from her house).</span> He
can still chill out and listen to his music and watch his bubble tube and his
flashing disco lights. Having this space keeps him calm, keeps him happy. And
I'm grateful for that.<o:p></o:p></span></div>
<br />
<div class="MsoListParagraph" style="margin: 0cm 0cm 8pt 36pt;">
<span style="font-family: "Arial",sans-serif; font-size: 12pt; line-height: 107%; mso-fareast-language: EN-GB;"><o:p> </o:p></span></div>
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt 36pt; mso-list: l0 level1 lfo1; text-align: justify; text-indent: -18pt;">
<!--[if !supportLists]--><span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-font-family: Arial; mso-fareast-language: EN-GB;"><span style="mso-list: Ignore;">4.<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-language: EN-GB;">Sean's room has bunk beds and the bottom can either
be a double bed or a settee. Lately it's been serving as our living room/dining
room. We eat our dinner in there, Sean does his homework in there and we play
cards in the evening in there. Yes, cards!!! We have no TV at the moment as the
aerial is disconnected. It's a bit like living in the olden days! It's been
quite fun actually and Sean has loved learning new card games. Tonight, with no
floorboards in our bedroom, we can pull it out into a double bed and we'll
still have somewhere to sleep. That's something to be thankful for. <o:p></o:p></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEmlWQU3DteVWPGN_K4V76bwVbKtqpV-TyRlRjjrMaXqqLz8YAxsD30eYL5JQha7ZFWPHeBFWr3YmS3a9aCvC11N11dgy6vx2TTWW4gNIwDfGwE8_wUvHHcQBPmeUyc2eKtsF37graRAQ/s1600/bunkbed+dinner.png" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEmlWQU3DteVWPGN_K4V76bwVbKtqpV-TyRlRjjrMaXqqLz8YAxsD30eYL5JQha7ZFWPHeBFWr3YmS3a9aCvC11N11dgy6vx2TTWW4gNIwDfGwE8_wUvHHcQBPmeUyc2eKtsF37graRAQ/s200/bunkbed+dinner.png" width="184" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Does this count as 'sitting down to eat together as a family'?</td></tr>
</tbody></table>
<br />
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt 36pt; mso-list: l0 level1 lfo1; text-align: justify; text-indent: -18pt;">
<!--[if !supportLists]--><span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-font-family: Arial; mso-fareast-language: EN-GB;"><span style="mso-list: Ignore;">5.<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-language: EN-GB;">There's a curry in the slow cooker and wine in the
fridge. Thursday evening sorted. <o:p></o:p></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-language: EN-GB;"><o:p> </o:p></span></div>
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-language: EN-GB;">So, positive mental attitude resurrected, I'm able
to face the mess and the chaos that awaits. </span></div>
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-language: EN-GB;"></span> </div>
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-language: EN-GB;">I</span><span style="font-family: "Arial",sans-serif; font-size: 12pt; mso-fareast-language: EN-GB;"> think. <o:p></o:p></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Arial",sans-serif; font-size: 12pt;"><o:p> </o:p></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq5nBCcVFzPp0CTPft9cyXRYUNMLKKGMkOcZDaPY7-ShClDoVl7LASGZ7ePs4kw87IOqAXoJ1695EEmkya-v1NmuVnihDk8xu4hywYnUeYlCfRVdio1mElE5YnhGVJXT2EAa3MHzCvptk/s1600/no+floorboards.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="241" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq5nBCcVFzPp0CTPft9cyXRYUNMLKKGMkOcZDaPY7-ShClDoVl7LASGZ7ePs4kw87IOqAXoJ1695EEmkya-v1NmuVnihDk8xu4hywYnUeYlCfRVdio1mElE5YnhGVJXT2EAa3MHzCvptk/s320/no+floorboards.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Or maybe not ... *goes off to cry*</td></tr>
</tbody></table>
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<span style="font-family: "Arial",sans-serif; font-size: 12pt;"><o:p></o:p></span> </div>
Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com3tag:blogger.com,1999:blog-3268441232099307652.post-51155423777780473242016-10-17T23:42:00.001+01:002017-05-26T23:58:59.887+01:00Seizure Watch<div dir="ltr">
<u>If</u> Seizure Watch in our house was graded like a terrorist threat level then we've been upgraded from substantial to critical- meaning an attack is highly likely and imminent. Hugh's had two severe seizures needing resuscitation since he woke this morning. That's twice today he's stopped breathing completely, twice today he's gone blue, twice we've had to breathe for him and pump him full of drugs until the seizure stopped and he took a breath for himself. I'm expecting another before morning. In fact I'm sat here waiting for it. Literally. I'm sat by his bed, watching and waiting. The midazolam is out, the phone is charged and ready to call 999, the bag and mask is by his head, connected to the oxygen, he's hooked up to the sats monitor. The second he stops breathing, I'm ready to pounce. I'll probably doze in the chair next to his bed if I can so I'm wearing clothes comfortable enough to sleep in but nothing obviously pyjama-y in case I'm whisked off in the ambulance at 2am. The hospital bag is packed and waiting at the front door. Contingency plans for getting his brother Sean to school in the morning have been put in place. Yes, we're on high alert; the threat level is critical. </div>
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<div dir="ltr">
<br /></div>
<div dir="ltr">
And how is Hugh behaving in all of this? You might imagine he looks poorly or is sleepy or has a temperature or something. But no, right now he is rolling around his bed laughing. For all intents and purposes he looks fine. And he is fine. Until suddenly, he's not. </div>
<div dir="ltr">
And that's the difficult thing with his seizures- there's no rhyme or reason or warning to them. This morning he woke happy and delighted in lying there punching daddy in the face (I too found this quite amusing). </div>
