We did it! We now have a great big five year old! He slept nearly the whole day on his birthday. He only would wake up for his birthday calls. Three months ago, we would have spent the day in the ED with an IV because he was so tired he wouldn't eat. But since we have the G-tube, we just fed him and let him sleep it off.
He's growing more and more each day. I've never seen his torso, where I couldn't see his ribs. He's putting on weight. And I'm feeling it in my back. I'll be glad to fix up our new house with some better positioning spots for him so it isn't so difficult to move him around.
We move into our new house on Saturday. Max will have his own room again, and his own bathroom with a tub! He hasn't got to splash around in quite a while. I hope he still likes it...the stinker needs a good soak!
We went in for an AAC Speech evaluation last week. He's still able to communicate with his Fl4sh talker, but it is a little slow for his needs. So we're looking into getting him the TANGO! It has a lot more growing room for him. And he can use his switch to activate it.
I guess that's the run-down for now. It's 15 minutes after midnight and he has awakened with a runny nose...off to make it all better.
Phew ... I just finishing reading your post below ....
Moving. Touching. Mindblowing.
Your Max is quite some cool dood!
Was it Sabril they gave him (you don't mention the name in your post)? My daughter Abigail takes Sabril twice a day, and has never had a seizure since. I wasn't told it makes you blind, but there was a risk it could kill side vision only. Abigail has come on incredibly since she's been on Sabril.
I intend to continue to watch Max's development! He's quite the warrior!!!
The Bernard Bunch
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