Gideon had a better day today than yesterday. No big seizures, - TopicsExpress

Gideon had a better day today than yesterday. No big seizures, still lots n lots of small ones. He spent most of the day sleeping as his body is fatigued. He was awake several times today just for short periods with long naps. When he awoke from his afternoon nap today his word was ow, he said it twice. He is in constant pain even moaning in his sleep. He is getting pain meds around the clock to try as we try to keep him comfortable. For the most part, pain was managed well today. He can no longer hold his upper body up when trying to crawl so his face hits the bed. This is frustrating him as he wants to move about. So, we are holding him up so he can move about some. He can no longer stand as his legs buckle even when we are supporting him. Talked with OHSU peds NEURO today. There is still not a plan yet on how to handle days like yesterday. The pediatrician visits tomorrow. Hopefully well have a plan tomorrow.

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