<div dir="ltr">
And then he stopped breathing. <br />
Just like that. </div>
<div dir="ltr">
Perfectly happy one second to dying in front of our eyes the next. And yes I realise that sounds a bit melodramatic but it's true. He stops breathing. Completely. He won't start again unless the seizure stops. The seizure won't stop by itself. Each time this happens Hugh is completely reliant on us to breathe for him, to get drugs into him to stop the seizure; to save his life.</div>
<div dir="ltr">
And after? He sleeps. A combination of the powerful drugs and the after effects of the seizure knock him out. His breathing becomes shallow and laboured and he is deathly pale. He remains limp and incredibly still. Almost lifeless. Almost.</div>
<div dir="ltr">
Today we drove home with him in that state. Debating whether country roads or a busy m6 motorway would be easier for an ambulance to get to us should we need it. I watched him like a hawk the whole way, barely daring to breathe myself. At least once home I know an ambulance can get to us quickly, I know the local hospital staff know him well. </div>
<div dir="ltr">
And when he wakes, it's like it never happened. His pupils might be a bit larger than normal and his limbs a bit floppier- the after effects of his heavy drug use- but otherwise he's fine. </div>
<div dir="ltr">
Reassuringly fine. </div>
<div dir="ltr">
Absolutely fine. </div>
<div dir="ltr">
Until he's not. </div>
<div dir="ltr">
Edited to add: Shortly after finishing this post the seizure we were expecting arrived. We resuscitated him again and called the ambulance. We're currently sat in A&E waiting to be admitted while Hugh recovers from this latest episode. </div>
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Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.comtag:blogger.com,1999:blog-3268441232099307652.post-11758676840223291002016-10-11T22:34:00.001+01:002017-05-24T14:27:11.385+01:00The Big Build for Hugh - The Half Way Point<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Considering that the
building work has been going on since July, I think it's quite impressive that
yesterday was the first day that it all just felt a bit too much and I had to
resist the urge to cry. Without heating or hot water, with nowhere to sit and
the air still pretty dusty, I gave up and decided to sit in Morrisons where I
could have a cup of tea in the warmth before I summoned up the energy to face
the mess. You'll be pleased to know I didn't burst into tears and now with the
heating and water back on, the house (relatively) clean and sat in bed with a
glass of wine (there really is nowhere else to sit) it doesn't seem so bad
after all. So I thought I'd take the time to update you on how the
#BigBuild4Hugh has gone so far. <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnXTvnbFOCFNuo9MpZobci-WDo_K-3BstihRTr7_uLzUwaCY-KC7u4vCJq_iFZYIpCcwsoEYPJTpTwaIkCfU9AAvXRmBBP5hRyusY30yaICaXLd7-YvnNXzuGKk205avr4bh3Ilf9gJ60/s1600/Missing+wall.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnXTvnbFOCFNuo9MpZobci-WDo_K-3BstihRTr7_uLzUwaCY-KC7u4vCJq_iFZYIpCcwsoEYPJTpTwaIkCfU9AAvXRmBBP5hRyusY30yaICaXLd7-YvnNXzuGKk205avr4bh3Ilf9gJ60/s320/Missing+wall.png" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I'm sure there was a wall here last week</td></tr>
</tbody></table>
<o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Our friends have
continued to amaze me, turning up weekend after weekend and/or evening after
evening to help out. I'm fairly certain some of them are spending more time at
my house than their own. The actual structure of the house went up in less than
the 9 days that I joked about (I suggested that since Nick Knowles and the DIY
SOS team could do it in 9 days then there was no reason these guys couldn't).
It wasn't consecutive days, but counting full days worked, I think it was up in
about 7 days- from digging footings to laying the last bricks. Pretty
impressive. Although it left just 2 days for the rest of the work of my 9-day
target was to be met.<o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The roof was next.
From where I stood (at the kettle making tea mostly/or on the settee drinking
it perhaps) it looked like a rather soul destroying job: a lot of hard work and
pain staking effort went into that roof. It's up, it has two of the four roof
lanterns in and it is watertight. (Bar the big holes for the roof lanterns of
course). The windows are in, the external doors are nearly in and the
scaffolding is down. <o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">It's all looking
pretty exciting<o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Last weekend was all
about knocking down the walls and this was the bit I was dreading from the
start. The existing kitchen was knocked down along with most of one side of the
house. I hid away for that bit- we spent the day with my cousin and the night
at my mums. I figured the dust would be no good for Hugh's chest or my asthma.
They've cleverly boarded up the section of the house we're living in so that
we're not really exposed to the dust on the building site side of the house.
There was some, of course, but it hasn't taken me too long to clear it up. <o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">We're currently
living in our bedrooms, with the bathroom and a tiny makeshift kitchen with a
sink, a fridge, a microwave and a washing machine. This was more than I
expected to be honest- I'm pretty chuffed to still have access to my washing
machine. I've no cooker though so I'm having to make meals using a slow cooker
and an electric steamer, which isn't too difficult but means I have to be
organised. There's been the odd takeaway or 10 of course too. Storage is an
issue and it's a bit like a game of Tetris trying to find space for everything.
