Wednesday, November 19, 2008


Well the last two days we had 2 docotrs appointments. Monday was the kiddos 1 year check-up along with their 1 year shots. Here are their stats:

Anna- 17 lbs. 4 oz. Head cir. 16 3/4 in. Length 26 in.

Ayva- 15 lbs. 13 oz. Head cir. 16 in. Length 26 in.

Justin- 16 lbs. 4 oz. Head cir. 17 1/2 in. Length 27 1/2 in.

Ayva lost weight (boo) and Justin didn't gain any (from the last time he was at the Dr. which was 3 weeks ago). Anna gets the star for gaining the most weight!! Yay Annie- Bananie!!

And yesterday my mom and I took all three babies to CMH for the girls' EEG's (Anna's was a three month follow-up). My aunt Debbie, who works at CMH watched Justin while my mom and I were in the rooms with the girls. Anna is still good- NO SEIZURES! Thank God!! She will have to be on the medicine until she hasn't had any seizures for a year. And poor little Ayva is still having seizures and now is having some bad side effects from the medicine she is currently on. She's having trouble sleeping and eating and is very irratible (and if you know Ayva, I mean more so than usual). So we are running out of options. The next step is to start her on a medicine that is not approved in the US. You can only get it from Canada or Mexico (although it is approved in almost every single country except the US). We will be getting it from Canada. And the really sucky part of that is insurance won't pay for out of country medications. SO we have to pay out of pocket for it and it is kind of expensive. BUT, my poor baby can't learn or hardly do anything while having the seizures- so we have to find a way- any way- to stop them so she can be healthy. Even if it means sacrificing some things. The girls' Dr. said that if money weren't a factor- he would choose this medicine over all the others. He also said that he had 8 patients in the same week (including the girls) who all got diagnosed with I.S. when the girls did. 7 out of the 8 have stopped seizing after only starting Topomax (including Anna). Ayva is the only one who has not stopped seizing yet. POOR BABY! I wanted to cry when he told me that! Of course it had to be MY baby :(

I just want to ask everyone who reads this, and tell your all your friends to please pray that this new medicine works and she can learn again and be ok. Because I don't think I can deal with paying all that money, and knowing almost EVERYONE who has been on all the other meds that she has, is well again and she is not. Already so much has gone on that I don't know how much more I can handle. Thank you!


rachael said...

i will be saying lots and lots of extra prayers for ayva!

Annie said...

I will pray for Ayva. You have to keep your faith, everything is going to be fine.