On May 10, 2006, at only 6 months old, Sophie was diagnosed with Infantile Spasms...a RARE and CATASTROPHIC form of epilepsy. She continues to battle this disorder on a daily basis. Only after she had the majority of her left hemisphere of her brain removed (on May 29, 2009) has she had a relief in seizures (though she continues to show spiking in her EEG). She has shown much improvement in development since the surgery.
Sunday, December 11, 2011
One day at a time...
The most important thing... Sophie is seizure-free!!!
I lost focus of that a few times in the last couple of days. She surprised us coming out of surgery on Friday. She was so awake and alert and thirsty. We tried to take things slowly to make sure she did not get sick. And she did not. She was a little swollen which was to be expected. She was doing amazingly well, all things considered. So I got my hopes up high that she was going to recover quickly this time around. She was already sitting up on her own, talking and drinking. I felt like we were already coasting. She showed a slight weakness on the right side of her body but I know she will regain most (if not all) of it with therapy so I was not all that concerned. She also did not seem to be in any pain. Things were beyond all expectations.
But Saturday and Sunday were different. She has been sleeping almost nonstop. Though she was awake but not interactive for a period of time this afternoon. She refuses to take a sip of anything and continues to vomit or dry heave almost every time she sits up. But those things are minor and she will come around.
I just need to be patient and focus on the big picture.
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4 comments:
So glad to hear she's been seizure free :)
Sleeping off the surgery is preferable to Henry's scream-athon approach! We even rang the hospital to check if we should bring him back in and they said no, they often have a bad come down after so long under GA.
Oh thanks for the warning!
Hope she wakes up today, eats & drinks and generally makes merry :)
Katy x
Patience is hard when you just want your baby to feel better and be back to their happy selves. I am so so happy she is seizure free. That is just wonderful.
You already know that every child heals differently. I already know that even if I tell you Trevy went through what I am convinced was a "depression" which sounds SO much like Sophie right now...it may help a little. But you're the one watching your baby suffer right now...so at the end of the day...the help is temporary. Because Sophie is Sophie not Trevy. I can't believe I still remember all those emotions I felt sitting by him! The best thing we did was convince them to let us take him home. I mean, once we'd had scans to rule out pressure and labs to make sure he was therapeutic. Also...he hadn't thrown up in 12 hours and was taking some things by mouth. Shhhhh...don't tell anyone there...but he chucked on the way home too AND I forgot to pack the Diastat! Which I realized when we were in the middle of no-where PA!
I wish I could just snuggle her and rub her hair and make it all better right this minute. I hate that healing moves at a snail's pace...
XO
...danielle
glad to see this update :)
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