Hugh's many chairs being the biggest obstacles to work around. To take a shower
you need to move one of them into the hall, which invariably means moving two
others into bedrooms. Honestly... the boy has a LOT of chairs. We eat our
dinner on the bottom bunk of Sean's bed and can watch TV there but once he's in
bed at 730 there's nowhere else to sit. Friends popped over at the weekend and
with the lack of seating and the lack of heating, we ended up having to light a
fire in the garden and sit around that instead! <o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1Epx-SDgzoj50NoZvJId79Xs_T9qMl_Ry1T90jIULIzF1pr9BPoKxCswVp48BIT3DNkMR6zk3cRuNAvS1MGzAAZbCZ8jF8WN2mURHwpDkbJfBWJPbO41NrSEhnVmMgiaG1hWzJjSmcu8/s1600/theleak.png" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1Epx-SDgzoj50NoZvJId79Xs_T9qMl_Ry1T90jIULIzF1pr9BPoKxCswVp48BIT3DNkMR6zk3cRuNAvS1MGzAAZbCZ8jF8WN2mURHwpDkbJfBWJPbO41NrSEhnVmMgiaG1hWzJjSmcu8/s320/theleak.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Leaking pipes can make attractive water features ...</td></tr>
</tbody></table>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">There's been a few
low points- the rain coming into the kitchen at 2am, discovering a burst water
pipe, the heating packing up. But actually we've been pretty lucky. It would
have been much worse to find the water leak when the job was finished. And any
time it feels a bit too cold or a bit too messy or a bit too cluttered, I remind
myself that it will all be worth it in the end. And it really, really will. <o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">The things I can't
wait for…<o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">*Having somewhere to
store <i><u>all</u></i> of Hugh's chairs, <o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">*Being able to wheel
him up a ramp rather than dragging him up the front step, <o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">*Having storage for
all of his feeding equipment, <o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">*Having a fancy new
kitchen (not really for Hugh that bit is it?), <o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">*Having access into
the garden for Hugh, <o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">*Having enough space
in the kitchen that me and the two boys can all be in there at the same time,<o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">*Throwing a massive
party to celebrate its completion!!!<o:p></o:p></span></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<br />
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Speaking of which, to
celebrate the half-way-ish stage and to say a big thank you to everyone that
has worked so hard on the build, we decided to throw a bit of a party. Through
amazing good fortune, this coincided with a marketing campaign Magners were running
locally where they turn up at parties with a load of cider. A few tweets later
and the van arrived. Not only they did bring enough cider to keep a lot
of builders very happy but they brought an Xbox with FIFA and set that up in
the garden along with a photo booth, a football table and a table for playing
'beer pong' as well. To borrow a saying from another well-known alcoholic
beverage 'if Magners did parties...' It really was brilliant, there was a great
atmosphere and it was such a funny day- the highlights being the dizzy
penalties and watching the kids playing beer pong - with cherryade!! The
completion party has a lot to live up to!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv9aU9RbGUuJY7FRIFf6aZdyAAszTkWGW8g70h8nD-BB2XqWbeHZXFOWIFnv_nLaAkrIX4-Wan10xdDfB6siDFJRwDjasmk4_FVxs7ZUTkMlp5qOJiGfHyTeOMioOKGZWD1pQ4WnU5MDo/s1600/partycollage.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="158" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv9aU9RbGUuJY7FRIFf6aZdyAAszTkWGW8g70h8nD-BB2XqWbeHZXFOWIFnv_nLaAkrIX4-Wan10xdDfB6siDFJRwDjasmk4_FVxs7ZUTkMlp5qOJiGfHyTeOMioOKGZWD1pQ4WnU5MDo/s640/partycollage.png" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">L-R: The family looking silly, Just some of the people responsible for <strike>the mess </strike>the fabulous extension, With Henry & Chris (the party men from Magners) and the very last case of cider!</td></tr>
</tbody></table>
<o:p></o:p></span></div>
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Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.comtag:blogger.com,1999:blog-3268441232099307652.post-31781375613464712792016-10-06T17:24:00.001+01:002017-07-05T00:27:53.807+01:00An update - Four weeks after VNS Surgery<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcySZ8Lbj2s5cMVN9WaUFWz7VmTMDhLtyGBEMZWLWG3BxVn97bCaUk0rHrGC2m5auFanLpgQBQkoLJg1RsM3RUg-yXmewDAESWlaPzbfXpoVtQrNwrcXeEtH5fz_deaUKM3-SEGC3pQeo/s1600/aftersurgery.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcySZ8Lbj2s5cMVN9WaUFWz7VmTMDhLtyGBEMZWLWG3BxVn97bCaUk0rHrGC2m5auFanLpgQBQkoLJg1RsM3RUg-yXmewDAESWlaPzbfXpoVtQrNwrcXeEtH5fz_deaUKM3-SEGC3pQeo/s200/aftersurgery.png" width="153" /></a></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">When Hugh finally woke after his VNS surgery he
was irritable. Although non-verbal, he was able to make it pretty clear that he
didn't want to be there anymore and was very unhappy whenever the nurses came
near him- even if this was just to check his temperature. This is quite a big
step for Hugh, he usually doesn't react until they've actually started doing
something to hurt him, like cannulate him for example. He's starting to
recognise now though that potentially these people in blue are coming to do something
to him that he won't like. It's a positive step in terms of development, in
recognising people and situations and in understanding cause and effect. It's
also a sad reflection of the amount of times he spent in hospital too though.<o:p></o:p></span></div>
<div class="MsoNoSpacing" style="min-height: 20.3px;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">Once
home, Hugh was a lot happier and barely needed any pain relief. I was shocked
at the size of the dressings and even more shocked when I saw what was
underneath them. I'm squeamish anyway - after his gastrostomy I was given a
sharp telling off by the nurse that if I wouldn't look at it then I couldn't
clean it and therefore wouldn’t be allowed to take him home- so perhaps I'm not
the best judge, but the incisions seemed so much bigger than I'd expected. His
chest was bruised and the device was a clearly visible lump under the skin, the
incision on his neck made it look like I'd tried to decapitate him. I was
probably naive, and as I said I'm particularly squeamish anyway, but he just
looked a lot more butchered than I'd expected him too. That said, the chest
incision is healing into a really neat line and the lump under the skin (I was
probably being ridiculous to have expected it to be invisible, given the size
of the device and Hugh's tiny frame) doesn't turn my stomach any more. His neck
is still quite red and inflamed looking some 4 weeks on and the dissolvable
