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!