Tuesday, November 17, 2009
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.
Sunday, November 1, 2009
Sunday, October 11, 2009
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!
Sunday, September 27, 2009
Friday, September 11, 2009
Saturday, September 5, 2009
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 firstname.lastname@example.org
Saturday, August 22, 2009
Sunday, August 2, 2009
Wednesday, July 29, 2009
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!
Tuesday, June 23, 2009
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.
Tuesday, June 16, 2009
Here is Cole's site: http://onebighappyfamilyinutah.blogspot.com/
Sunday, June 7, 2009
Sunday, May 3, 2009
First of all, oh what a cute baby that is up there! That smile was just before a major melt down, he he.
Monday, March 30, 2009
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!
Monday, March 23, 2009
Sunday, March 15, 2009
Tuesday, March 10, 2009
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!