Tuesday, August 16, 2011

I have 2 Legs!!!

First, I have to say... SHRINERS- WE LOVE YOU!!!
 This month has been a big one! Lincoln turned one, he got his first prosthesis and is now learning all that goes along with balance and being able to stand. The first time we saw him stand was one I will never forget. He tried to gain his balance for a couple of minutes and when he did, he clapped and cheered with the rest of us as we celebrated his newest triumph. He is so animated and has such a sparkling personality. He captures my heart over and over again in a new dimension everyday.
 He really can balance pretty well on his beloved fire engine. He hasn't yet learned how to actually take steps on his own, but I am sure it is not too far off.
This is his first leg, which is just kind of a trial one for a month to make sure it fits, and does not rub too much on his stump. He will get the actual real deal in the coming month when we head back to Shriner's and report that all is well.  He likes to look at it and feel it and try to untie his shoe. The leg is straight with no ability to bend, so all of Lincoln's movement has to come from his hip. I think it is a bit heavy and he feels like it is in the way for being mobile on the floor, but I know he will find a way to move it around eventually.

Another new piece of information... Lincoln has finally been diagnosed with craniosynostosis. I have known for quite awhile that his head shape was something more than what was being explained to me- you know the feeling when your instinct and gut tells you there is more to the picture than the docs are seeing. We have gone through 5 helmets in 6 months and his head shape has remained virtually unchanged. NOT NORMAL!!!
Hello people. This is when I really get heated. I have asked a gazillion and one times if there could be something else happening and affecting his head shape. NOPE I was told he just has a severe case of positional plagiocephaly that will take longer to correct.

Thank you again to Shriner's Hospital and their dedicated staff- they mentioned to me that his head shape was quite irregular and asked if I had his head checked. "Why, yes I said, by my pediatrician, neurologist and orthotist many times- all to no avail of any recommended further treatment. The surgeon at Shriner's said,"Ok, as long as it is being followed."

His statement pushed me to take further action and get to the bottom of it. So, the next day I made an appt. with all 3 docs AGAIN, whom all said I don't think it is anything but they ordered x-rays and CT scans to appease me. 3 days later we find out he does in fact have a significantly more serious condition which will require surgery AND very soon. You can look at this site to see what our little man will be undergoing this time around. www.cappskids.org

In general terms, one of the bones on the right side of his head that is suppose to stay open until age 25 to allow for adequate and symmetrical brain growth has closed prematurely and is causing his brain to grow out to the left (which makes his head flat on the right) and is smashing his eye down on the left and raising his brow on the right. That is why his head shape is not round but rather tall and a bit flat on the right. All this will be fixed in a procedure where they shave the head, cut his scalp from ear to ear and open the bone that has closed, take off the front of the skull bones and reshape them to look normal and symmetrical.

After the procedure his face and head will look better and his brain will be able to grow symmetrically and healthy. We are hoping to have a surgeon at Stanford do the surgery. We are awaiting approval. Please pray for this to happen. We would really appreciate it!!!

There is never a dull moment or really one without worry here in our house, but we are so blessed each day with joy and love and happiness and thankfulness that I really can't describe. We have an amazing BOY!!!
Loves to all!


The Small Bevell Bunch said...

Oh my goodness.. how exciting about his leg... its looks real in the pic! He is such a strong boy he will be running from in in no time :) I am praying you can have the surgery at stanford, they better let you with everything you have had to go threw! you are such amazing people to be so optomistic about everything and such and inpiration to many people! Thanks for sharing with us!

The Andersens said...

Yay yay yay yay and yay!!!!!!! Congratulations! It was wonderful seeing you and we loom forward to October!!

HILL HESS said...

YAY!!! Love to see him balancing on that leg!
Way to stick with your gut!

Carol said...

He is doing so well and I love all the pictures. I have to say how much I enjoy reading your thoughts and feelings here. You never cease to amaze and uplift me. You and your sweet family are an inspiration.
I'm sending all of my best wishes and prayers that all will go will with his upcoming surgery.

My nephew had the same thing it was scary but he did so well and now at 14 you'd never know. He and Hannah are the same age and shared a pediatrician and he (DR) actually thought Hannah had the same thing at the same time. It was kind of strange.....she didn't, but my nephew did.

Miss you.