(I still think he does a great impression of Matt Damon).
Luke's smile is becoming more and more elusive these days, not because he is less happy (we think/hope), but simply because he is less able to control the muscles that make it happen. It's heartbreaking because it's a beautiful thing when it spreads across his face. Well, on Tuesday morning at his regular PT session, one day after the Botox injections he treated us to this rare delight while shaking one of his therapy toys. And more wonderful still, it lasted long enough for me to snap it on my phone and be able to share it with you all. Sit back and enjoy.
(I still think he does a great impression of Matt Damon).
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Some of you may have already seen this either via email on our Facebook page, so apologies for duplication, but we are trying to raise awareness of MLD by hijacking the Ice Bucket Challenge currently doing the rounds for ALS. You can watch Charlotte, Yannick, Luke's uncle Nigel (the day after his wedding bless him) and myself getting buckets of ice water emptied over us on YouTube:
https://www.youtube.com/watch?v=TRd_Aj0e-Xg https://www.youtube.com/watch?v=P2oac2YyEkw https://www.youtube.com/watch?v=cwBaU25OCz4&feature=youtu.be https://www.youtube.com/watch?v=LNhbdIIfZrA&feature=youtu.be We hope this will result in some donations to NDRD in Pittsburgh (Nigel even nominated Dr Escolar to take the plunge!). I encourage you all to take up the challenge! Luke has settled back into his rhythm since returning home from South Carolina, but a few things have changed. Most notably, his time at daycare has finally come to an end. At the start of the new school year in late August it became pretty clear that they were no longer able to take care of Luke in the way they wanted to. A fresh intake of students, some staffing challenges and Luke's gradual deterioration meant that we all had to agree that the time had come, albeit about 12 months later than we had expected based on medical advice. We will be forever grateful to the staff, children and parents of Children's Nest for making Luke so welcome and taking him into their hearts - both very easy and very hard all at the same time. So what did we do? At short notice Luke's part-time nanny Danielle agreed to become his full time nanny and we were and are very happy that she is willing and able to do this. During the week she arrives at 8.30am and stays until 4.30pm while we go to work most days. A labor of love for sure. So, what's with the title? I thought you'd never ask. On Monday Luke went to the local Shriner's Hospital on the USF campus to have Botox injections in the adductor muscles of his legs. Despite the Baclofen and Valium doses we give him, Luke has continued to stiffen up, especially in his legs which have become more or less permanently crossed, to the point where dislocation of his hips is becoming a significant risk. We tried another medication called Zanaflex, but this seemed to upset his stomach (read make him vomit) so Team Fernandez (Dr Ray Fernandez his neurologist and Ms Danielle Fernandez his PT - no relation) suggested a more direct approach: Botox to paralyze the muscles causing the problem. Dr Escolar in Pittsburgh agreed that this should help as they have had some success with other MLD kids using this method. So far so good. Luke tolerated the procedure well; he had to be anaesthetized for the injections, but other than that it was fast and straightforward. It takes a few days for the Botox to do its thing, but we have noticed today a definite improvement (reduction) in his spasticity. Plus his legs look a good ten years younger. So we keep calm and carry on through these changes and move on to the next day and the next, and before you know it he will be four! Watch out for birthday pictures in the next exciting installment... September? Already? You have to be kidding me. So much for posting updates from Luke's Make-a-Wish trip to South Carolina. That was back in July. Now we are fast approaching Luke's 4th birthday on October 1st. So, the trip went very well (check out the pictures page). If we are honest, we have to say it was a challenge; for Luke and for us, but as Dr Aubourg (MLD Dr from Paris) said right at the start "you must carry on doing the things you would normally do". So right, and so important to remember every day. We realized on the trip that Luke is happiest at home in his element, where his routine is set and everything is to hand. But the trip to Myrtle Beach holds great memories for all of us: loading up the Yukon XXXL (aka the Tardis) with the kid kart, the stander, the jogging stroller...; the whistle-stop tour of St Augustine; the two lane crack-top that is I95 in South Carolina (please guys, get to work on it!); waving to Charleston as we whizzed past over the bridge; arriving in Myrtle Beach with its world record number of mini-golfs; settling in to the apartment right on the beach (lovely view); the sound of the surf all day and all night (sweet dreams are made of this); the "welcoming" Sunday night fireworks that carried on all week (sorry guys, but it gets old pretty quickly when you are trying to get Luke to sleep); the mini-golf; long walks on the beach; the ice cream; the aquarium; the mini-golf; the lightening storm; the lobster meals; the mini-golf; loading up the Yukon XXXXXL with everything we brought plus a whole lot of stuff we bought on the trip (what was dad thinking? A bean-bag for heaven's sake); the drive back all in one day; did I mention the mini-golf? Happy to be home, but glad for having had our adventure together. Thanks again to Make-a-Wish. What a simply great organization.
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Luke ParkesLuke is six. He lives in Tampa, Florida. His mother is French and his father English. He has an older sister who is 17 and an older brother who is 14. CategoriesArchives
December 2016
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