We are overdue for a report from Luke's trip to Pittsburgh in May. We went back to see Dr Escolar and her NDRD team at Pittsburgh Children's Hospital for the usual round of tests and an update on Luke's progress. Previously we have ended up travelling in the winter which even the locals will admit is no fun up there. So this time we targeted May thinking it would be pleasant in the spring, blossom on the trees and all that good stuff. Ha ha. What were we greeted with as we came in to land at Pittsburgh International? You guessed it: snow! Luckily it didn't last long and Luke did superbly on the flight and the whole two days really. JetBlue looked after us really well as usual, and on the ground our great friends Mark and Barbara hosted us again in their lovely house on the side of a hill (everything in Pittsburgh seems to be on the side of a hill). Can't say enough about how much we appreciate your help! Getting there and back without incident is half the battle. The other is getting Luke to all the tests in the hospital on time. This picture shows him in the sound booth having his auditory responses tested. To cut to the chase, the main news is that the MRI shows the disease is taking its ugly toll on Luke's brain. He's had some bleeding and some areas are continuing to show the damage of the Leukodystrophy. So, not great, but we know this thing only goes forwards, not backwards, and knowledge is important for keeping Luke comfortable as always. We had been noticing him suffering more frequently sudden bouts of pain, thinking it might be his tummy acting up, his dislocated hips rubbing, or the neurological pain that comes with MLD. But the MRI suggested another possibility - headaches. So we have added in some medication to help with this, and spread out his doses of all the other meds that can alleviate discomfort and that seems to have helped a lot. Less vomiting and less crying out suddenly. As always we are grateful for the dedicated group at NDRD and the support they give us. Every time we go there we seem to find out exactly what we need to for us to take better care of Luke. It's bitter sweet, because we also see what a terrible toll the disease is taking, but any time and any way we can make him more comfortable is a true blessing. So thanks again to Dr Escolar and the team.
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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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