L1CAM

We have very exciting news! Carter tested Negative to L1CAM Syndrome! What does that mean? Here's a scientific definition in kindergarten terms: Well, there are ten's of thousands of genes in our bodies. Each gene is connected to one of our many chromosomes. We tested just one of those genes in Carter's body. That was going to tell us if he had L1CAM Syndrome. That is a genetic cause to congenital hydrocephalus. If he did have L1CAM that would mean that I (Mom) had that mutated gene. I would then have the chance to pass it along to 50% of my male children and my female children would have a 50% chance of carrying it and passing it along to her children, because it's attached to the X chromosome. This mutated gene only affects males (giving them hydrocephalus) and the females just carry it. I probably have confused you right?

What does this mean for little Carter?
While its really good news for any future children that the stork may drop off to our home, but it doesn't mean we are any closer to finding out why Carter has Hydro. It ruled out just that one reason, there are hundreds of other causes, or so they think.

HYDRO MOM TIP: If you are interested in more information, we went through the company Gene Dx for our L1CAM test. There isn't much information out there just by searching (atleast that I could understand) but at the bottom of Gene Dx click on "information sheet" for a pretty good explanation.

Fall 2009 School Picture

My Little Turtle!

Jordan is a hill-billy and Carter is a Turtle.

Carter's came with a cute little turtle hat but...it didn't fit. :(

Look what Carter was busted doing to the trick or treat candy

Ankle Foot Orthotics

Back to the fun posts! Just another thank you for all the fundraising efforts of all of our families, friends and community. Your efforts were so wonderful. Our family feels so supported and loved, thank you!

Lets get back to the fun stuff, the day to day stuff. I have tons of info since our last "how we are doing" post. Lets start with DAFO's (Dynamic Ankle Foot Orthoses). Our Physical therapist was concerned with Carter's ankles turning in, here's a pic of before the DAFO's were ordered. She said this sometimes happens to children who don't use their muscles often or have low muscle tone. So in Carter's case he has both those problems. We ordered from Cascade and we love them, well Carter doesn't love them, but they are doing their job. Ug looks painful...

And Here's a pic of Bug in his DAFO's. They're just like little shoes.

And today, just a couple months later, look at the major improvement:

HYDRO MOM TIP: Go to a shoe store and purchase "High Heel traction" for the bottom of the DAFO's. They originally came plastic on the bottom and he slid all over when trying to walk. Payless Shoe store sells high heel traction for just a couple of bucks. Oh and they fit perfectly on the bottom, no need to cut, bonus!

Walk Pics

Team Carter raised $2,334 for this year's walk! We are also so excited about Dr Walker's announcement that the government just awarded a grant of $1 Million to the Research efforts for Dr McCallister and Dr Walker's new research center here in Salt Lake, what an accomplishment. Dr Walker spoke at our walk about the wonderful research they've come out with and how this money will help them fund their findings for different ways of TREATING and PREVENTING Hydro. What angel's the researchers are, they work for next to nothing with very little funding. They are definitely doing great work for hydro families all over the world. Check out some of our exciting pics from the walk:

We also got a chance to perform a shunt operation on a brain:

Make an on-line slide show at www.OneTrueMedia.com

TEAM CARTER!

Join our 3rd Annual Hydrocephalus Walk in Salt Lake City. You are invited to come out and walk with TEAM CARTER on Saturday, September 26, 2009 at 9:30 am at Sugarhouse Park. Last year we came in Second place for the most funds raised and First place for the most walkers who came out to support. You can view our page and register to walk at:
TEAM CARTER'S WEB PAGE
This website is where you would register to walk, make sure you order your free t-shirt when you register.

We have done several fund raisers for this walk and other hydro events so if you'd like to donate that would be great but we know we've tapped a lot of resources lately. Last year we did have several of our friends and family go around to their friends, families and co-workers and collect donations, that would also be great again this year.

Its our family goal to raise awareness about this condition that Carter lives with every day and we are determined to make a difference for him and others who live with this debilitating condition. We hope to see a cure in his lifetime and you can help us reach that goal with our fundraisers throughout the year.

Our web address for the walk page is: http://www.gifttool.com/athon/OurTeamPage?ID=1488&AID=794&TID=4635

Please e-mail us if you need more information or need help registering at hydroinutah@gmail.com