Monday, December 17, 2007

Snow and Eli update

This is our winter wonderland!!

This was taken while driving on a dirt road up in the mountains after a fresh snow! Beautiful.

This photo was taken at MIDNIGHT and look how happy he is..... He had a cold and couldn't sleep because he was coughing terribly and when we brought him downstairs, he actually wanted to play.

What a cutie! This is what my little man looks like right now! If you know us personally, you know the story of his neck. Looking at him now, you would probably never guess he started out with a 35 degree right tilt of his head and neck. He was born with a condition called congenital torticollis. Here's some information for you:

"Torticollis, also known as "wryneck," is a condition in which your baby's head is tilted. The chin points to one shoulder, while the head tilts toward the opposite shoulder. Treatment is necessary to prevent your baby's face and skull
from growing unevenly and to prevent limited motion of the head and neck.

"Congenital" means a condition that is present at birth. Congenital torticollis occurs at or shortly after birth

Congenital torticollis occurs when the neck muscle that runs up and toward
the back of your baby's neck (sternocleidomastoid muscle) is shortened. This
brings your baby's head down and to one side. This is known as congenital
muscular torticollis.

Experts don't know what causes the shortened neck muscle. Some experts
believe that the muscle may sometimes be stretched or torn during the baby's
birth. The tear causes bleeding and swelling, and scar tissue replaces some of
the muscle, making it shorter." Side bar: Eli was born via planned c-section so there wasn't any birth trauma and no one really knows how he developed this condition.

You can just barely notice it now. He is doing amazingly well with physical therapy. He started physical therapy at about 5.5 months of age and the program was a lot of stretching and forcing (not painfully, though) his muscles to stretch beyond what he could do on his own. We have done tons of therapy since then and there had been quite a bit of improvement until he got to a plateau about 6-7 months ago. So, in early October he started wearing a "TOT collar", here's a pic. of what it looks like:

The 2 posts sit just where his jaw connects (kind of in front of and below his right ear) and the other just to the right of center in the base of his skull. This collar makes it so that he cannot tilt his head to the right, forcing him to purposefully hold it straight. Dont' worry, it doesn't "poke" him or anything. It really just makes him aware of how he is holding his head, kind of like a reminder to him. Because he physically cannot tilt his head with it on and he gets use to that when he's wearing it, he holds his head up better without it on! The goal is for him to purposefully hold his head up. Since we know now that his muscles have been stretched and strengthened enough for him to be able to do this, now it's just a matter of training him to do it. And that's mostly what the collar is for. We're praying that this will be the last step in his physical therapy. It may take a while for him to be completely corrected, but we know that he can do it!!

This was taken at 3 months of age. See how far his head was tilted then?

On to Eli's other condition; hemi-hypertrophy:

"Hemihypertrophy, also called hemihyperplasia, is a greater-than-normal asymmetry between the right and left sides of the body. This difference can be in just one finger; just one limb; just the face; or an entire half of the body, including half the brain, half the tongue and the internal organs, or any variation in between."

Eli seems to only have the asymmetry in his legs. At this point, his left leg is somewhere between 5/8" and 3/4" longer than his right. His left leg is also quite a bit fatter than his right and he wears 1.5 size smaller shoe on his right foot.

We buy his shoes at Nordstrom because they are the only shoe retailer in the world that ells shoes in different sizes. We just got him a new pair about 3 weeks ago and he is a 6.5 on the right and an 8 on left..... We also then have to have a lift custom made for the bottom of his right shoe to even out his legs (to reduce hip discomfort and possible displasia).

He is followed by a geneticist and a pediatric orthopedic surgeon along with his regular pediatrician. Because of the research that has been done on this malformation - doctors have determined there is an increased risk of kidney tumors and kidney cancer in children with this disorder. And because this kidney cancer can develop very rapidly - progressing to stages 3 and 4 within only a few months - Eli has to have an ultrasound of all of his internal organs every three months until he is EIGHT years of age. In these ultrasounds they check the sizes of the organs to make sure they are not growing disproportionately since the previous ultrasound and to make sure there are no tumors or growths on the kidneys. We believe (along with the pediatrician and the geneticist) that he will not develop any of these complications because he doesn't exhibit any of the other symptoms that usually occur with the more severe cases and it seems that only his legs are affected. So, in reality, we do these ultrasounds to appease the medical community because no one really thinks that he will develop anything further - but I'd also rather know sooner than later if he were to develop something......

There is a possibility that his right side will catch up in growth, but there's no real way to know if it will happen until it either does or doesn't. He's not bothered by it and with the lift you can't even notice a difference so we're not too worried about it. He can run almost as fast as Jacob (and Jacob's about to be 4) at this point, so in reality, there's nothing "wrong" with him, he's just unique - who isn't?


My Semblance of Sanity said...

What a precious little guy! You are so blessed!

Deb in OPKS said...

Your son is beautiful. I'm glad he is doing so well with PT. Aren't those people wonderful? I'm glad his cold is better. Don't you hate it when your little ones are sick?

Damama T said...

HI! I blog jumped over here from Michelle's vicarious NY trip post. Isn't she cute!

Yes, but not nearly as cute as your little guy!
What a wonderful spirit you have. Your son is indeed beautiful and very blessed to have been given to parents who are so kind, caring, and loving.

Peace, Blessings and a very Merry Christmas!

Unusually Unusual Mom said...

So I saw you blog listed on BlogHer and popped in for a look! Then when I saw this post I had to comment. My DD (now 6 1/2) had torticollis as an infant - I know how scary it is - looks like your son is doing wonderfully! We caught it when my DD was 2 months old and did intensive PT & OT until she was 3 - now you would never know she had it! It is amazing what God can do and help us through? Merry Christmas!