stitches still haven't dissolved at each end. The redness isn't helped by
Hugh's insistence on scratching at it every time I get him dressed or
undressed, so I'm covering it in Savlon every day desperately hoping it won't
get infected. <o:p></o:p></span></div>
<div class="MsoNoSpacing" style="min-height: 20.3px;">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYSS-wjG2WylC_ma2CEdxFjIChNvoCck4lRz7kmXc7x2WIoW6pTxZ1cXzTfT1Mn9ixtCyZ1cN58Ud9hyphenhyphenBC_i1UBsbngiJdLIVMfOWykDomX9oIP7H6P-l1KJU2gZWVZBXYYKudRf63mnI/s1600/vnswand.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYSS-wjG2WylC_ma2CEdxFjIChNvoCck4lRz7kmXc7x2WIoW6pTxZ1cXzTfT1Mn9ixtCyZ1cN58Ud9hyphenhyphenBC_i1UBsbngiJdLIVMfOWykDomX9oIP7H6P-l1KJU2gZWVZBXYYKudRf63mnI/s1600/vnswand.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Programming the VNS <span style="font-size: xx-small;"><a href="http://eu.cyberonics.com/en/vns-therapy/healthcare-professionals/programming-patient-components" target="_blank">image credit</a></span></td></tr>
</tbody></table>
<div class="MsoNoSpacing">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"></span></div>
<div style="text-align: justify;">
<span style="font-size: 12pt;">Two
weeks after surgery, we returned to hospital to have the VNS</span><span style="font-size: 12pt;"> turned on. I was
amazed how this was done. They simply hold a large wand against his chest and
programme it through an attached portable tablet. We were warned he might cough
when it was switched on, but other than his breathing momentarily sounding a
bit like Darth Vader there was no other sign that anything had happened. The
device was set to fire 30 seconds of current (set at 0.25) up the vagus nerve
to his brain every five minutes. We were also given a strong magnet to swipe
over his chest to send a stronger burst of electrical current should a seizure
break through. It was all very interesting and exciting. We were booked in to
come back again in a fortnight to have the device turned up and told not to
expect to see any changes for a good few weeks yet.</span></div>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFFqFUZ4t_S6jjmgKewg0_SwFkeijArhs5aMx6xsc76sQKN1XOmjSpnI38wzBcbkzk7miC5P8dNJNku09IzO_p7p_kydGcQ9GvzmuydtKI0k9_hJlLfSkoRxazrXajgL_Okis49EKAnxE/s1600/magnetvns.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="127" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFFqFUZ4t_S6jjmgKewg0_SwFkeijArhs5aMx6xsc76sQKN1XOmjSpnI38wzBcbkzk7miC5P8dNJNku09IzO_p7p_kydGcQ9GvzmuydtKI0k9_hJlLfSkoRxazrXajgL_Okis49EKAnxE/s200/magnetvns.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Magnet <span style="font-size: xx-small;"><a href="http://eu.cyberonics.com/en/vns-therapy/healthcare-professionals/programming-patient-components" target="_blank">image credit</a></span></td></tr>
</tbody></table>
<div class="MsoNoSpacing" style="min-height: 20.3px;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;">That
first afternoon and evening I was quite anxious. Hugh was unusually still and
quiet. For a child that moves his arms and legs almost constantly this was
really strange. That night his heart rate was much higher than normal and his
sleep was unsettled and disturbed. This pattern continued for much of the first
week though the unsettled nights could well have been caused by adjusting to
the first week back at school. His heart rate has since returned to
normal. <o:p></o:p></span></div>
<div class="MsoNoSpacing" style="min-height: 20.3px;">
<br /></div>
<br />
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<div style="text-align: justify;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt;">Although
we are not expected to notice any changes to Hugh's seizures until the device
is set at 1.0 (we're currently at 0.5 due to increase to 0.75 next week and up
to 1 two weeks after) we've already noticed some significant changes. Initially
there was an increase in the frequency of seizures although the duration
dropped from his usual 10-20 minutes to between 2-5 minutes. Furthermore, the
seizures presented differently with less movement and jerking of his arms and
legs. This is a positive step and leaves
me hopeful that in time and with further increases we may manage better overall
seizure control. Here’s hoping anyway.</span></div>
<span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br />
<o:p></o:p></span>
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Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com0tag:blogger.com,1999:blog-3268441232099307652.post-64769180290511518622016-09-13T22:28:00.001+01:002016-09-14T21:54:24.528+01:00VNS - The Surgery<div style="background-color: white; color: #454545; line-height: 21.3px;">
</div>
<div style="text-align: justify;">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEga_LM8lf3hw2EB5eh5QiYrIIngTBqYno-kNK2mO9n4OvUJHTznzNE0EMkCfuqAK8o0A3ncIPeSWFpfQOLpeoHovnd4WRXlEk6qFw4Bqo-LAhvQleY3zOeI37TLOUIfgxRdFHRdXzkIP-g/s1600/waitingforsurgeryVNS.png" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEga_LM8lf3hw2EB5eh5QiYrIIngTBqYno-kNK2mO9n4OvUJHTznzNE0EMkCfuqAK8o0A3ncIPeSWFpfQOLpeoHovnd4WRXlEk6qFw4Bqo-LAhvQleY3zOeI37TLOUIfgxRdFHRdXzkIP-g/s320/waitingforsurgeryVNS.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"So, where are we off to now then mum?"</td></tr>
</tbody></table>
<span style="font-family: "arial" , "helvetica" , sans-serif; line-height: 21.3px;">Second on the list for his VNS surgery, it was nearly midday before Hugh was called down to theatre. Unaware of what lay ahead he sat smiling in his wheelchair in the flimsy cotton gown. The theatre staff were brilliant and thoughtfully allowed me to take him down in his chair; he'd feel more comfortable and less threatened that way, rather than wheeling him on his hospital bed. He smiled all the way down to theatre, enjoying the new adventure.</span></div>
<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif; line-height: 21.3px;"><br /></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="line-height: 21.3px;">Although six years old, cognitively he's still like a baby so there was no way to explain what was going to happen to him. Instead he sat in my lap and I cuddled him and sang nursery rhymes as they held the gas mask in front of his face. I admit I had to swallow a rather large lump in order to keep singing. I felt like I was tricking him somehow. </span></span></div>
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</span>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="line-height: 21.3px;"><br /></span></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif;"></span>
<br />
<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="line-height: 21.3px;">The hard part, I find, is handing him over, limp and lifeless, when the gas has done it's job. Leaving your child with strangers, when they're so fragile and vulnerable is utterly soul destroying. It took every ounce of my strength to walk away after giving him one last kiss on the head. </span></span></div>
