Here's Luke channeling Bob Dylan in the car on the way to PT this morning. What a cool dude! This is a quick note to let you know that we found out today that Luke has been approved (finally) for full Medicaid cover under the Florida Model Waiver program. This means all his medical costs will be fully covered from now on. For those in the UK, it's a bit like getting the NHS for him. This is great. We've had medical insurance cover for him all along, but there's still been a lot to pay out, partly because insurance doesn't cover everything he needs (see previous posts for our struggles to get nursing care for him) and partly because the patient (or parent in this case) always has to pay a portion due to deductibles and co-pays etc. There are only five slots for the Model Waiver program in the whole of Florida so we are very lucky. Something good blowin' in the wind. Off to Pittsburgh on Sunday! Gasparilla is the pirate festival in Tampa held at the end of January every year to "commemorate" the invasion of José Gaspar (Gasparilla), a mythical Spanish pirate captain who supposedly operated in Southwest Florida in the 1800's. There's no evidence that he actually existed, but it's a great excuse for a party on Bay Shore - so much so that it happens twice on consecutive weekends. It's a bitter-sweet time for us because it was at the end of January in 2013 that we had confirmation of Luke's diagnosis, so this is when we remember back to the day knew for sure that Luke had MLD and our lives changed forever. But he still looks great in his pirate garb, right?! Interesting variation having a dolphin on your shoulder for sure! So, how's he doing? Pretty well, by and large. He had a cold with bunged up sinuses a few weeks ago, but he's well over that now. We have his vomiting under better control now because we are not trying to stuff him like a Christmas goose - thanks to Dr Escolar's team for setting us straight on his calorific needs, which we were far exceeding. He still has his moments, but they are much fewer and further between. We are planning to consult with a nutritionist to make sure we are doing the best we can on his diet. His hips are still causing him trouble and we have brought forward our trip to Pittsburgh so we can get everything checked out and hopefully make some decisions on what - if anything - we should do about it. We'll be up there on the 16th and 17th February. So much for waiting for the end of winter... He's been going to school pretty regularly, including a trip to the zoo last Wednesday. Thanks to his nursing team that all seems to be going smoothly. So, cool runnings for the moment. We'll be back with an update after Pittsburgh to let you all know how he looks from the inside as well as the outside. Thanks for checking in. |
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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