Thursday, September 16, 2010


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.


  1. Sorry to hear of that scary scary day!! I hope you guys find what works best for sweet Emily soon. I am glad you are having some days without seizures though!! Kiss her for us :) Love and prayers to you all :)

  2. I know how scary that must have been for you! Ella's first gran mal happened when I was alone too! I was actually driving her to the peds office because she was sick and my two older kids were with me and she started convulsing in her car seat! It was horrible! I am so sorry you had to go through that but I am glad you didn't have to stay at the hospital long!! Take care of yourself and that sweet little girl :))

  3. I know you were absolutely panicked! I would be. There is no feeling more helpless than that of a mother who is trying to help her child. God Bless Your Heart! I KNOW that God will heal her, hang in there! I love you all, Grandma Mary

  4. That smile must heal your weary heart!

    God Bless you guys!!!

  5. I hate when I am home alone and my Emily has grand mals. There is no more helpless feeling than that! I am sorry you had to go through this and the Diastat didn't help. That is always my fear. :(

    The smile at the bottom of the post though ... she's beautiful!