Monday, June 29, 2009

June 2009 Updates

Poor Olivia has had a rough summer so far. She's had daily head drop seizures in spite of three med increases. The med changes have made her even more unsteady than she was and also sleepy. A week ago she was coming down the basement stairs without waiting for me to help her and had a drop seizure. She fell from the last step right flat on her face. Isaac ran up to get me and I nearly had a heart attack when I found her. We had just gotten an order for a new helmet with a face guard a few days before this happened but it takes weeks to get insurance approval.
We struggle everyday with how to balance her safety without locking her up in her stroller and breaking her spirit. We truly believe that if Olivia cannot at least try to run and play with the other kids that she will give up the fight. It makes us so sad. All she wants out of life is to be able to play and read like a normal kid. Please keep her in your prayers as the summer is usually her best time of the year.

Olivia a week after her fall, doing her "bead work".

On a good note, she is enjoying playing in our new sand box and swimming in the pool. She also loves to do her "homework" daily and spends an hour at a time coloring everything just so. We are planning for her big "Wish" in October where we will all be going to Disney. We found out that Make A Wish was able to rent an RV for us to drive down and back in. Our whole family is looking forward to it. I can't say enough good things about Make A Wish and will be forever grateful to them.