We’ve (I’ve) gotten a little lazy about the blog lately…
Just quick update before I forget. Maria got botox injections in her legs on Thursday. This should loosen up the muscles and give her more control. It should also slow down the deformation of her hips. She’ll have to repeat them every 3-6 months. They actually have to put her under full anesthesia because they are so painful – 12 injections at once!
Monday she starts VitalStim. That’s the procedure where they administer minor electric jolts to her throat muscles while she is drinking to strengthen the muscles and train them to operate correctly. Cathy was able to find someone to do this at home so we don’t have hours of driving. It’s 4 days a week for at least 5 weeks. We are suspending most of her other therapies in this time, though it’s late enough in the day that we could resume them depending on how Maria reacts.
VitalStim has something like a 96% success rate in improving swallowing. I think Maria’s swallow has been getting worse lately and I’m glad we are going to be doing this. If she can get her swallow under control maybe she’ll start eating more. This week she again weighed in at 30 pounds including shoes and coat.
Maria’s seizures are back. They had been pretty much gone for a while but now she’s regularly getting a half-dozen a day. Last weekend Cathy took her first day off in weeks, leaving Maria with Manolis. Maria of course had a massive cluster of seizures (around 35 in a couple of hours) so Manolis was freaking out. Cathy talked him through giving Maria her emergency medicine and it calmed things down.
So it’s been the usual fun stuff around here.
I’m going to be moving Maria’s site to another server tomorrow. It *should* be completely invisible to everyone but you know how that goes. If things get wonky, just wait and it should clear up in a few hours.