Tuesday, June 15, 2010

Ortho update

We had our ortho appt today which I was feeling very anxious about. The last time we were there we discussed Alex's congenital scoliosis which is very high up in the cervical area and already had a curve to it. This is an area that they wanted to watch closely. The great news is that you go and get the xrays and within minutes sit down with the doctor to review them. The xrays show that cervical spine still has a curve to it, and looks a little worse than last time. Most people would not notice now but Alex has a definite head tilt, almost at times like he is "stuck" with his head tilted back and to the right. We have been working with therapy for months on this and Alex has been making some great progress with this (with the help of his fabulous physical therapist "Mrs. Julie") but the doctor confirmed that the deformity in his upper spine is in fact contributing to this.

We are quite worried about this knowing that if it continues to get worse the only treatment is very delicate surgery to fuse these vertebrae together in hopes to prevent it from curving any further. The doctor has explained that we want to put this surgery off as long as possible, in a "perfect" world all the way until Alex is at least eight or nine years old so he has time to grow. Because the surgery would fuse these vertebrae together, this area would be prohibited from growing, stopping growth in any area is not something you want to have to do in a baby. And any other spinal surgery at all is not something we want to have him need again. Although the doctor wants to continue to follow this closely, he is careful to reassure us that as of right now, this curve is not significant enough at this point to have to make any decisions about. He will get more xrays in another 3-4 months. The thought of this getting worse frightens me. I can't even try to put into words how much but I will do my best not to let the worry get me. It would be fruitless. God has brought Alex (and both of our sons) through soooo much, and I have to have faith that He will walk us through this as well as He's done all of the rest.

On a lighter note, the Ortho also agreed it was time for Alex to get a stander. This is simply a piece of equipment that will assist Alex in being upright and bearing weight. The ability to stand or walk is more than just a milestone, it has huge medical benefits. The act of being upright and bearing weight alone helps to build and strengthen bones that otherwise might not get a chance to be used and as a result atrophy, makes the circulatory system work more efficiently pumping the blood from the heart to limbs, as well as improving respiratory function to the lungs. The act of being upright also enhances bowel and bladder function, as well as decreasing potential for pressure sores and skin breakdown.

I've been trying to upload this video but blogger is not cooperating. Check back later and enjoy!

In the video is our amazing "Mrs. Julie", Alex's physical therapist. In the background is one very happy and shocked mommy and a cheering brother!! This is Alex's first time pulling himself forward which is such hard work and we couldn't be more proud of him!!!!


Leigh and Andy said...

The video is SO GREAT!!! I love it!! That is EXACTLY what Grey looked like when he started inching forward. It was almost like he was going to flip over at any minute (most of the time he did!) :) SO PROUD of him!!!!
I'm sorry to hear about the scoliosis, We will be saying lots of prayers that the curve does not get worse, and that you are able to find peace with the situation and not let the worry get the best of you (I know, so hard).
And now that Alex is on the move, Nicholas better watch out! :)

Anonymous said...

Thanks again for keeping us in the loop regarding the boys. Alex looks pretty tough with his patch and helmet on! His video brings tears (of joy) to my eyes.
Grandma Karen

Kim said...

That is just precious!!! :*)

cfallone said...

Awesome video Holli! You know your boys are always in my prayers. God does have a plan for these precious babies! By the way, I think we need to get Mia and Alex together. With all their similarities, they may be soul mates!!!! She is jealous, however! Where did you find those cute patches. Ours are ugly and band-aide like! You never know, maybe Gabriella and Nicholas have some connection too!

Anonymous said...

Love reading your blog about your beautiful sons. My twin boys were born at 29 weeks, weighing 1 lb 9oz and 2 lbs. 4 oz. They are graduating from high school next week!! Thanks for sharing, it really takes me back.

Liz Keicher said...

:) What a wonderful video - YYYEAAH Alex!!!!

John said...

Ah, that's fantastic - congratulations to Alex :-) That's a proud moment for you all. I'm hoping Abby won't be far behind (she's starting moving around a bit now :-)