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!

Monday, October 13, 2008

If you are a newbie to mitochondrial disorders please read!

First let me start by stating that it is really hard to find out your child has a mito disorder, esp. when a lot of us have no true diagnosis. One thing to remember is that you are your child's best advocate and no one will tell you everything you need to know in one place. Always research as much as you can. Here are just a few things to get you started:

1. Visit this site to learn as much as you can.

2. Did you know that a mito diagnosis (even if you have one but the exact one is unknown) you qualify to join the Muscular Dystrophy Association? They can help you with multiple things including helping with equipment that you cannot afford or insurance won't pay for. They also have summer camps for children 6 year old and older. They have local chapters for you to apply at. Check them out here.

3. Your child can also qualify for the Make A Wish Foundation or other wish granting foundations. This was a real revelation for me because it reminds you how serious this disease is. Check them out here.

4. See if there are any clinical trials in your area by checking here.

5. Join a local support group. You can find some here.

6. Read through all of my links on the side and they will lead you to hundreds more.

7. Do you have your child on supplements or a "cocktail" of supplements? They usually consist of something like this: Co Q 10, Riboflavin, L- carnitine, and other high dose vitamins. If not then talk to your doctor right away to see if they apply to your situation. You can learn more here.

8. NEVER give up hope that something will help you and keep trying.

Wednesday, October 8, 2008

Devasting results of a metabolic stroke...

This is Olivia during her metabolic stroke. She had two days of vomiting which is why we had to place the NG tube for meds to go down. She is also hooked up to IV and a cont. EEG. She woke up to discover that she could not move her right side at all. She was terrified and screamed and cried. We took her home with right-sided weakness, but she was regaining feeling. She was also in terrible pain as her right side had feeling return to it until we got her on medicine for nerve pain. Can you imagine the pins and needles feeling of a whole side of your body numb?

Late February 2008.

This is a few days after returning home from the hospital. You can see in the following two pictures how her right eye is barely open. She is right handed so she had to eat with her left hand for a few weeks. She still has some right-sided weakness.

Post stroke.

See her right eye is still weak.

This is Olivia at her 6th birthday party just three weeks after returning home from her stroke. Her recovery has been amazing and she is pretty much back to her baseline, the problem is that we can't predict when/if another stoke will strike and there are no meds for it or cure.

Tuesday, October 7, 2008

Introduction to Olivia

Riding her bike with her pink "soft helmet"

Olivia at Savanna's birth.

Sleeping in.

Christmas 2005

Rocking at grandma's house.

Fifth birthday party.

Birthday balloon- Dora theme of course!