Saturday, November 29, 2008

Tuesday, November 25, 2008

Some funny pictures and baby pictures of Olivia

Her 1st Easter with her pink coat on.

Her 1st Easter.

Her first birthday party and her own chocolate cake.

After digging in to her chocolate cake.

Here she is at her second birthday party.

Here she is at age 2. This is what her hair would look like if we didn't put gel in it and her pony tails. We used to call her Fluffer.

Monday, November 10, 2008

A new diagnosis...

We have more upsetting news. Our neurologist informed us that they have come up with a new diagnosis for Olivia. It's called "progressive myoclonic epilepsy" or PME. Her mitochondrial problems fall under it. It's very disturbing news as it causes patients to decline mentally and physically. It can move really fast or at a slower pace depending on the patient, but there is no way to tell. Here is a link with more information.

Tuesday, November 4, 2008

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.

Paws With A Cause.

If you or your child has epilepsy and you think they would benefit from a dog, be sure to check out these websites.

1. Paws With A Cause is a wonderful organization that trains dogs to be a long term companion for people with different types of disabilities. They actually train dogs for people with seizures. Here are some things to keep in mind when thinking about applying for a dog. First of all your child needs to be age 14 to qualify. Secondly, there is a 2-3 year long waiting list (currently) so they allow you to start applying at age 12. Third is that not every training center trains dogs for seizures, in fact it looks like they are very few centers in the US. There is no cost to receive a dog, but you would be amazed to know that it takes almost a full $20,000 to fully train a dog (through donations)so you are definitely receiving a wonderful gift.

2. If your child has certain disabilities and is not yet 14, you can apply for a Service dog through Paws With A Cause- if they are age 8 or older. These dogs have less training than the ones above, but are still wonderful. The cost is free to receive one and it costs $10,000 to train one. They have a 1 year waiting list.
Thanks to Sara for this great referral!