Wednesday, May 1, 2013

Snuggly girl & weird eye movements

Reagan slept all night and woke up around 6am (thank goodness for the night nurse)! She was a little groggy this morning (probably from waking up so early, but she never dozed off. She had speech, speech from the school system, and "school" today and she did well for them all. She was very mellow again today. When being held she was completely still and calm, in her chair she was still a little kicky and playing with her hair. Tonight I held her and she was such a snuggly princess. Right before the night nurse got here I thought I noticed her doing something weird with her eyes. Then about 45min later, when the nurse was holding her, I think she was doing it again. It's something I've seen on occasion. Where she's looking down and kind of fixes her eyes in one direction and when/if you can get her open her eyes, she opens them in this wide crazy bulging way. It's hard to explain. It looks seizure-ish to me (then again, other things have looked seizure-ish to me but were disproven via EEG, so who knows). Hopefully it's nothing. Just some weird neurologic/opthalmologic quirk. Hopefully. That reminds me...we never got her lab results back on her Banzel levels. She has grown over the years and we still have never increased her dose. It's something we don't want to increase if we don't have to (obviously), but if she's starting to have breakthrough seizures, then we definitely need to increase it. But again, hopefully it's nothing. Speaking of seizures...please pray for Grayson tonight. He was taken to the ER last night with high fevers and a bad seizure. They still can't get his fevers down and tonight he's been moved to the ICU. Lots of prayers needed for him and his family!

1 comment:

Elizabeth said...

Thank you for the prayers- we know God worked through them! Your sweet girl is always in my thoughts and prayers/ glad it was a good day and hope you can get the seizure thing figured out!