We made last minute plans to visit with friends Friday night. Well, "visit" was more going to evaluate their daughter's wheelchair as we ordered the same for Sadie and trying to figure out our future transportation dilemma. But, and out is and out and any excuse to see friends....I was excited.
Early in the evening I watched Sadie do this really weird "twitch" with her eyes. I have seen this once before as did Nick. I video taped it to message to the same friend that we were meeting with to get her opinion. Sadie does alot of things that sometimes we wonder if it is seizure activity...but it is just hard to tell.
Here is the video
Later although her eyes were twitching slightly, she seemed a bit sleepy, so we layed her on her blanket and boppy pillow and went and ate dinner with the rest of the family.
After dinner we found her laying quietly, soaking wet from her own drool, in a total "Tonic Clonic" (these are what they now call Grand Mal) seizure.
My heart. My poor baby girl. I now know in reality that she started having her seizure hours prior. I know that it is not my fault for not knowing...but the guilty mom part has yet to forgive myself.
Thankfully we have a medication called Diastat in the house. This is basically a rectal Valium that is suppose to abort the seizure. You give one dose and if after 5 minutes it does not stop, you give a second dose. Thankfully, Sadie's stopped after the first. We were able to distract the other kiddos with things we needed them to do, to avoid the stress on them of Sadie going thru this. I think it is just as hard on Ryleigh as it is myself.
After seizures and that medication, she slept. I just snuggled and prayed the rest of the evening, while "watching" Ice Age with the rest of the family.
To try to give myself "peace of mind" I put Sadie in bed with me, so I would know if she started to seize again.
My biggest fears with seizures...what if she does not come back as "herself"? Worse, what if this is the one that takes her from us forever? You feel completely helpless when your child does this. I have never experienced a fear like this before.
What I really hate is the unknown of what caused this. Sadie's prior seizures generally have been able to be linked to something...and illness, vaccines, etc. This...nothing. No known cause. When will the next one come?
I have found that I loath nothing else in life more than these seizures. I feel completely paralyzed by them. I hate that Sadie has to go thru this. I hate it. I hate that we have no idea of knowing when or why. I hate that we just got over spending 7 days, 6 nights in the hospital and last night was the night.
I think I referred to myself as having self-diagnosed PTSD following seizures. This is on a high level again today.
Please pray for our Princess and that she may continue to thrive as she has....but someday do it seizure free!
Please pray for the rest of the family and that we can live not fearing these horrible seizures!
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