Potpourri blog time! A little bit of everything...
About two weeks ago Christian started on a medication called Prednisolone (Prednizone). It's a steroid. There's been some efficacy of paring this steroid with ACTH and/or Vigabatrin for seizures. Christian doesn't have as many jerks as he used to but he still has them, especially coming out of sleep, which is typical. So we're looking for optimal seizure control, the neuro suggested this steroid and said we'll know quickly whether it helps or not, so I said what the heck. What about the Ketogenic Diet you ask? Well, it's in the works but the momentum has slowed because it seems nobody has a lot of experience with it. I'm getting a little run around, but nothing new there.
The results of the steroid as far as seizures are concerned...meh. I'm not sure either way. There were some weird things going on and some shifting and confusion and, "...was that one?"
But the other side effects were awesome! Christian was stronger, much stronger. I saw him more awake and more cognitively aware then I'd ever seen him since the accident. This medicine woke him up. He ate by mouth better, he looked clearer and more aware, he was more vocal, I mean this stuff was great! But, alas, the neuro said we couldn't keep him on it forever so we should start tapering off since the main reason he was on it was for seizure control. But I don't wanna stop! (Pouting). We've been tapering since Friday and the last two days I've seen a difference in him. I've seen more jerks and more lethargy so now I'm confused. I'm thinking of continuing with the higher dosage until I can talk to the neuro again about maybe keeping him on a steroid that he can stay on. I just love the results! So to be continued...
Shhhh. Don't say it out loud. I have to report that Christian has not even attempted to throw up for two weeks. Not one single time. This is such a big deal. Even when Christian has gone a week or so in the past without throwing up, there were always attempts here and there. But he has not thrown up at all. Because of this I've been able to increase his caloric intake pretty close to where it's supposed to be. Fingers crossed and prayers it stays this way. But it seems that if you write something like this down, it lets the universe know and then the universe says, "No, sir!" and Christian starts throwing up again. So let's just keep this on the down low. Mmkay?
Gabe and Christian are celebrating birthdays this week! Gabe will be 12-teen on the 29th and Christian will be the big 2 on the 1st of August. It all just happens in the blink of an eye. And then they're big!
Speaking of Christian turning two, this means that in a year he'll be eligible for preschool and I'm super excited that the preschool for our district is really good! They have normal kids and special needs kids and they're equipped for kids like Christian. I'm so excited for him. So that means that this time next year we'll be getting ready to send him to preschool where they'll have PT and OT and everything he needs. This mama is a happy mama.
Oh yeah, I almost forgot...botox! Christian got some last Friday and now he's Mr. Noodle Legs. He got two injections in each quadriceps (front of thighs) and two injections in each adductor (inside of thighs). It takes a few days to set in but bending his legs now takes very little effort, he doesn't fight knee stretching, and he doesn't automatically extend when a position is released. So pretty much all good things. Mama likey.
The local news just did a story on ISR and I'm trying to get a hold of the news clip to post the video so you all can see what it's about. I've taken video of Lola and we're just finalizing approval of the video. I can't wait to post and share this program with you guys. I love ISR and I'm waiting to sing it's praises until I'm able to post video.
There are a few more things in the works and I'm pretty sure I said that last time or the time before, but I'll be sharing over the next week or so.
Unicorn frappuccino for my unicorn
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