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</span>
<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="line-height: 21.3px;"></span><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="line-height: 21.3px;"></span></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><span style="background-color: rgba(255, 255, 255, 0); line-height: 21.3px;"><div style="text-align: justify;">
<span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "arial" , "helvetica" , sans-serif; line-height: 21.3px;">I'm not sure it gets any easier, watching your child have a general anaesthetic. Despite his complex needs Hugh has had comparatively few GAs - two for MRIs of his brain, one to have his tonsils and adenoids out and one to have his gastrostomy feeding tube put in. It's probably more than most six-year-olds but it's significantly less than some children with conditions like Hugh's. </span></div>
<div style="text-align: justify;">
<span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "arial" , "helvetica" , sans-serif; line-height: 21.3px;"></span><br />
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</span><span style="background-color: rgba(255, 255, 255, 0); line-height: 21.3px;"><div style="text-align: justify;">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNF9wUvIbKDXD3RXiCCB7CXaOot1quT4-p2G_fFC_Rei0hoZpqlVaZA0WaSHXZ7Hyj8Xy-4UoBe2khyphenhyphengy23aW1iD705qg6TBZqBCKIbMSEQMWvm9YccD-xQ5qpRMy-Av6YxKrlx4jUBac/s1600/waiting.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNF9wUvIbKDXD3RXiCCB7CXaOot1quT4-p2G_fFC_Rei0hoZpqlVaZA0WaSHXZ7Hyj8Xy-4UoBe2khyphenhyphengy23aW1iD705qg6TBZqBCKIbMSEQMWvm9YccD-xQ5qpRMy-Av6YxKrlx4jUBac/s200/waiting.png" width="157" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Waiting ... just waiting...</td></tr>
</tbody></table>
<span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "arial" , "helvetica" , sans-serif; line-height: 21.3px;">The VNS surgery takes about an hour. They make a cut in the chest area to place the electronic device and another on the neck where they attach the electrodes to the vagus nerve. Thankfully, they don't have to go anywhere near his actual brain during surgery. </span></div>
<div style="text-align: justify;">
<span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "arial" , "helvetica" , sans-serif; line-height: 21.3px;"></span><br />
<span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "arial" , "helvetica" , sans-serif; line-height: 21.3px;"></span></div>
</span><span style="background-color: rgba(255, 255, 255, 0); line-height: 21.3px;"><div style="text-align: justify;">
<span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "arial" , "helvetica" , sans-serif; line-height: 21.3px;">I was told to expect Hugh back after around two hours, by three hours I was becoming quite anxious, pacing the ward and moving things from the locker to the bedside table and back again. Finally after 3.5 hours we were called down. He'd struggled to breathe after surgery and they'd had to keep him intubated for longer than expected and when he did finally start breathing on his own his oxygen levels were too low. When I saw him in the post-op recovery room, he looked so small and frail. Whilst I know that this is the best chance we have of controlling his seizures, I couldn't help but feel guilty for putting him through the pain.</span></div>
<div style="text-align: justify;">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2ZZJNjoY2BqVakOwf2WGRyt9GuzxFrc4M3cE5yKPpi357k_8qzUd8ZqcrtxRmxXKS6PqYmF8CJEpqXFD4HDLyTAdscyyCjJBVYkqtJywdZUALczD64z3ERbB9B3tWWDeKsD07rCsaBVk/s1600/aftersurgery.png" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2ZZJNjoY2BqVakOwf2WGRyt9GuzxFrc4M3cE5yKPpi357k_8qzUd8ZqcrtxRmxXKS6PqYmF8CJEpqXFD4HDLyTAdscyyCjJBVYkqtJywdZUALczD64z3ERbB9B3tWWDeKsD07rCsaBVk/s200/aftersurgery.png" width="153" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Back on the ward, after surgery.</td></tr>
</tbody></table>
<span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "arial" , "helvetica" , sans-serif; line-height: 21.3px;"></span><br />
<span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "arial" , "helvetica" , sans-serif; line-height: 21.3px;"></span></div>
</span><span style="background-color: rgba(255, 255, 255, 0); line-height: 21.3px;"><div style="text-align: justify;">
<span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "arial" , "helvetica" , sans-serif; line-height: 21.3px;">Although it took him quite some time to come round, the operation was deemed a success. Hugh remained in hospital overnight and was discharged the following day, with an appointment to switch on the device in 10 days time.</span></div>
<div style="text-align: justify;">
<h3>
<span style="font-size: large;"><span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "arial" , "helvetica" , sans-serif; line-height: 21.3px;"><br /></span><span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "arial" , "helvetica" , sans-serif; line-height: 21.3px;">And so, Hugh's VNS adventure begins. </span></span></h3>
</div>
</span><span style="background-color: rgba(255, 255, 255, 0); line-height: 21.3px;"><div style="text-align: justify;">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8iA14R3_I5Rilz8uvmxIvCJzJQdQ_LWl7DF26rCtHICK1tGw7ZR6oYxcA7kZY_lGQ6KkO5WstBHKqMwVS0rHTBeTxNi_RNn6rUGCyXO1YS5G7xKBp1qZPYtf0HPrJs5ZHUY-GpHW-d-g/s1600/goinghome.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8iA14R3_I5Rilz8uvmxIvCJzJQdQ_LWl7DF26rCtHICK1tGw7ZR6oYxcA7kZY_lGQ6KkO5WstBHKqMwVS0rHTBeTxNi_RNn6rUGCyXO1YS5G7xKBp1qZPYtf0HPrJs5ZHUY-GpHW-d-g/s320/goinghome.png" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Adventure? I'm up for an adventure ..."</td></tr>
</tbody></table>
<br />
You can find out why Hugh needs Vagus Nerve Stimulation therapy here: <a href="http://www.littlemamamurphy.co.uk/2016/07/the-next-step-vagus-nerve-stimulation.html" target="_blank">The Next Step</a><br />
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</div>
<div align="center">
<a escapades="" href="http://ourlittleescapades.com/small-steps-amazing-achievements/" little="" target="_blank" title="“Our"><img alt="“Our" src="http://i1322.photobucket.com/albums/u565/EthansEscapades/Wordpress%20Blog/SmallSteps_zps72385117.jpg" escapades="" little="" style="border: none;" /></a></div>
Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com6tag:blogger.com,1999:blog-3268441232099307652.post-33536733102584569422016-09-08T09:38:00.001+01:002016-09-08T09:38:18.410+01:00Waiting for VNS surgery<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJbU9x_tyzQLtslv93DTq6vJHJ7LcCltBoomDW5T2ZyIZSKuUk3mZMo5MAGPfYjh6G6dYyBkLWFkqu_Oll6jaXAUfYprR-K4q6TZVSnkXTFEOPff4DnId-fcseRToestI81nF_3_B9csM/s1600/IMG_7626.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJbU9x_tyzQLtslv93DTq6vJHJ7LcCltBoomDW5T2ZyIZSKuUk3mZMo5MAGPfYjh6G6dYyBkLWFkqu_Oll6jaXAUfYprR-K4q6TZVSnkXTFEOPff4DnId-fcseRToestI81nF_3_B9csM/s320/IMG_7626.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Waiting on the ward</td></tr>
