Tuesday, September 7, 2010

Not too bad

Things here are going ok. Emily had over 2 1/2 days with no seizures, just spasms, but they returned.
They are much much fewer and seem to be weaker.

Emily's seizures are not always what they seem. Not all of the things that look like seizures show up as seizure activity on an eeg. There are subtle differences that we are learning over time. Most of the time when she has an actual seizure she is dazed and very quite and you can't bring her out of it. The other thing she does that looks like seizure activity can be stopped by blowing in her face or doing something else to get her attention and she also does not get dazed and still will interact with us.

She is starting to hold her head up pretty consistently with the exception of seizures and when she is sleepy. She does not require max assist to set up, she still requires assistance but I think that within a few months she may be pretty close to setting by herself.

She is getting stronger everyday and her vision has improved tremendously. Some days are better than others but it is amazing to see her seeing things, she looks with this amazement and I love it!!

We got to go to church as a family for the first time in months. It was so nice to see everyone and Emily did great. She got overstimulated with worship music but we set in the front row ( you know the closer to the front the closer to God right? haha) so I think next time I will keep her out until the last song is on and slowly get her used to it. After church our friend Rebecca took us out for lunch and Emily still did great. I was nervous because she has been quite vocal lately but she sat quickly and watched football on tv.

Speaking of football, we love college football, specifically Louisville Cardinals. Eh, not the best team and they did not beat the rival team, Kentucky, but we still love them.

 We got Emily ready for the game!

On the sleep front: she is still not sleeping much at night, hence the blog post at 2:30am. Sucks but we have a nurse 4 days a week so I sleep then. I literally can sleep anytime of the day. If you knew me prior to having Emily you know that I LOVED sleep. I looked forward to sleep. I bought a 1200 thread count sheet to make my sleep better.  Oh well she is worth it.

It was so nice to have Joe home for a 3 day weekend. We got real spoiled and last night I was putting Emily in her pj's and Joe was kissing her good night and she almost started crying because he was leaving the room. It was the sweetest thing. She loves her daddy. I am so thankful Joe is so helpful, I know a lot of dads that are not or they work out of state or they just are not around. It takes a very strong women to raise a child with so many needs alone. I do not take a single moment for granted.

Hope you all had a wonderful weekend.


  1. AWESOME! Things are improving. Slowly, but improving. Next thing you know, she will be sitting up all by herself! She looks adorable in her card outfit. Kisses from grandma Emmy!
    Grandma Mary

  2. So enjoyed being able to spend some time with you guys!!!

    I think I'm just going to nick-name Emily "The Party Girl" since she likes to stay up during the night... fitting, right?

  3. LOVE the picture! We all know she is one tough cookie, but that picture says it all! Like she is saying, "You want a piece of this?!!"

  4. Glad to hear she is improving and making strides in spite of spasms.

    LOVE the pic!