Okay, I’ve been promising this post for about a month-and-a-half now, trying to put the words together; then we hit another milestone of note, and in my head this gets longer. I figure I should put this down now before we have any appointments this week.
If you do follow our facebook page, some of this will sound familiar. Sometimes it’s easier to put a thought down or post just a few images rather than something longer and more thought out. So don’t hold your breath for my upcoming book “That’s My Pu: Raising A Pretty Awesome Dude With A Not-So-Awesome Disease“.
So, in our last episode, Armand was getting his feeding tube put in, and just starting his feedings. His formula consists mostly of KetoCal, with Polycose mixed in for added carbs and calories. He adjusted well to the tube itself, and ballooned up like he was being inflated with helium. Within 3-4 weeks he gained over 4lbs, picked up an extra chin and a belly. He had shown much greater energy (if not strength), being much more interactive with his environment and the people around him. He still doesn’t speak, but he was reaching for things or people, watching his surroundings. I’ll comment on reasons for using past tense in a moment at a future time.
In late August he started pre-school. His school is geared towards kids with special needs, but his class is about 50% typical developing kids as well. He gets extra therapy with speech, occupational, and physical (in addition to the therapy he already receives weekly through Dayton Children’s Hospital), and the teacher does great work to make sure that Armand is engaged with his class and that they are engaged with him. I brought his class some ice cream one day when I was able to leave work early enough to pick him up from school. I had told my dad (his usual post-school chauffeur) that I was attempting to buy some love from his classmates (“let’s be friends with the kid whose dad brings us ice cream!”), but was told I wouldn’t need to — the teachers almost have to pry the kids away from his while they’re all trying to say goodbye to him. So for a kid who can’t speak and doesn’t move around a lot, he’s already pretty popular. Must be his good looks.
For those seeing for the first time in his new stroller/wheelchair hybrid, it’s called a Kimba, and allows him to sit up tall or rest his head, the stroller look keep it from having the “wheelchair” stigma, and comes with all sorts of accessories like a tray and a canopy. We still do try to work with him to get him to walk again, and use his Mustang, but for around the town use we have his new Kimba.
In early September, we had to head down to Cincinnati Children’s for three days of tests on his whole body – cardiology, ophthalmology, neurology, pulminology,… we even met with the physical therapist and dietitian. We had a sleep study done (picture posted at right, taken just before he and I settled in for the night to watch the NFL opening night), and he had blood drawn. Many of the test results we have gotten back so far I don’t quite understand and hope to get some clarification this week while we’re in Minneapolis. What I do know is that he doesn’t have scoliosis, his heart is fine, his lungs are fine, and most of his blood levels are at or near normal ranges.
About this time we added some new drugs to his overall regimen or adjusted some levels. For instance, he’s getting less Polycose now, trying to level off his weight gain (he’s now gained 5 1/2 lbs since his tube was put it, only a gain of 1 1/2 lbs in the last month).
Since then he’s had some really good days at school, his “episodes” are slightly more under control, and we’ve upped the dose of miglustat to the point that we’re now at the full “therapeutic” dose of 300mg per day. We’ve also begun giving him a B-Complex supplement.
That pretty much brings us pretty much up to today — or, at least, yesterday. We’re currently back in Minneapolis for another week of testing and checkups. We had a pretty good flight, with no major issues aside from a couple of episodes.
He’s been through a lot — early July week here in Minnesota, including the 30+-hour EEG; early August getting a feeding tube after really having a hard time eating anything but still needing his medicine; early September taking three days and having another round of tests as Cincinnati Children’s really tries to chart his progress (or regress) and how it relates to his disease; and now early October and more tests here.
I really am proud of him, and proud to be his daddy.