Monday, June 1, 2009

Welcome back...

We are home. Ayva was discharged on Thursday and will be following up with Nephrology (kidney dr's) and we should know hopefully this Thursday on her follow up appointment with Dr. Rene (that's his first name, his last name is hard to pronnounce) what the problem all along was. It was one of these three things: HUS- a blood disorder where your blood cells get broken down and you end up having problems with your kidneys. TTP- a blood disorder where your blood cells get broken down and you end up needing to exchange plasma in a very difficult way and will NOT be fun. OR it could have all been caused by ACTH and the many infections she aquired while on ACTH in the hospital. I'm hoping it's the last one, but you never know with Ayva. We've noticed she likes to keep you guessing. Anywho, otherwise we are SO glad to be home. She is just now starting to act like her former self (although she had seizures when she was her former self and now she isn't!! So more like her former- former self!! LOL) I am SOOO excited she became seizure free after the ACTH/Vigabatrin/Topamax combination!! She has been seizure free for 4 weeks now!!! THANK GOD!!

Yesterday we took the kiddos to a spray-ground near our house and Anna LOVED it! I wish I had my camera because she got soaked and just laughed and laughed. I sort of felt bad that she wasn't able to run through the water like all the other kids there, but I kept telling myself that one day she will run and play....one day. I also felt bad that little Ayvie was catching up on some much needed Z's in the shade w/ Grandma. I can't wait until she gets to be where Anna is (catching up wise, I mean.) And Justin, of course, the only one who COULD run through the water and play was too scared to!!! The sound of the running water makes him scared!! He's so silly!

Here are some pictures of last week. Auntie Ashtin took them while I was still in the hospital with Ayva. (don't ask me why Justin is running around with no clothes on!)

This is Anna in her new chair. It's a Kimba. She can use it as a seat and it also goes on a stroller/wheelchair type thing. Ayva will be getting hers sometime next week.

She likes to point her toes like a ballerina!
Justin

And if anyone can tell me how to get the pictures off my AT&T phone (its a VU) I could post some hospital pics of Ayva.

2 comments:

blogzilly said...

Don't know a thing about the phone pics, but I know the pics you just posted are super cute!

Sarah said...

Good to hear that Ayva is home. I hope she is feeling better.