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!