Thursday, September 11, 2014

Tomorrow we head back down to the Mayo for Jonah's infusion and 2 appointments. His fist appointment is at 9am, so it will be a long day.

I'm am so thankful that he continues to not have any seizures while awake. IVIG has been amazingly effective. 

I guess the down side or whatever you call it is that he does continue to have daily seizures at night. Even if most of them are just quick tonics after falling asleep that can't be great for him. 

Jonah is such a trooper. Every day he swallows 17 rather large pills, drinks over 150g of heavy whipping cream, watches his siblings eat food that he cannot have, gets poked with a lancer and every two weeks sits perfectly still as an IV gets put into his arm so he can have his IVIG for 4 hours. I'd say that's pretty good for a 4 year old. 
Jonah takes these every day. We hope to start weaning the blue/white ones tomorrow.

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