Sunday, December 14, 2014

It seems these days I don't have a ton of time to post here. Every time I start writing I get Interrupted then when I come back to it things have changed so much that I need to start over. I used to have this blog as a way to look back at my family over the years and enjoys reading and scrolling through the pictures of my family history. Now, it seems like I just post a quick update on Jonah when I can. Which is still important but I do miss looking back on the whole family.

Here's my Jonah update the best as it can be because it will probably change tomorrow. Since the hospital we increased Depakote which seemed to do nothing. We increased the ratio of the diet which seemed to help decrease the intensity of the nightly tonic seizures most of the time. Also, he wasn't having any saying activity which again is fairly normal. The third change we have made is stretching IVIg treatment from every 2 weeks to every 3 weeks. I'm not sure if that has made a difference or not. 4AM this morning he had a small grand mal seizure and last night he had a tonic seizure followed by an absent seizure while he was awake. He also had a grand mal seizure Monday in his sleep. So is that from the increase length between infusions? I don't know. It is so hard to tell. I know Justin would say for sure it is.  

Jonah was back down to the Mayo on Thursday for his infusion. He did great as usual. The day of his infusion he had a daytime tonic and absent. He's actually had a couple daytime seizures sprinkled here and there. After the IVIg infusion it can take a couple days for peek effectiveness.

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