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.

April Update

Not much new to report. Our family has been very sick with the stomach flu. Olivia had it for one day, but has complained of stomach aches for several days without getting sick. Olivia also had a bad cold before the stomach flu and I had a bad case of regular influenza (no not the swine flu) which I hope she is not coming down with. She has an appointment with an ophthalmologist next week and her neurologist May 14th...

Not much to report...

Olivia has been doing pretty good this week. She was able to go back to school and have a good week. Wednesday she had another MRI with sedation that went well. We don't expect to find anything out for a week or so. Olivia is getting ready to have her birthday party soon (19th). She wants another Dora party. We are going to try to do something extra special this year and take a couple of her friends to Build A Bear in the mall and then to have pizza.

Make A Wish Foundation is in the process of setting her wish to go to Disney up for us. We had requested to try and rent an RV instead of flying down to Florida so that is what they are going to work on. We are trying to go in early October. We will be staying at the "Give the Kids the World Hotel". You can view it here.

October 2008 updates...

Olivia as a cheerleader

Halloween 2008
Savanna and Olivia

1. We took Olivia to the University of Michigan to meet with a doctor in the neurology dept. The trip was fun and she enjoyed staying in the hotel, but we don't have much new to report. We definitely didn't like the way they run the clinic because we spent 1 1/2 hours with a young resident and 10 minutes with the specialist that we went there to see. I don't think you can make a great determination on a child in 10 minutes, esp. when you hear her history second hand from a resident instead of from the family. We will continue to look for new tests and new ideas though. We are going to consult with a new specialist in Houston that specializes in mito disorders and we'll see what she can come up with.

2. Olivia has been approved medically for a wish from the Make A Wish Foundation. We are so happy for her, but it's very bittersweet. We are thinking that she wants to go to Disney.