Alexis R. - Quilt Finished in 2008
Born: April 7, 2005
Illness: Mitochondrial Disease
A Thank You From Alexis' Family!
June 3, 2008
Just wanted to say a BIG THANK YOU for the beautiful quilt that arrived! We love it, thank you to the ladies who made it-but I have to go-Alexis needs me!
Take care, Steph and Alexis
Alexis R.'s Story
Written by Alexis mom in 2006, 2007, and 2008
On April 7, 2005 our beautiful Princess, Alexis Patricia, joined us in the world. She only weighed 2 lbs. 4ozs, but she showed us that she was a stong little one, right from the start. She spent 74 days in the NICU and finally came home with us on June 19, Father's day!
She seemed to be growing into a beautiful little girl when in July, we noticed her head would shake on occasion. We took her to her pediatrician who referred her to a neurologist. The neurologist thought that she may have a brain tumor, so an MRI was ordered. The good news was that there was no tumor, but the bad news was that there was an increased amount of white matter in her brain, which could cause her to have developmental delays. A needle muscle and skin biopsy was performed in October 2005 by Dr. Tarnopolsky and sent away for testing on several diseases.
Over the next few months the head shakes went away and she seemed to be doing well. She was behind in her development, but she was a good happy baby. Then, in the second week in January, she got a cold and ended up in the hospital where they ran every test and found nothing really wrong. However, she was diagnosed with mild seizures at that time and put on medication. She came home and seemed to be getting better, but then she started to have problems with feeding.
After a few more hospital visits she was eventually admitted to the hospital on February 8. Tests showed she was aspirating, so she could not eat or drink by mouth because it would go into her lungs. She had two surgeries to insert feeding tubes and a rectal biopsy was performed to test for more metabolic disorders. The results have shown that she has a Mitochondrial disorder, as well as neurological deficits. There are many different types of Mitochondrial disorders, and we still don't know which one she may have. To understand what Mitochondrial disease is, imagine a city with half of it power plants shut down, it would be working below optimum efficiency. Now imagine your body working with one-half of its energy-producing facilities shut down. Every organ is affected negatively due to lack of energy. Mitochondrial disease compromises a persons life and can be fatal.
Alexis finally came home April 4, three days before her first birthday! She is on 14 daily medications and vitamins to help treat her condition and help manage her pain. She still seems to have a lot of pain and is very irritable at times. She needs sedatives to make her sleep. Right now we have a support worker who comes twice a week and we have a nurse two days a week. More help is on the way!
Alexis can't sit up,crawl/walk, talk or see. But we know she can hear! We have to make the best of each day we have with Alexis. Throughout all of this, she still manages to smile almost every day. She has shown us a great strength that we will never have. Please keep Princess Alexis in your prayers so she will continue to grow stronger with each passing day.
Update April 1,2008
So much has been added to this story. She has had so many surgeries over the past few years, I have lost count. G-tube, fundoplication, tracheotomy, tonsils and adenoids removed. Not to mention the numerous pneumonias and long hospital stays. Even though she doesn't smile that much anymore, we know she hears us and really seems to try to communicate with us, in her own way by opening her mouth. She is and will always be the strongest person I will ever know, and that being said, that most of us will ever know. She is truly a special angel among us.
