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!

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

1st Annual Carter Classic Softball Tournament

Tis the season the Shields family fundraisers. With the success of our golf tournament we are confident we'd like to continue to raise awareness about Hydrocephalus. Our next event is just a few weeks away, we are hosting a softball tournament to help raise funds for Hydro Research. We are so blessed to be in our area with wonderful family, friends and a great community that has always supported us through our tough times. We also are blessed with such a gifted group of Neurosurgeons and Researchers that have dedicated their lives to Hydrocephalus research and I am confident they will make a difference in Carter's life and thousands of others suffering with this condition. So, we are donating half of the Softball funds to the Dr Marion Walker's Research Fund and the other half will go to the Hydrocephalus Association's Annual WALK on Sept 26th.

FIRST ANNUAL CARTER CLASSIC

CO-ED Softball Tournament

Sept 12, 2009

Deseret Peak Complex

Tooele, Utah

Teams should consist of at least 10-12 players (equal guys & gals). We play underhand pitch and you do not need to be pros. We will have raffles, 1st 2nd & 3rd place prizes. For more information or to sign up your team, please contact Brandon Shields at 801-554-4381 or Eric Shields at 801-831-5210 or email us at hydroinutah@gmail.com Your team can be sponsored by a company or just collect $20 dollars from each player.

First Annual Carter Shields Open

Saturday, our family learned just how important our friends, family and community are to us. We are so blessed to live in such a wonderfully supportive group of people who love us and who truly care about our family. Our golf event was more then we could have expected. People came from far and near, it was remarkable to see people step up and be so generous. Our family is truly changed by the amount of love we feel and the amount of support we've been given. Thank you to all who planned, participated and donated to our family. We are forever in debt to the wonderful people who came out this weekend. Thank you! Check out our GOLF BLOG for more pictures and please go to the links on the right to support the businesses that have supported us.

GOLF FORE CARTER

Its almost Golf Time!

Saturday August 1st
Shotgun Start at 8:00 am at Stansbury Park Golf Course
Lunch will be about 1:00 pm at the Pavilion (right by the Pro Shop)
Raffle about 2:00 pm

Everyone is invited out to the lunch and raffle

We have had a great response from the community, thank you to everyone who's participated so far! See you on Saturday!

15 Minutes of Fame!

Video Courtesy of KSL.com

Check it Out!

Breaking News!

This might not be a big deal in the average home but our home its huge! I heard Bug wake this morning and I could hear some wrestling around. It took me a couple of moments before I entered his room and to my surprise this is what I saw...
Carter was standing up in his crib! He was fully standing but by the time I screamed in delight and grabbed the camera he was back down to his knees. Bug usually cannot get out of laying position. Our physical therapist said that 'laying to sitting' will be one of the hardest transition to master (because of the weight of that heavy head). He was standing up in his crib! That's amazing for us. I know, I know, most kids do this by just a few months old, but its a major accomplishment for us. So we spent the night lowering his crib to where he can't fall out. What a blessing this baby is. Another milestone "they" never expected him to reach is now checked off! He'll show the world he rocks.

Prayer Request

Our little hydro buddy is in the ICU hanging on after full cranium reconstruction. We just love this little guy. We met through our local Hydro parents support groups. I have picked their brains for all of the little tricks that the doctors and therapists don't know about (other parents are my best resource). Baby Cole is a little older then my Carter and has been through everything just ahead of us, so when there's something we can't figure out we know either Cole or little John Paul will have the sure answer and solution we need. He has suffered some complications from the surgery and we wish for a good recovery. He has wonderful parents who love him very much. They have great faith that is carrying them through this hard time. We have been praying endlessly for our special Cole, please do the same. I am praying for Cole's good and timely recovery, for his parents to stay strong, eat at least one meal a day even if it is hospital food, to get some sleep on the ICU waiting room couches or the occasional doze in the rocker glider next to Cole's bed, to stay strong and to grow with each of these trials they've been given. Please pray for this family, they are truly remarkable people.

Here is Cole's site: http://onebighappyfamilyinutah.blogspot.com/

Dream Night at the Zoo

Our local zoo hosts a special event called "Dream Night," its for special needs kids from our local children's hospitals. They open the zoo only for these special kids and their families, feed us dinner and have a little performance from a special needs band then we can see all the animals. Carter didn't see any animals though, he was more interested in the glass, fence or bush that housed the animals. The rest of us like seeing the animals. Maybe next year.

Good Times

Sorry to leave the blog on such a sour subject for so long. We have good stuff to report. Everyone is healthy, happy and thriving.

First of all, oh what a cute baby that is up there! That smile was just before a major melt down, he he.

At the first of 2009 we were accepted to Shriners hospital, what a blessing that was, it is such a wonderful organization. We had a physical therapy assessment (so that was just 3 or 4 months ago) and the PT said that she thought Carter would definitely walk, she estimated he'd walk by kindergarten, but she set our goals for being upright sometimes throughout the day and scheduled us a wheelchair fitting.

Well I am pleased to report just a few months after that assessment he is almost walking. He is now pulling up to standing and "cruising" furniture. His PT thinks he'll definitely be independently walking by 2 years old. What an accomplishment for our little dude.

He's also eating a bit better then before. We started a high Calorie diet with his feeding therapist, with a bunch of high calorie ensure shakes and we are happy to report he's now got a bit of chunk on those skinny little thighs.

