Here's Luke with his new school mates at Grady Elementary. He's bundled up against the elements, it being a chilly 40F (4C in new money) during the school run, making it the coldest day in Tampa so far this year. This was a bit of a dry run - checking out how things worked before he goes more or less full time after Thanksgiving. Everything went smoothly and Luke had a great time; everyone making him feel very welcome. GO TIGERS!
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Well, that's undoubtedly true, but we now know that health insurance, when it comes up trumps, can buy you a whole lot of time and peace of mind. I have to open with the customary apology for the embarrassingly long time between posts, but so much has been happening, and so many good things, that I hope you can forgive us - again. First of all, back in October we had a call from our secondary health insurance for Luke through Florida Kidcare telling us they had approved (yes, approved!) in-home nursing for Luke. As before, this had been declined by our primary insurance, but Florida Kidcare has stepped up and done the right thing. And what a difference this makes. We now have a wonderfully experienced and compassionate nurse giving Luke the care and attention he needs, 8 hours a day, 7 days a week. We still have some gaps to fill, but this is a major step in the right direction. If you have been reading these pages, you will know that we have a lot of very willing and loving friends who have stepped in to help us take care of Luke, but as his condition has progressed we have come to know that there is no substitute for professional care. It is such a relief for all of us to know he is receiving this, and as we are now relieved of many of the practicalities of caring for Luke, it gives us more time to concentrate on giving him the love he needs, and also to be a more "normal" family. And it gets better. At the same time we have been applying to have Luke enrolled in the state school system. A team of very dedicated staff from the local school district have been assessing Luke's condition and needs and they have now agreed that as of this week he will be attending Grady Elementary School here in South Tampa! How cool is that?! This is dependent on his nurse being able to accompany him to school on the specially provisioned bus and look after his medical and nutritional needs while at school, so the fact that these two developments have come at the same time seems more remarkable still. From his time at Children's Nest we know that Luke thrives in the company of other children, and sure enough you could see his face light up during our visit to the classroom at Grady last week. We are super excited about this and cannot say enough about how grateful we are to all the people who made this happen. Thank you from the bottom of or hearts. As to Luke's condition, the challenges continue of course, but having a nurse looking after him every day certainly helps us understand better how to deal with these. We retuned to Shriner's Hospital last week to have his hips checked out. The spasticity in his legs and the fact that his hip joints have never properly formed because he hasn't walked, mean that he is at high risk of dislocation. The Botox injections have helped, but the effect wears off pretty quickly and he can't have another round of injections until March. The net result is that he's OK for the moment but we will have to watch him closely. We'll review again in March when we re-do the Botox, and think about the possible options for surgery. We also had his wheel chair adjusted and made ready for his trips to school on the bus. The other challenge at the moment is his GI motility. We have got the stage where almost daily enemas are needed to keep things on track, even though he has been having some bowel movements on his own recently (way to go Luke!). But that's routine stuff for his nurse, so again we are being relieved of this duty and can concentrate on the hugs and kisses. Much more fun! Love and best wishes to all, and thank you again for taking the time to check in with Luke. |
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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