Friday, September 12, 2014

Jonah's appointment went pretty good today. We didn't get the ok to wean any pills right now which was kind of a bummer. Plus, they are increasing his ketogenic ratio so he will be getting even more heavy whipping cream with each meal. 

The infusion went pretty good. He had a couple tonics during it and actually two quick myos during his appointment (while awake) but over all he did great getting the IV in and what not. 

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.

Saturday, September 6, 2014

18 days and counting of seizure free days while awake!! Thank you Jesus! He continues to have tonics after falling asleep and a couple nights ago he had a 1 minute tonic clonic in his sleep which is always scary.