Thursday, November 6, 2014

We are back down at the Mayo and hospital again to meet with his doctors and so he can get his infusion.

Jonah has been doing fairly well. He's not seizure free but with Doose Syndrome his seizure control is great compared to what it could be and has been been. 

He still continues to have grand mal (tonic clonic) seizures in his sleep. He actually just had one this morning. :( He also is still having tonics nearly every time he falls asleep. These last couple weeks he has also had increased daytime activity. 

Jonah has been on the increased ratio now for over a month. We really haven't seen a lot of difference in seizure control with the increased ratio. We'll see what his doctor has to say about moving forward. 

If it is on your heart to help monetarily we have started an online fundraiser for Jonah to help cover his past and ongoing medical bills, medications, special equipment, dental work due to medications... 
http://www.giveforward.com/fundraisers?query=Jonah+Kittelson-burke or we can except donations through PayPal on this blog. He money goes directly into an account set up for Jonah and the expenses for his care.



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