Monday, July 26, 2010

The past week

After my last blog post we had to take Emily to the hospital. It ended up being a short stay, just overnight. She ended up having over 100 seizures within that 24 hour time. We tried everything we could to stay home because the more she is in the hospital the more germs we expose her to.

We got some more of the testing back from Cleveland and all it showed was a vitamin D deficiency. More normal genetics. We just had another genetic test sent out and that will take several weeks.

We are currently trying to stitch her from the ketogenic formula to ketogenic meals. We are changing it slowly so her body can adjust to actual food. So she is getting one of her five meals in food and she is eating about half of that by mouth. She really does not like the meat baby food ( i don't blame her) so we are looking into different protein sources.

She is still having many seizures a day. I think it may be her teeth, she wants to bite and chew on anything that gets close to her face. We are giving her oragel swab and Tylenol pretty often and it helps a little bit.

So that is pretty much it. She still is not sleeping at night. We did get our nurse back (yay!)

Here is a video (if it works) turn up the volume, Emily is laughing in her sleep. Whenever she hears me talk she starts laughing again. It is the cutest laugh!!

haha Daddy! I took your chair!


  1. That video is the most adorable thing I've ever seen! I have to come and see and squeeze her. I am having grandma withdrawals. Her hair is growing back so thick too! The seizures will stop again. Hang in there. Emmy loves her mommy and daddy SOOOO MUCH!

  2. Emily, you took my chair! AND the remote?!

    It's okay though. I love you too much to worry about that. Besides, it's okay if you want to be like Daddy! ;)

  3. that little laugh is just the sweetest...

    Emily in Joe's chair is awesome!!! :)

    YIPEE for getting your nurse back! (Stupid insurance... blah!)

  4. What a cute video. Glad you are back home. I think we came home the day you went in. I hope Emily starts to feel better soon. Oh and she looks so cute sitting in that chair :)

  5. I'm so glad you got your nurse back I can't imagine the relief that is for you. What meat are you trying? Did you make your own or the store bought kind. I couldn't even stand to open the jars it made me gag let alone feed it to one of the kids!!

  6. That video was just what I needed today.

  7. How is Emily doing?