Friday, February 13, 2009


Ayva's EEG appointment did NOT go well yesterday. She is still having seizures most of the day, everyday. The "miracle drug" that we were paying out of pocket from Canada for- did not help. We are now going to start her on ACTH shots. They are expensive and they make a baby gain weight/fluid VERY rapidly. She will be our little butterball, but as long as it works, I am willing to go into debt for it. ALSO, they have to admit her to Children's Mercy for 48 hours. They want to watch her blood sugar and make sure she is ok, and also to show me how to give her the shots. It's going to really stink having to give her a shot each day- but I am praying it works and she will only have to be on it for a couple of months. SO.... I leave you with some cute pics of our little fighter.
This was when we got home from her EEG. She was EXHAUSTED. I had to keep her up until midnight and wake her up at 4 am and not let her take a nap until she was all hooked up.


Martha Compton said...

Have you looked into applying for Medicaid for the girls? Here in SC we have a Medicaid program called TEFRA for kids with special needs that is non-income dependent and other states should have something.

Campbell automatically qualified for Medicaid due to low birth weight and it has been a godsend.

Just a thought...

Rachael said...

she looks so sweet in her dress, all snoozy!

i am so sorry that the medicine isn't working. i hope that the shots are able to work their magic and stop her seizures. i was going to suggest something similar to what martha said, good luck!

Tanna's Triplets said...

Aww, pretty baby! I am so sorry you have to go through this. I will say some major prayers you all find something that works.

PS I love the blog design!

Valerie said...

Awww....such a sweetie. I'm sorry the drug isn't working. ((HUGS))

Erin said...

I am sorry the drug is not working, but I wanted to say your babies are adorable. I am stopping by from Rachels blog, and just wanted to say I will keep you in my prayers.