We are now at St Louis Children's for Delaney's video monitored EEG. A little background, she's been having seizures since March. They're pretty sure it's related to the nodules in her brain that they found in December. She started meds about 3 weeks ago and that's been going well but they really wanted this to get a long term view of what's going on in her little brain when these things happen.
Yesterday afternoon we left our other two girls and headed to great grandma's in Columbia. She lives half way between us and St Louis and since we needed to be here at 830 this morning we really didn't want to drive all 4+ hours here all at once and stayed the night with her. It was a great evening and Delaney loved it there. We even got her pic with grandma's little corner where Sandy and Grandpa's ashes are. It was very special. Here are some pics from last night.
Lounging in her new chair
Helping grandma in the kitchen
Posing with the Mizzou tiger
Visiting Grandpa and Sandy
We got up super early after a very long night (she would only sleep in grandpa's chair) and headed over to St Louis. We got here about 30 minutes early which was a good thing because once we got to her in her car seat we realized that she'd thrown up all over herself. She's never thrown up before so we thought maybe it was just car sickness. We got all checked in and in our room. Then they put the stuff on her head. It'll be there the whole time and we can't bathe her at all until it's off. The little monitor is wireless so the cords and monitor is in a little back pack. She really hates it but she's getting used to it.
Playing with her toys after it was all over
She hasn't been eating well for the last few days and we're just attributing it to the bladder infection and the antibiotic but then the threw up again this afternoon (a lot this time!) and we just couldn't ignore that. So now we think she has a tummy bug in addition to her bladder infection. UGH!
We didn't give her the seizure meds this morning since we were told that we'd most likely hold them while she was hooked up. Well by 1 this afternoon she was seizing again. Not big ones but the smaller jerky ones. She's had 6 of those since she's been here. All while sleeping. Let's hope they show something!! We're a little nervous about how the night will go but we will definitely keep you posted!!!
3 comments:
What a trooper she is. *hugs* Thinking of you guys tonight.
hugs to you and your family. little D is such a trooper. xoxo
How great that you get to go to grandma's. A perfect place to lay your head.
I'm sorry she's still fighting this infection and now adding insult to injury...ugh. She is such a sport though. Such a happy little person. I hope the seizures leave her alone until she's feeling better and can get her meds in her.
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