Friday, March 12, 2010

tons of pictures!

We are still in the hospital. Hopefully we will be able to go home on Monday.



Emily has started the ketogentic diet, we have not seen a huge change but she really has not been on it a full 24hours yet. We started it Tuesday but had to stop for her surgery, started it today again but had to stop again for some testing that required her belly to be empty for a while.

From what we can see she is tolerating the diet well.




Today she had another MRI of her brain and a lumbar puncture. The MRI is a follow up of the first one done. They are checking to see if any thing has changed over the past 3 months. The lumbar puncture is where they take some spinal fluid and test it for genetic stuff, enzymes, and other brain related chemicals.


Joe's dad, step-mom and grandma all came in from Ohio to stay for a little bit and we got a 4 generation picture.






Lonnie, Brenda, Joe and Emily







We have not seen them to have Christmas yet so that is what we did. We opened our Christmas presents in the hospital.



Here is Emily surrounded by all of her Christmas gifts!





We also had a friend from church , Christy, bring us a wonderful dinner. She has cooked for us before and it was one of Joe's favorites, lasagna. So when she called and asked if she could bring us lasagna Joe said YES before she could finish asking! Needless to say I did not expect all of this!!



Yes folks, that is real dishes and linen napkins! It was soooo good. Thank you Christy!!


One thing about being in the hospital that I hate is I don't get to cuddle with Emily. Ever since she was diagnosed with infantile spasms she has slept with me. She used to sleep with Joe and I before but she has her days and nights mixed up and Joe has to get sleep at night so he can work so now its just us two. She is my cuddle bug and it is so hard to do that with an IV in her head, cardiac leads on her chest, an oxygen probe on her toe, an incision in her belly button and a new g-tube.
So this is as close to cuddling as I can get for now.



This is how Emily used to always sleep. We said it looked like she was praying. Bringing her hands together was one of her skills that she lost and tonight she did it again!

Also while we she was getting ready to have her MRI done she rolled to one side! That was another skill she lost. I was signing the consent and almost cried!! I think they thought I was crazy! hahaha


2 comments:

  1. Love all the pictures... and what a meal Christy brought you!!! A little touch of home for sure. And she rolled to one side??? By herself????? Yippee!!!! Way to go Emily!!!!

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  2. Oh my goodness... Christy needs to make that a career... bring "home made meals" like that to the hospital!!! I bet your room neighbors were jealous of the smell! :)

    I still say, get in the bed with her! Just tell Joe to take a picture because that'll be great!

    I LOOOOOVVEEE that picture with her hands together. She always did that so young - so good to see her "prayer hands" again! Next up, she'll be raising her hands in praise again! :)

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