Speech & Feeding therapy is on hold for a few months. She thinks he's doing super in both areas so we can clear some days off the schedule for...well...I dont know what we will do with a morning or two off. We still have vision, PT and OT each week, 2 therapies down 3 to go!

Vision is right on target for his age.

PT, well we're catching up, that's a heavy head to master.

OT, well I think we'll be in OT for a bit longer but our window to the world is opening and what do you know, I think we're fine with that big world out there.

Shunt Recalled

Here is the letter we received in the mail:

Dear Parent:
As we are sure you know, ventriculoperitoneal shunt devices can malfunction, and if they do, surgery is often required to repair them. Unfortunately, this is more common than any of us would like.
Recently we have seen seven instances where the shunt tube in the brain (ventricular catheter) has become disconnected from the rest of the shunt. We have only seen this with the BioGlide catheter.
The manufacturer of BioGlide, Medtronic, has recently issued a voluntary recall of all BioGlide ventricular catheters. This means that BioGlide catheters will no longer be used, and the hospital supply of BioGlide catheters will be sent back to Medtronic. The company is not recommending any action in situations where the BioGlide catheter is currently in use by a patient.

Your child has a BioGlide catheter in place, the neurosurgeons and staff feel that you should be aware of this issue, but they feel that the risk of a problem because of this new issue appears very low. The neurosurgeons are not recommending that these ventricular catheters be removed or changed. If you have concerns, however, the hospital staff would be happy to arrange for a CT scan to check the shunt and the ventricles, without a cost to you.

Isn't this nice, as if we don't have enough to worry about. How does a shunt get recalled, especially the one that is lodged in my baby's brain? I wish I may I wish I might, wish that there will be an alternative to our shunt someday!

Big Boy!

Look at what a big boy we are! He just took a giant leap in development, where everything is just working right with his vision, physical, sensory, really everything (yes even eating). He is now sitting independently. We put him in a sit up high chair at a restaurant for the first time, in a shopping cart at the grocery store, and a big sitter in the bath tub, what a big boy! He loves being vertical in the world, how much easier it is to take him places. Positioning has always been a hurdle for us, I imagine it will be for a while. He has been able to sit supported for a while now but had to rest his head after a couple of minutes. So this is a big deal to our world and a big milestone in the Hydro community. Go Bug!

Upper GI

We went to the GI (tummy) doctor because of our frequent vomiting. Bug vomits every day, most days its several times a day. He eats, he gags, he chokes, he vomits. Projectile vomit is just part of our lives everyday. We started feeding therapy about 6 months ago, she works on eating, food volume, gag reflex, textures, desensitizing, blah (all without success). I think it's probably the biggest trial we have right now. So we were referred to the tummy doctor by all our therapists and doctors, they were just sure that we have something wrong with the structure or the mechanics of our tummy. So we went to the hospital were they gave him a bottle and recorded the fluid going from his swallow to his upper intestines. It only took about 20 minutes and it was very invasive. The radiologist (dude doing the test) said that from his throat to his intestines were perfect!!! We've never received good news from a doctor before, it was quite refreshing. He said that his tummy looked very healthy and "well built". Yeah! What nice news. So what does that mean for our vomiting? Oh that means he's got a mental block with eating, it's called an oral aversion. He has something going on in his brain that tells his body that food is bad and needs to be thrown up. They did confirm he does have reflux. His GI doctor says he is about 6 pounds under weight, he only weighs 20 pounds and he should weigh 26 pounds right now. So more feeding therapy.

It's a Boy!

My sister and her husband had their second baby Monday night, It's a Boy! He's super precious and a bit chunky. He came out at 9 lbs 1 oz just an ounce shy his brother. He has his brother's eyes, oh he's just beautiful. We cannot find his name tag anywhere on his little body so we don't know what to call him yet. Oh just look at those giant cheeks. He's already eating great and he has such a sweet little spirit already. Tonya has a cold and she's been a bit sleepy with cold medicine, but she's basking in all the newness of this little guy. Yep and I'm that crazy aunt that is loud and in his face and I just can't share him. Oh he's scrumptious, I just want to kiss those cheeks!

Elephants

Elephants are pregnant for 2 years, my sister is close! She's 41 and a half weeks pregnant, she's 10 days over due. That baby is quite comfortable where it's at and I'm starting to think she's quite comfortable being pregnant forever. She's scheduled to be started Monday morning, so we should have that baby by lunch tomorrow! She doesn't find out what she's having with any of her babies, I just know it's a personal attack against me! How am I suppose to shop? Her first baby was right on time and still was over 9 pounds, sheesh, lets hope this one is able to come out!

Our New Wheels

Check out our new walker, we got accepted to Shriner's! That hospital is such a blessing, what a wonderful organization. We were accepted for care and we've been to a couple of appointments already. We are now going to get Physical therapy and Occupational therapy there, we've already seen a great difference in the care just from Primary's rehab and Shriner's, we are very impressed. So, this is our new walker, it's designed to hold his body and work those legs and get us up walking in no time. Our new PT thinks we will be walking in just a few months with this wheelchair. Then we'll get a little pony walker where he just hangs on (it's a miniature old people's walker) it's pretty cute. In his new walker he's stuck in reverse, it might take a few days to get the hang of our new wheels. This is just about as adorable as it gets, don't you think