Here are some pics of her from the Hospital. I think her head cloth makes her look the girl with the pearl earring, sans earring.
The good news is, it wasn’t seizure activity. The bad news is, that it is probably an issue with her eye muscles which we will be exploring with her ophthalmologist. More fun. Glad we are catching it early and so, so, so glad it’s not seizures or a shunt malfunction – both much worse things.
We came home and Ellie took a two-hour nap on Dada on the beloved couch and then we popped her in the also beloved B.A.T.H. Bath. She was delighted and a happy girl having Mama’s and Dada’s full and lavish attention. Her eye is still a little wonky at times but just knowing it’s not her brain seizing or getting injured due to hydrocephalus makes it a lot easier to handle. I worry for her vision – she is so visual. Will keep you posted.
4 comments:
Glad to hear your home. Praying that Ellie's vision isn't affected and this is easily assimilated into a "new normal" if it needs to be. Love, Emma
Thanks Emma. I hope so too.
We will see. ;-)
Kathryn, this is a really good post. It is true that decisions such as life support and treatment for preemies is entirely about disability prejudices. But if you mention this out loud to anyone, they immediately deny it and the discussion stops there.
I have to say that I really admire and appreciate parents of disabled kids. You all had to come at this from the mainstream, yet you all love and advocate for your kids so much and the transformation is just admirable. I hope that doesn't sound condescending or anything. It just must be a whole different ballgame to be a parent of a PWD than a PWD. Its easier to take crap when you know its just aimed at you. When it is aimed at your kid, it must be heartbreaking.
I'm getting caught up here, I didn't know Ellie was in the hospital. I'm glad all seems to be okay (except for the eye thing) and she is being such a trooper. Hope it all goes well for you both.
Kathryn,
I missed this post due to my failure to scroll. Glad there wasn't anything on the EEG but I have my fingers crossed that Ellie's eyes are okay.
We are off for our next ABR sessions so I'm going to be quiet for a couple of weeks. The blog will keep updating while I'm gone though (i've worked out how to preset posts to publish later).
Look after yourself and your beautiful family.
Love,
Jacqui
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