I was all set to tell you all about the VNS and where we are with that three weeks from surgery. I wanted to include pictures of his scars (which have healed beautifully, by the way) and I also wanted to include pictures of what would have been his appointment tomorrow. This is the appointment we have with a neurologist so they can increase the power of the VNS. We're supposed to do this every two weeks until we are comfortable with the level. It's a really cool appointment and makes me feel like Christian is all space-agey with all the beep-beep-bop-boop-beep's as they reprogram the device.
But, alas, the doctor is sick. So we have to wait until next Friday to increase. Other than that, as far as the VNS is concerned, there isn't really anything to report. I haven't yet seen a reduction in jerks or seizure activity. In fact, I think I've seen more, which could be because this seems to be how Christian reacts to anything new. I'm willing to give it some time, though.
As far as everything else goes with Christian, he's doing pretty well! He returned to school and because of teacher conferences this week he went to school three days in a row. Today he didn't go to school but he was pretty whiney all day long and I couldn't figure it out. During therapy he settled down and paid some attention to what we were doing with him. It was then that I figured that he's so used to going to school and all the action that goes down there that he's probably bored with his ol' mom. After speech therapy he went right back to being whiney again.
Speaking of speech therapy, in addition to all of the therapy he gets at school, we have a new speech therapist! And she brings new ideas to the table! Yay for new ideas! In order to work him up to a possible communication device in the future, she worked with Christian on choices. She held up pictures of Lola, Gabe, and I (we couldn't find a big enough picture of Daddy) and then she would hold two pictures side by side and ask Christian to look at one of them. Christian did pretty well for his first time and actually participated in the activity. It's easier for him to process 2D images, it seems, so this activity wasn't too difficult for him. We also tried it with food choices. So we offered him choices between a lime, a pear, and water. He wasn't as definite with his visual choices, but he definitely physically responded the most with the lime. And who wouldn't? Limes are great.
In school Christian was able to join the other special preschool class, which is full of kids Christian's age. Currently, he is in a classroom with kids that are older than he is so this was just to get him exposed to his peers. And he did great! He tolerated it just fine and the OT said he was really tuning in and listening to the kids and their giggling. He went to the library and music with them and it's looking like it might not be a bad idea to look at the option of the other preschool class for Christian in the near future. We have a meeting with the powers that be about maybe transitioning him (because that is the ultimate goal) to the regular special needs preschool program. Apparently, he's not supposed to be double dipping without proper okay so we need to see what has to be done so that he can visit the other class with no problems. (Insert eye roll.) It requires paper work or a signature or something.
And we have the 5K race coming up with MyTeam Triumph this Saturday! We are all doing it as a family. Christian will be the "captain" and Manny, Gabe, and I will be his "angles." Lola will be tagging along, as well. I don't know if I'm physically ready to run the whole thing, but I'm sure going to try. We're just going to focus on having fun, though, and crossing that finish line!
To donate please visit this link! http://www.active.com/donate/myteamtriumph/christiansjourney
Donations are used to fund equipment needed so that those who could not normally participate in a race, can now do so!
And just for good measure...my favorite pictures of the week that I already posted! I love these pictures so much I just may post them on everything!
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1 comment:
Preschool sounds like it's working out great Shauna! I hope his seizure activity slows down, i'm sorry they couldn't fit you in again until NEXT friday! Ugh!
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