Sunday, March 14, 2010

bad news

I have been holding off blogging about this just because it is hard to type.
We got the results of Emily's follow up MRI of her brain.
Compared to the MRI in Dec. her brain has suffered mild to moderate atrophy, which means it has shrunk.

We are getting a 2ND opinion within a month at the Cleavland clinic.

Another thing that could have happened is that her brain just did not grow with her skull, which is what we were hoping.

We were just so taken aback because she has actually made PROGRESS the past few days. She rolled to one side and brought her hands together (like praying). She is smiling more and laughing appropriately. She is even making more eye contact too.

So needless to say we are pretty upset with this news.
I am holding out hope though, this is one doctors opinion, and as we all now Emily is a mystery so we can't compare her to anyone else.

She started the ketogentic diet and tonight it seems to be kicking in. We have to test her blood sugar and check for keytones in her urine. The goal is to get her blood sugar somewhere in the 70's (normal is over 100) today she got done in the 80's. She is already having moderate keytones in her urine too.
We are only 2 days into the diet so I have not seen a huge improvement in her spasms. Yesterday was a very bad day for spasms but today they are not nearly as long, so maybe that is the diet kicking in.

So please pray for Emily and us. This is so hard to go through.

I just wished we had answers. None of her genetics are saying anything. We are currently waiting for the 3rd round to come back.

I love her so much. She is all we ever wanted.

One last thing. Emily's daddy ,Joe, has started blogging about his princess. Go check it out.


  1. Hang in there, kids. We are gonna get through this. We have to put our faith and trust in our Lord. Always remember, He is with us, even though we dont always see Him.
    Love you all.
    MaMaw Mary and PaPaw Jeff Johnson

  2. I kept praying for a miracle for Emily. Yesterday at Church, I realized that I have to put it all in God's hands. I will keep praying for her and for you and Joe. Praying that God's will be done. Praying that if it is his will, Emily will be cured. If you need anything, let me know. Love you 3!
    Aunt Shirley