Sunday, November 11, 2007

Hi Jean!


Sophie's Story by Elaine said...

Just wondering how Lily is doing and how the Ganaxolone trial is going. I hope all is going well.

Karen said...

Hey! Thanks for the comment! And to answer your questions:

First, does Cam still use her fancy bed with the soft walls?

Yes, Cami still uses her bed and we love it knowing she is safe while she sleeps. As you may have read she is having sleeping issues and thrashes around in her sleep so we are really loving this bed right now! It is expensive but if you have Early Intervention or insurance it should be easy to do or get. 1st let me say to go ahead and print off the picture for your Neurologist and have him write a prescription for it, it put it all in high gear for us and she had that bed just 3 weeks after we put the order in. It was fast and is considered a medical must with seizures, anything to keep them safe, our insurance had no problem with it......BUT....To your next question....Her hemlet

You asked:
Also, before Cami used her helmet, would she bonk her nose? And did the helmet you got help this??

Our insurance however would NOT pay for this for some reason! And Early Intervention drug and drug their feet and it became dangerous of the hits she was taking so we put it out of our pocket. All $200.00 of it but let me tell you it was so worth every penny. Cameran took many blows to the head before the helmet many that caused us a trip to the Peditricans office for x-rays, Dental office for x-rays and to the ER. She had one hit so bad she fractured her nose, one where she knocked her front tooth almost all the way out and one where she had a massive air pocket on her head forehead to the mid of the top of her head resulting in 2 black eyes as well! It was so scary and finally we said enough was enough. Early Intervention said they would reimberse us for it but ended up not because they said we did not order from one of their carriers. would have been nice to find that out before hand!
Anyhow the helmet we did get we LOVED and Cami didnt mind it. It saved her from many bumps and bruises to her face and we felt more at ease having her wear it, we didnt stay on our tips toes all the time worried what might happen when she crawled around! It was soft not heavy and the fabric comes off to be washed! I still have Camis its purple....Do you want to use it? I have the web where we got it and the bed listed on her page under Equipmnet if you want to see it better. You can also see Cami wearing it in some old posts, its really cute.

How is Lily doing? I know this is a hard time for you guys and I just pray she finds relief soon!!!

Sending my best,
Karen (Cami's mom)