</tbody></table>
<div style="text-align: justify;">
<span style="font-size: large;">Thanks to a cancellation, </span><a href="http://www.littlemamamurphy.co.uk/2016/07/the-next-step-vagus-nerve-stimulation.html" target="_blank"><span style="font-size: large;">Hugh's VNS surgery</span></a><span style="font-size: large;"> happened rather unexpectedly towards the end of August. With only hours to pack and get to the hospital, I didn't really have enough time for the nerves to hit, or the realisation of what was happening to sink in. But that night after his bloods had been taken and we'd been prepped for surgery the next morning, I sat by his bed and began to think about what was in store. </span></div>
<div style="color: #454545; font-family: "uictfonttextstylebody"; text-align: justify;">
<span style="font-size: large;"></span> </div>
<div style="color: #454545; font-family: "uictfonttextstylebody"; text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Whilst I can't deny a large part of me was anxious about the general anaesthetic and the operation in general, my overriding feeling was one of hope. Hope for an epilepsy free future. Or at least one where epilepsy didn't completely rule (and often ruin) our lives.</span></div>
<div style="color: #454545; font-family: "uictfonttextstylebody"; text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"></span> </div>
<div style="color: #454545; font-family: "uictfonttextstylebody"; text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I imagined being able to go on holiday as a family to visit Hugh's cousins in Ireland; taking him to see where his grandparents (and great grandparents) were born, and where his dad and I spent all our summers as children. I thought about the beautiful beaches we'd visit, the rocky coastal paths we could stroll along.</span></div>
<div style="color: #454545; font-family: "uictfonttextstylebody"; text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"></span> </div>
<div style="color: #454545; font-family: "uictfonttextstylebody"; text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I imagined not having to plan everything around knowing where the nearest hospital is, without having to 'risk assess' every journey and constantly thinking about what you'd do in an emergency. Imagine driving without checking him repeatedly to see if he was breathing and without always planning where to pull in to resuscitate him, should the need arise.</span></div>
<div style="color: #454545; font-family: "uictfonttextstylebody"; text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"></span> </div>
<div style="color: #454545; font-family: "uictfonttextstylebody"; text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I thought about Hugh having sleepovers with his brother at their friend's house and how I could leave him to play with other kids without me constantly being there watching him, checking. I thought how his granny would love having both boys over to her house for a sleepover and how Stephen and I wouldn't have to carefully plan how to use the allocated care hours we get so that we can go out together.</span></div>
<div style="color: #454545; font-family: "uictfonttextstylebody"; text-align: justify;">
<span style="font-size: large;"></span> </div>
<div style="color: #454545; font-family: "uictfonttextstylebody"; text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: large;">And I thought about the effects his seizures must have on Hugh. Almost every night for 10 minutes or more, his whole body stiffens and spasms. His legs and arms must constantly ache from that. He can lose seconds and sometimes minutes at a time during his regular </span><span style="font-size: large;">absence seizures too- how confusing must that be for him? Every few months he has clusters of seizures that terrify him- he screams and cries in pain and fear. I'd love nothing more than to never see that terror in his eyes as he looks at me pleading for it to stop and I'm powerless to do nothing other than sedate him. The huge apneoic seizures (where he stops breathing) that I live in fear of, threaten to starve his brain of oxygen, threaten to kill him each time they happen. He's lost skills in the past because of them- the ability to swallow, the ability to smile. He's managed to relearn lots of things but each apneoic seizure threatens to damage his brain and take away those skills he's worked so hard for. When he does, thankfully, recover, he is exhausted and will sleep for hours. Imagine him never having to go through those again? </span></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGIZxxGTbD7MyydM66VkC0uO2BAuen08vGRXfWCVlVnvH6ROyrYeO2mOYrZUPcPRS5uUn56gtyxVjV2Xf5rSwF9lo4r6G5ajEeAfTLtA6ya-pNczabnbEYqJbYhcl1pl65lTLsx9NCfuU/s1600/IMG_7641.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGIZxxGTbD7MyydM66VkC0uO2BAuen08vGRXfWCVlVnvH6ROyrYeO2mOYrZUPcPRS5uUn56gtyxVjV2Xf5rSwF9lo4r6G5ajEeAfTLtA6ya-pNczabnbEYqJbYhcl1pl65lTLsx9NCfuU/s320/IMG_7641.JPG" width="240" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Sweet dreams before surgery</span></td></tr>
</tbody></table>
<div style="color: #454545; font-family: "uictfonttextstylebody"; text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"></span> </div>
<div style="color: #454545; font-family: "uictfonttextstylebody"; text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Of all the aspects of Hugh's numerous and complex disabilities and health needs, </span><a href="http://www.littlemamamurphy.co.uk/2016/06/it-wasnt-worst-seizure-but.html" target="_blank"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">his epilepsy is by far the most challenging</span></a><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">. Without it, life could be so much better for him and for us. </span></div>
<div style="color: #454545; font-family: "uictfonttextstylebody"; text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"></span> </div>
<div style="color: #454545; font-family: "uictfonttextstylebody"; text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">VNS therapy is our last hope at getting rid of that evil demon from our lives once and for all. As I sat, watching him sleep peacefully, I felt hopeful that this was our miracle, the thing that would change Hugh's life and I prayed to God that it would work. </span></div>
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<span style="font-family: "arial"; font-size: large;"></span> </div>
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<a escapades="" href="http://ourlittleescapades.com/small-steps-amazing-achievements/" little="" target="_blank" title="“Our"><img alt="“Our" src="http://i1322.photobucket.com/albums/u565/EthansEscapades/Wordpress%20Blog/SmallSteps_zps72385117.jpg" escapades="" little="" style="border: currentColor;" /></a></div>
Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com4tag:blogger.com,1999:blog-3268441232099307652.post-66645802121883191042016-07-20T23:23:00.001+01:002016-07-20T23:23:53.783+01:00The Big Build - Birmingham Style
