Thursday, October 13, 2011

A post that's almost a year late....

A friend of mine posted on her blog last year about AAI and AOI.  This are conditions that some children with DS have--it's basically instability in their necks.  You can read about Renee's daughter's experience with AOI  here.

I'm going to quote a bit from Renee's post:

"Atlantoaxial Instability (AAI) is a gap between the C1 and C2 vertebrae in the neck. Ten percent of kids with Down syndrome have this condition but only about one percent of those actually require surgery, making it pretty rare. It is recommended that children with Down syndrome get C-spine x-rays done to check for AAI around age 3 or before they're going to have surgery that will require intubation. Most orthopedic surgeons will diagnose AAI with a gap bigger than 5.5mm.

Atlanto-occipital Instability (AOI) is even more rare. It is a gap between the occipital lobe and the C1 vertebrae. This is often missed as most radiologists are looking for AAI not AOI. A typical person has a 1mm gap here...

AAI and AOI are many times a-symptomatic, meaning there are no symptoms to clue you in that your child has this potentially life threatening condition."

Reading Renee's post brought back so many memories.  I thought I'd post about our experience with AOI and C.

C was diagnosed with AOI when he was 3 1/2 years old.  I was enrolling him in gymnastics.  He was a climber but he also favored (he still does) one side of his body and I thought gymnastics might help that.  The owner of the gym suggested that C be cleared by a physician first before I enrolled him.  So I got a referral from our pediatrician and took C to a neurosurgeon at the children's hospital.

C had the x-rays done and a CT scan.  We found out that he had instability between the base of his skull and the first vertebrae.  His movement was 8 mm.  The doctor said that at 10mm they do surgery where they fuse the skull to the vertebrae.  At 8mm, it wasn't imperative that we have the surgery done, but the doctor said he could not clear C for any sports, horseback riding, Special Olympics, diving (which wasn't that big of deal at the time--C hated the water), etc.  We were told if we were in a car accident, even a fender bender, that C could become paralyzed.

While the doctor was talking, all I could think about was how C would "dive" over the back of the benches at church on Sundays.  I wasn't always able to stop him, and he landed on his head a few times.  In fact, there was a couple who started sitting behind us and would catch C when he'd dive.  (DH was in the bishopric at the time--so it was me against 3 kids :) )  The other thought I had while the doctor was talking, was how C's older sister loved to climb trees and they both loved to wrestle with their Dad.  I knew that I would worry every time the kids were playing that C would get hurt.  So we decided to go ahead with the neck fusion.

The doctor who diagnosed C also said that most doctors do not check for the occipital instability (the type C had).  When C had his tonsils out at 14 mos, he had been x-rayed before the surgery because he was being intubated--but I don't know if the radiologist saw the instability.  C had his adenoids removed at an outpatient facility when he was less than a year old--and he was not x-rayed before that surgery. 
The doctor took a piece of bone from C's hip and grafted it with some metal hardware to the base of C's neck down to the 4th vertebrae.

C had to wear a neck brace for about 5 or 6 months.  And he had yearly check ups until he was 8 years old.  The check-ups were partly to make sure that the bone graft took, etc, but it was also to make sure that C's neck continued to grow.  He has movement in his neck but he can't tip his head from side to side as far as other people can.  After he got the neck brace off, C was able to take gymnastics.:)  He loves gymnastics!!

When C was 7 years old, on New Year's Day, we went sledding.  As we were driving up the canyon where we were going to sled, an ambulance passed us on its way down the canyon.  We arrived at the golf course and went to the smaller hill (it's actually the driving range) because there were so many people sledding.

At one point, C was laying on his stomach on the sled and slid down the hill.  This wasn't a very big hill, but it was a very loooonnnggg hill.  I was taking pictures and didn't stop him.  I didn't realize how far down he'd go.  C, didn't know how to stop himself and slid face first into a tree.  He broke both eye sockets and had banged his nose and mouth up pretty bad.  He looked like a raccoon later with the black eyes. 

The man who reached him first, PICKED C UP and started to carry him up the hill.  When I got to him, my first thought was, I'm so glad C's neck is fused.

We put C on a sled and pulled him up to the parking lot where we were met by the fire department and ambulance (the same one we had passed earlier).   It took 6 men to hold C down so that they could put a neck brace on him and strap him to the board!!!!  Luckily, his neck was fused.:)

C was in the hospital for a few days.  (While C was in the hospital, Grandpa came to visit.  This was when he said "GaPa" for the first time!  GaPa is one of C's first verbal words.  He was probably hoping the GaPa would save him from the big mean hospital!!!)

Four years ago, we were in an accident at a stop light, a fender bender.  Because of the way the accident happened, our car was hit three times.  I still have problems in my upper back/neck/shoulders from this accident.  C had unstrapped himself and so he ended up on the floor of the car.  Again, I was so thankful that C's neck had been fused.

Whenever I talk to parents about the neck instability, I tell them to make sure their doctors check for both types.  I know that if C hadn't had a doctor who looked for the both types of instability, C would either be paralyzed or not with us today.

Sunday, October 9, 2011

October is Down Syndrome Awareness Month

Last year, I wanted to post everyday, something that had to do with Down syndrome.  This year, I am not even going to try.:)  (Especially since I'm lucky to post once a quarter!!)

But today, something special happened that I wanted to share with you.

Today was our testimony meeting at church.  For those of my readers who might not know, testimony meeting is held one Sunday of each month.  Members (young and old) can stand up and share their testimony and feelings of their faith in Jesus Christ.

C loves to stand up and share his testimony.  Every month he asks if he can have a turn.  I let him go up every other month.

Today, he stood up and talked for quite a few minutes.  Often people have commented on the spirit they feel when C is sharing his testimony.  Sometimes he'll point out the people he knows--usually they are the teachers and leaders of the children or friends he has.  But other times, like most of his testimony today, he is just sharing his testimony with us.

Today, after church, DH gave me a piece of paper that a member of our church had given him.  On the paper was one of the most beautiful poems I have ever read.  This poem describes so well the feelings I have sometimes about C. 

The Unbound Tongue

What would he say
were his small tongue unbound?
What sacred treasures
in his mind would be found?

What celestial mysteries
would he share and teach?
What hearts so fettered with sin
would he reach?

He is one of God's miracles,
that His grace can shine through.
His life, dearest Savior,
draws me closer to you.

Though his tongue may be bound,
his testimony is true.
And one day,
he'll express it to you.

---- John Daly                         

Usually, with the help of the Spirit I understand much of what C is saying to me, but of course most people do not understand him.   I also know that there is so much I do not understand when he is talking to me in our everyday interactions.  I look forward to the day that I will be able to converse with him and know everything he was trying to say to me.