Today marked day 30 in September and unfortunately Cailyn had only one seizure free day the entire month. That does get discouraging.
A few good things have been happening. I got Cailyn to eat solids again. She gets too upset in the high chair and can't swallow right since her head control is so bad, so if I hold her like I would for a bottle she'll eat great. She's had pears, bananas, applesauce and sweet potatos. After 3 weeks of no food its good to be getting stuff back into her.
Also the physical therapist measured her head again to check out the flat part. Two months ago when we measured it last time she scored an 11 and this time she was at a 5 --- 15 is needs a helmet. So we'll keep using the positioner and having her sleep on one side and hopefully both sides will even out.
Still waiting to find out what tests the genetist is going to want to do. He wants to see what her blood test shows this week to see where he wants to go with things. It could include another spinal tap and maybe blood tests for Mommy and Daddy too.
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