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnRBNBjmXxY4xrkVItGyGjwGwANikaSDsCFg50MbQWu-nVFkN9mNapxMxoCWrQHQx7LDP2wqbGn7cXo0WzBryTQTY_1Fb4Bi-OUg9oGkMGuY3PSM1A5OQxm6IihUR7i4jf06e2-Zk7O3I/s1600/jcblift.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="171" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnRBNBjmXxY4xrkVItGyGjwGwANikaSDsCFg50MbQWu-nVFkN9mNapxMxoCWrQHQx7LDP2wqbGn7cXo0WzBryTQTY_1Fb4Bi-OUg9oGkMGuY3PSM1A5OQxm6IihUR7i4jf06e2-Zk7O3I/s200/jcblift.png" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://wessexlifts.com/News/DIY-SOS-VM-Homelift.html" target="_blank">source</a></td></tr>
</tbody></table>
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt; text-align: justify;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;">I
love watching DIY SOS The Big Build.<span style="mso-spacerun: yes;"> </span>I
love seeing people having their houses transformed.<span style="mso-spacerun: yes;"> </span>I love the before and after shots.<span style="mso-spacerun: yes;"> </span>I love the joy and wonder on their
faces.<span style="mso-spacerun: yes;"> </span>I love how the houses are always
designed to meet the families’ needs and the clever, practical solutions that
the team create.<span style="mso-spacerun: yes;"> </span>I love that despite
there often being a story of disability or illness that has prompted the need
for The Big Build, the end result never looks like a hospital.<span style="mso-spacerun: yes;"> </span>I’ve seen them fit a through floor lift
painted yellow to look like a digger, I’ve seen brightly coloured wet rooms for
children that look fun not clinical.<span style="mso-spacerun: yes;"> </span>It
really is amazing and inspiring.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;"><o:p> </o:p></span></div>
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<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;"><o:p> </o:p></span></div>
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<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;">Yet
the thing I love most about DIY SOS, the thing that invariably moves me to
tears, is seeing whole communities come together for the sake of one family.
The house is always full of tradesmen all willing to give up their time and a
day’s wages to help someone who needs it.<span style="mso-spacerun: yes;">
</span>There are reams and reams of people on hand supporting Nick Knowles and
the team to make the types of adaptions and improvements that will make life
more manageable and less challenging for the family involved.<span style="mso-spacerun: yes;"> </span>It’s not so that they can be on TV, most
people are rarely in shot for more than a few seconds, and it’s not to
advertise their businesses – the BBC won’t allow that so even branded work
shirts aren’t shown.<span style="mso-spacerun: yes;"> </span>No, it’s simply to
come together, to help someone who needs it.<span style="mso-spacerun: yes;">
</span>At a time when there is so much hate and fear in the world, isn’t it
great to see love like that?<span style="mso-spacerun: yes;"> </span>To see
people doing good things for others, just because.<o:p></o:p></span></div>
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<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;"><o:p> </o:p></span></div>
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<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;">Imagine
if real life were like that?<span style="mso-spacerun: yes;"> </span>Imagine if
such things didn’t just happen on the TV?<o:p></o:p></span></div>
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<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;"><o:p> </o:p></span></div>
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<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;">Our
house isn’t really geared up for Hugh’s needs.<span style="mso-spacerun: yes;">
</span>It’s a bungalow which is great as I don’t have to lift him up and down
the stairs, but I do have to drag his wheelchair up and down the front step
every day.<span style="mso-spacerun: yes;"> </span>His bedroom door is wide
enough to get his wheelchair into, so I don’t have to carry him too far to get
him to bed, but he can’t go anywhere beyond the living room.<span style="mso-spacerun: yes;"> </span>The doorway into the kitchen is too narrow to
fit his chair through.<span style="mso-spacerun: yes;"> </span>Recently his
increase in seizures have meant that now, more than ever, I can’t turn my back
on him.<span style="mso-spacerun: yes;"> </span>Making dinner involves me
parking his chair by the kitchen door and popping backwards and forwards to
check on him, or putting him to bed and watching him on the video monitor.<span style="mso-spacerun: yes;"> </span>Hanging out the washing is all but impossible
if Hugh is home.<span style="mso-spacerun: yes;"> </span>I can’t get him into
the conservatory either and the only way to get Hugh into the garden is out the
front door (down the step) and up the side of the house.<span style="mso-spacerun: yes;"> </span>For a boy that loves being outside, he spends
precious little time in the garden.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;"><o:p> </o:p></span></div>
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<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;">We
need to make some changes.<span style="mso-spacerun: yes;"> </span>We need a new
entrance into the side of the house where we can get decent ramped access without
losing all our parking space on the drive.<span style="mso-spacerun: yes;">
</span>We need a large kitchen/dining area where all the family, including Hugh
and his enormous bean bag, can be together while I’m preparing dinner.<span style="mso-spacerun: yes;"> </span>We need level access out into the garden so
that Hugh can come out and in as he pleases.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
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<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;"><o:p> </o:p></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAjJdnw-rECbkQ9yPPWXLIkcbts8jV8ozWy3SBS5dYhVfTC6Vb_3ZVb7tfjNc_sFSdMoVgpBUSuEh_wxgyAfc8UzYaMT3sMg803Hr9jjGNJUO2PpO07iQLPIjkaMT6rnhbo5i_zSV1KyI/s1600/IMG_6251+%255B11780%255D.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAjJdnw-rECbkQ9yPPWXLIkcbts8jV8ozWy3SBS5dYhVfTC6Vb_3ZVb7tfjNc_sFSdMoVgpBUSuEh_wxgyAfc8UzYaMT3sMg803Hr9jjGNJUO2PpO07iQLPIjkaMT6rnhbo5i_zSV1KyI/s200/IMG_6251+%255B11780%255D.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Digging for treasure.</td></tr>
</tbody></table>
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<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;">We
need a Big Build.<o:p></o:p></span></div>
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<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;"><o:p> </o:p></span></div>
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<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;">It
