Friday, September 24, 2010

love

It has been pretty rough around here the past few days. Emily is seizing a lot in spite of lots of rescue meds.

There has been no changes at all with meds or her diet. She is still on the ketogenic diet and I have limited her food choices to help control it as much as possible.
We check her blood sugar and ketones and they are the same as they have been for weeks. I just don't get it.
There is a list of things you think through when her seizures flair up. Is she sick (cold, temp, runny nose), teething, rash, infection, pain, constipation, diarrhea I drive myself nuts trying to figure it out. By the way she has none of those.

The crazy thing is she will have a huge seizure and then look at me and smile. It is like she is reassuring me.

The other night Joe was saying goodnight to her and she just smiled and stared at him. She adores her daddy.




This is what I woke up to yesterday morning. This is after a horrible night of seizures too. She woke up so happy.


She is amazing.

6 comments:

  1. she is an amazing angel! fruit doesnt fall far from the tree!! you and Joe are so dedicated to emily and each other..... its just beautiful

    ReplyDelete
  2. God Bless her Erica...those smiles are beautiful... I pray that some relief can be found for the seizures soon and that her little brain can rest & grow. :) I think & pray for you guys daily.

    ReplyDelete
  3. Those smiles just melt your heart! She is an amazing little girl :) You are so blessed.

    ReplyDelete
  4. She smiles at you after a seizure as if to tell you "see mom, I'm ok." I think she wants to reassure you and Joe too. She is very blessed to have you and Joe as parents and you and Joe are very blessed to have her. She sure does love her mommy and daddy! We love you all very very much.
    Grandma and Grandpa Johnson

    ReplyDelete
  5. She is amazing! I love the photos of her with Daddy, there is something spectacular about a girl and her dad. :)

    ReplyDelete