Wednesday, December 28, 2011
Living in seizure central.
Sometimes that's exactly what our lives feel like dealing with seizures constantly.Different kinds,different types and all the time.Sometimes it feels like you're on a high speed train going toward destruction and you just want off.
Other times it feels like you are on a never ending, perpetual roller coaster.
With all of it's ups
Twists and turns.
Other times it's more like a monotonous Merry-Go-Round.
You just find yourself screaming, stop! I want off.
It's enough to make you want to pull the hair out of your head.
Yesterday was another one of those unpleasant times.Ariel had been seizurey all day.The VNS is stopping her from convulsing so much and for that I'm thankful,but she still has times where she is very out of it.If you click on this picture you can see a close up of her eyes.That's how you tell when she's seizurey,not to mention she gets very slurred in her speech,so I was dealing with her and finally got her to sleep.I went to bed and at 4:30 in the morning heard that horrible all to familiar moan.
We ran to the room and found Daniel convulsing and blue.After he finally stopped after giving him oxygen and Diastat we pulled the car up to take him to the E.R. because he had dislocated his shoulder yet again.This is more than 30 dislocations.Thankfully he went in the bathroom and popped it back in himself.This is a new frightening set of circumstances in that he was asleep and the danger for him is much greater,due to the risk of suffocation.
We were able to go back to bed,but frustrated that another med, another treatment had failed our son.We have very few options left.Please pray that we can get some control and get some more answers as far as this syndrome the kids have.
Thank you for your prayers.