turns out, you don’t need Nick Knowles and TV cameras after all though.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;">You
just need some friends.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;">Some
good friends. <o:p></o:p></span></div>
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<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;">Really
good friends.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
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<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;"><o:p> </o:p></span></div>
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<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt; text-align: justify;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;">The
last few weekends and a fair few evenings have seen our garden packed with a
rabble of likely lads all doing their bit to make life better for us, for
Hugh.<span style="mso-spacerun: yes;"> </span>The skilled and the
slightly-less-skilled-but-keen have worked tirelessly digging footings, pouring
cement, ripping out the existing conservatory, laying bricks and shifting
barrowload after barrowload of rubble to the skip at the front of the
house.<span style="mso-spacerun: yes;"> </span>It hasn’t looked easy, especially
not in this blistering heat, and all they’ve needed in return is few cups of
tea, a sandwich here and there and the odd can of beer <s>or 3.<o:p></o:p></s></span></div>
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<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<s><span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;"><o:p><span style="text-decoration: none;"></span></o:p></span></s> </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBdkRlFtP90p0GWTPT60tf02Fv7Foz_6oZdZilppHnafaXXiN9RMxFY0mpLsAAEISCYTEM3wnNMEwacMnnNpmCcOotVoGesRTI88pMrN8TrAWAa9R_nPSU-AkgIoCiZ0QSDOF0EYyHP44/s1600/IMG_6237+%255B11778%255D.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBdkRlFtP90p0GWTPT60tf02Fv7Foz_6oZdZilppHnafaXXiN9RMxFY0mpLsAAEISCYTEM3wnNMEwacMnnNpmCcOotVoGesRTI88pMrN8TrAWAa9R_nPSU-AkgIoCiZ0QSDOF0EYyHP44/s200/IMG_6237+%255B11778%255D.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sean getting stuck in.</td></tr>
</tbody></table>
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<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt; text-align: justify;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;">It
was humbling to look out, that first Saturday morning at 7.30 and see them all
there, ready to help.<span style="mso-spacerun: yes;"> </span>Giving up their
Saturday morning lie-ins (should they be so lucky), their weekends with their
own children, for us.<span style="mso-spacerun: yes;"> </span>It is by no means
a small task they have undertaken and I know that some days have been
particularly hard work.<span style="mso-spacerun: yes;"> </span>Yet undeterred
they return, after a full day’s work or on their days off to build a better
life for Hugh.<o:p></o:p></span></div>
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<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;"><o:p> </o:p></span></div>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDgc2Z5VEBV-a4iarf-TGU_vl-BOGoaBEcK3gT8r0fwGyQ7yeBSaUZ-5IzhzizPRqiXL-KcNQcEr6PqY-fpwgUQUel7I-DoeMpQfeRPy1lpXNGliXQeZhUOX0kA3ascFu_uRbs9QmgKAQ/s1600/FullSizeRender+%255B12727%255D.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDgc2Z5VEBV-a4iarf-TGU_vl-BOGoaBEcK3gT8r0fwGyQ7yeBSaUZ-5IzhzizPRqiXL-KcNQcEr6PqY-fpwgUQUel7I-DoeMpQfeRPy1lpXNGliXQeZhUOX0kA3ascFu_uRbs9QmgKAQ/s200/FullSizeRender+%255B12727%255D.jpg" width="178" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Never too young to learn a skill!</td></tr>
</tbody></table>
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt; text-align: justify;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;">The
difference this will make to our lives, once complete, will be huge.<span style="mso-spacerun: yes;"> </span>The simple pleasure of being able to bring
Hugh out into the garden when the sun is shining can’t be underestimated.<span style="mso-spacerun: yes;"> </span>Being able to bring him easily into the
house, without dragging a muddy wheelchair into his bedroom or the living room
will be lovely.<span style="mso-spacerun: yes;"> </span>I can’t quite convey in
words how much this means to me, to us as a family.<span style="mso-spacerun: yes;"> </span>I get teary-eyed and a little choked up
trying to explain how simply amazing this is and how lucky I feel to have
people in our lives that would do this for us.<span style="mso-spacerun: yes;">
</span>We are truly blessed.<o:p></o:p></span></div>
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<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;"><o:p> </o:p></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt; text-align: justify;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;">One
of the lads joked that I’d have to make a DIY SOS style speech when it was all
complete.<span style="mso-spacerun: yes;"> </span>So here’s my speech now,
because I’ve no doubt I’ll be sick of the sight of you all (and you of me, and
each other) by the time it’s finished.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;"><o:p> </o:p></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;">Thank
you. <o:p></o:p></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt; text-align: justify;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;">Thank
you to those who have already spent far too many hours here and to all of you
who will be in the coming weeks and months. <o:p></o:p></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;">From
the bottom of our hearts thank you.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;"><o:p> </o:p></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;"><o:p> <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmeTxplh3RgMhWQXwgkkvvoVjkkL1-YbxxOT_5oeOpNpmA5MEQFbl9F4qqfd3sLrcWuaDxJ5WtstzPPEWuhDzsg8hpxQxu6uVohdw6fkNhyphenhyphenrvfWpebPZLJp0N_m28nv6KIKzX7cb2RHk8/s1600/Friends-show-their-love-in-times-of-trouble-not-happiness.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="160" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmeTxplh3RgMhWQXwgkkvvoVjkkL1-YbxxOT_5oeOpNpmA5MEQFbl9F4qqfd3sLrcWuaDxJ5WtstzPPEWuhDzsg8hpxQxu6uVohdw6fkNhyphenhyphenrvfWpebPZLJp0N_m28nv6KIKzX7cb2RHk8/s320/Friends-show-their-love-in-times-of-trouble-not-happiness.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://www.squoted.com/euripides-friends-show-their-love-in-times-of-trouble-not-happiness/" target="_blank">Source</a></td></tr>
</tbody></table>
</o:p></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;"><o:p> </o:p></span></div>
<br />
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt;">
<span style="font-family: "Berlin Sans FB",sans-serif; font-size: 12pt;">Who
needs Nick Knowles anyway?<o:p></o:p></span></div>
Little Mama Murphyhttp://www.blogger.com/profile/02807052833900011141noreply@blogger.com6