Maria on her new bike
I mentioned this to another medical professional, who said another person similar to Maria was also referred to this physiatrist and he was kind of an ass. Told them their AFOs were the wrong kind, what they’d been doing was wrong, etc. But as long as I know this going in, perhaps it won’t be as bad? We have dropped doctors and therapists because they’re too ornery, but we’re willing to give it a shot.
He also mentioned that we may want to consider a baclofen pump at some point for Maria’s stiffness. It’s something implanted in her skin that puts drugs in her spinal fluid – nice, huh? It has troublesome side effects, including floppiness (not his words, I forget how he put it) in the trunk — just what she does not need. www.drugs.com says baclofen can cause side effects that can impair your thinking or reactions (among other things). I’m not too keen on all that. I think Maria’s bike will do more for her than a pump continuously putting drugs in her body.
The neurosurgeon also said her MRI looks good still and that it’s not possible to know how much the shunt is draining and how much Maria’s brain is draining on its own. So we’ll just leave well enough alone and tackle that problem if it arises. Since she’s growing so much, he wants an xray series (where they xray the entire shunt) to see if the tubing is long enough still. So, all-in-all, I guess the appointment was pretty good.
Maria has ridden her bike 3 or 4 times, and seems to like it every time! She sits up straight, doesn’t seem to get tired, we take her for longer bike rides each time. We’ve all got faith that this bike is the thing that will help her the most!
Bella’s doing well (our new kitten). She’s very sweet and loves Maria and Maria loves her. Maria has grabbed her tail a couple times and Bella only reacted the 1st time. We’re still very careful and watch them every minute, but fortunately they do seem like fast friends!! (and Kijana, our other cat, is finally getting used to her).
Tomorrow Maria’s going back to school, after being out for about 2 weeks (sick one week and in NM last week–it was freezing there, I went for work and Maria and Manolis went for fun. we got a few small visits with Grandpa and Grandma, which was nice). Her breathing, for some reason, hasn’t been good today. We used her inhaler this evening for the 1st time in months. I’m not sure what’s going on, but it doesn’t seem like it’s because of aspiration, it seems deeper in her lungs than that. I’ll send her teachers an email and they do a great job of keeping their eye on her and calling me if they have any concerns.