Wednesday, June 24, 2009

SHIRTS FOR SALE!!!!!



We are so excited to announce that we, along with the Ridge View Boys Basketball Team, are now selling t-shirts to raise money in HONOR OF Kayla Reese for 'Madison's Foundation' (http://www.madisonsfoundation.org). There is also a link on the right side bar. 100 percent of all t-shirt sales (after t-shirt cost has been paid) will go toward this worthy foundation which is dedicated to improving the quality and quantity of information available to parents of children with rare, life-threatening disease. They also work to facilitate effective communication among parents, physicians and medical experts. As Michelle and Gregg would tell you, information about Tetrasomy X is scarce. To have an organization that connects you with other families whose child has received a similar diagnosis is a God send. Having a child diagnosed with such a rare disease can leave you feeling alone and in the dark. But, Madison's Foundation is dedicated to connecting families and helping them walk the hard road that can come with such rare diseases.

Our ultimate goal of starting our own foundation for Kayla Reese is still alive! The process of starting a non-profit organization will take time but we know it will happen! This is only the beginning. So please show your support and purchase a Kayla Reese t-shirt. Check out the right side bar for all the information. Thank you all for your support. This wouldn't be possible with out you!

Susan

Monday, June 22, 2009

Keeping Up With the Jowers...

MICHELLE SAID....

I know it’s been a while since our last update…my apologies for that! Our family made a big move to Chapin last week so it was crazy but we all have a place to sleep and a place to eat now so I consider that progress! It has also been an eventful few weeks for Kayla Reese! In late May we finally had the opportunity to meet with the geneticist and were eager to hear what she had to say. Honestly it was pretty uneventful…because Tetrasomy X is so rare, everything she had to tell us was straight from literature she had read…the same stuff we had already read! We talked a lot about her potential learning difficulties, her need for further tests such as an echocardiogram, renal ultrasound and vision screening, as well as hormone challenges she may face. The geneticist said she had never seen a case of Tetra X before but was going to work with us and follow us for the rest of Kayla Reese’s life. In addition to the geneticist, we also had to take Kayla Reese to the hospital twice…the poor child knows the hospital all too well! The first trip was for sedation for an MRI of the brain. A few days later we visited the neurologist for those results which were fair, not great, but not horrible. He said her brain was not growing at quite the rate it should, and that there wasn’t as much fluid flowing as she needed. BUT it wasn’t so severe that he saw a major issue with it. The plan is to repeat the MRI in December to see if there are any changes and go from there. The week following the MRI we took her back to the operating room – this time to get her adenoids removed, ear tubes replaced, and a hearing test which actually tested her hearing through the nerve in her bone. Surgery went well and hearing test results were pretty good too. The nerves in her bones were functioning perfectly, but she does have some conductive hearing loss, more in her left than in her right. I am waiting for the follow up to find out exactly what she can and can’t hear, but knowing her nerves are great is fantastic news!

Enough medical stuff for ya’? Kayla Reese is really progressing well. Just in the past few days we have seen her bear weight on her arms and even try to move her knees in the crawling motion!!! VERY exciting news!!! We’ve also discovered she LOVES the water and it is good therapy for her legs, so the doctor says mommy and Kayla Reese MUST hang out by the pool all summer! (wink wink!) Otherwise, we are busy working to find therapists in our new town to cover speech, physical and occupational therapies. The good Lord has already provided us with a wonderful Speech Therapist and I trust in Him more good therapists are in our future. We are also waiting on dates for her big tests – the echocardiogram, renal ultrasound and vision screening. I’ll keep you posted on those dates as they draw near – prayers are always welcome and greatly appreciated! Oh, and prayers that I will actually be able to run the 13.1 miles this half marathon requires would be nice too! John and Susan are kicking my TAIL!!! But wow, what an inspiration they are!!! And don’t forget to buy a shirt! Can’t WAIT to see them all over town!!! (DETAILS COMING SOON!)

Wednesday, June 17, 2009

Just Around the Corner

It's so hard to believe we only have about 6 weeks before the half-marathon in Chicago! This Saturday, I'll be running 11 miles as part of my training for the half. This is the most I'm going to run before I hopefully cross the finish line in Chicago after running 13.1 miles! So, I'm at my peak of training, which is really exciting! If I can run 11 miles, Saturday, I feel confident that in a race, I can finish 13.1. I just read over that sentence and can't belive I would ever be able to say something like that!

So many people have asked me over the past few weeks how I can run the distance of a half marathon. Believe me when I say, if I can do it, so can you. I am not an athletic person. God did not create my body in the image of a runner. I have flat feet with absolutely no arch (I tend to run on the sides of my feet b/c of this). Only very expensive shoes help my feet have the appropriate support for running a half marathon. If I keep up this marathon running thing, Strictly Running will be able to expand their business!

Also, I 'practice' my running A LOT!. I've been training since February and I assure you it has taken me all that time to 'practice' and get to the running distance I am now. Finally, I have a goal and that is helping Michelle and Gregg raise awareness about Kayla Reese and Tetrasomy X. I plan to post in the very near future about all it's going to take to help start a foundation to fund research for Tetrasomy X. So, keep checking back. There will be many opportunities for you to help in this venture!

Susan