Riddle

What do you get if a 2 year old...with special needs...with life threatening condition just needs a few stitches?

1- Several ER Attendings

2-Anesthesiologist3-Respiratory Therapists4-Several ER Nurses5-A tricky Sedation method6-A few thousand dollar ER bill (not to mention a pissed off 2 year old) I guess if we pray for a 'normal' boy thats what we will get. We decided to skip out on church on Sunday and have a relaxing day, well little Carter fell on the corner of our bed and split his bottom lip open. We knew by the amount of blood and how open his lip was that it could use a couple of stitches but we didn't know how anyone was going to get those in. If you follow baby Carter's story we know that he cannot be sedated or he goes into full respiratory arrest with most of the narcotics and sedatives. So our cute ER attending was beside herself not knowing what to do. She decided to try Ketamine (a sedative that doesn't make you loose consciousness). Well, it was quite the production for just 4 stitches.

2 Years Old!

Its been a crazy holiday season for us, which explains the lack of updates, so we're playing catch up. Carter is now 2 Years Old, he turned 2 on November 20th. It was such a great day for our family. I'm sure all you Hydro families know what a big milestone a birthday is!

We also had another big milestone, on January 9th we celebrated a shunt anniversary. Our shunt has lasted 2 whole years, not bad for a recalled shunt.

Here are some pictures from our birthday, I'll let Carter narrate...

This might explain why we go to Feeding therapy and why we focus on texture therapy. Smell test
Who doesn't like birthday cake? ME!

I was reminded this was a "fun" day

Ewww, they made me taste birthday cake, yuck!

Grandma learned how to say "more"

I am big drinking from a big boy cup

Overall it was a good day once they took away that birthday cake!

Enjoying the simple things in life

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!