I am a blog slacker.
I guess I should update you all about Emily huh?
We have had lots going on here lately. Just too much some times to actually set down and write it all out.
She did great after we began her phenobarb wean! She had several days with no seizures and we saw so much more of her personality too.
Unfortunately things got really bad on Saturday afternoon. Joe went to a football game and Emily I were hanging out at the house and she began to have a few very small seizures. All of the sudden she had a tonic/clonic (grand mal) seizure.
Emily has probably had 5 or 6 ever and on Saturday she began to cluster them. I was more terrified in that moment than I ever have been. They were not lasting long, less than a minute each, but were just coming back to back. I gave her diastat (rectal valium) and it did nothing! I was alone and was trying to get through to the on-call neurologist but there was some miscommunication with the answering service so I could not get a hold of them quickly.
I called an ambulance because at this point she had over 10. She was coming back in between them but the diastat should have calmed things down.
Now I live in a very small town and half of the town are volunteer first responders and I am pretty sure most of them came. I am thankful to have so many people to help but sometimes it's just too much.
So in the ER after a whopping dose of phenobarb and 6 attempts at an IV she was admitted just for 20 hours. Our best time ever!
So back to the drawing board with the phenobarb wean. We will just wait and take it much slower this time.
Emily's seizures come and go. She just had over 48 hours without any and then she had 15 today. There is not rhyme or reason and definitely not a pattern.
We do know now that she responds with a less is more approach when it comes to medicine.
Her sleep is still pretty sporadic but we did sleep 6 1/2 hours last night which was great! I am praying for another good night of sleep tonight.
This is the smile I got when we came home from the hospital.