Sunday, August 15, 2010


So Emily has been sleeping A LOT lately but the past couple days it seems she is much more awake.

Yesterday she was definitely awake more than she has been in a long time.
It was nice to see her not so drugged up.

She has also been babbling a lot more too. She is making new sounds and using her tongue more. She "talks" a lot if we are having a conversation, it's like she knows we are not giving her all of our attention. :)

I don't know what parent would be happy about this next story but I was.
Emily almost (keyword almost) fell off the couch! I know this is wrong to be happy but dang it it means she is getting at least slightly stronger right ? When Emily is laying on her boppy on the couch she uses her stomach muscles to try and pull her self up. More often than not she does not go anywhere but this time I was not right next to her and Courtney (her nurse) took some things to the kitchen. Luckily I saw her and got to her in time. No harm no foul.

Seizure-wise, she is still having them. On the bright side she is not clustering them as much as she used to. Normally when she would start having seizures they would come in clusters of up to 100. It takes a lot of meds and time to stop them. The past couple days though (after med change) I have not had to give her any rescue meds because they are stopping on their own.

Emily is also sleeping SO MUCH better at night. Some night are better than others but over half of the week I am getting at least 6-7 hours of sleep. I am actually having to wake her up for breakfast and therapy some mornings.

It has been super hot here lately so we have just been staying inside, we cannot wait for fall so I can get her outside more!

I will leave you with this picture I took the other day. She fell asleep for a nap so sweetly I had to take it!


  1. I hope that her health will continue to improve. She looks so peaceful asleep. I saw pictures of her on the side. The one with the ribbon on her pretty head is my favorite.

    Be strong. Bless you! :)

  2. she is such a beautiful angel and you a dedicated proud and loving mummy! It is such a pleasure to meet you and continue this friendship!!! I look forward to reading about Emilys triumphs and adventures :-)
    This past week or so sound so positive i am smiling BIG!!!