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.

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,

unfettered,

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.

What an exhausting day!!!

Again, such a long delay between my posts!!!

During the last year C has visited the orthodontist a few times.  I originally took him to an orthodontist a few years ago who was at the children’s hospital.  That man was not patient at all.  So after asking around, I found a new one.  I was looking for a way to expand C’s upper jaw.  His teeth are coming is so crowded that it is very hard for him brush, etc.  One of the reasons I waited until last fall to take him to the new orthodontist though, was that I was waiting for us to get Raine.

This last month, C has been to the orthodontist 3 times.  The first visit was for an evaluation and x-rays.  We had been waiting for a couple of upper teeth to come in.  At first C wasn’t very cooperative, even with Raine there.  But then I finally just let the hygienists do their job, and they took C into the room and took his x-rays and pictures, etc. I stayed out of  C's sight.  He did great with them.  He also let Hygienist J put spacers in to get ready for the expander.

Then about 10 days ago, we went back to do the molds.   He did not like the mold (I’m sure the taste was awful and it probably made him gag.)  He cried.  It was so said.  Dad had taken Raine out to toilet her, and so she wasn’t there to comfort him until the end.  But C loved having Raine “lap” afterwards.  Plus, Dr. H gave C a big hug to apologize for doing the mold.  I had tears myself afterwards.

Today, we went back to get the expander installed.  I swear C must have realized what was happening today because he had been so un-cooperative today.  Swimming did not go as smoothly as it had the last few days, and leaving swimming was exhausting.  And then getting C ready for his appt and leaving was another huge chore.  We were probably almost 20 minutes late to the appointment.  Once we got there (and of course he recognized the building) C wouldn’t get out of the car.  I had to tie Raine to the car while I worked at getting C out of the car.  Then I had to get him up a flight of stairs.  If I didn’t feel so strongly that this expander would help C (in the long run) I might seriously think twice about doing this.

Then we sat in the waiting room, while the hygienists tried to get C to come back to the chair, etc.  Dr H has Ipads, but even watching “Star Wars” or playing “Angry Birds” didn't help.  Finally I called the back up “Dad”.  Then we waited another 20 minutes for Dad to get there.

After Dad arrived, C stood up like an angel and walked back with him to the chair.  Dr. H installed the expander while Dad played “Angry Birds” for C on the iPad.  Raine got to sit up on the chair with C for a few minutes.  Then after trying to get C to let the hygienist to turn the expander once, we gave up. 

I had promised C ice cream after the visit.  But first we had to get him OUT of the orthodontic office.  C DID NOT WANT TO LEAVE.  He wanted them to take the expander out!!!!  He fought us all the way out of the office, down to the car, into the car and he SCREAMED all the way to Arctic Circle and ALL the way home.  DH said C kicked and pounded and yelled.  “He was not a happy camper.”  And he kept signing “don’t like.”  C did not want the ice cream, but finally ate it a couple of hours later.

I’ve decided that I need C to LIKE going to the orthodontist.  So I have decided that he should get ice cream every time he goes.  DH reminded me that C needs an immediate reward rather than one that happens an hour later.  Tonight, we needed to turn the expander, so DH got some ice cream in a bowl and put it next to C.  C laid down so nicely and let DH turn it!!  Then C got his ice cream. 

I think for the next appt, I’m going to buy a small cup of ice cream and bring it in a small cooler! J

And, we'll work on Raine "cuddle"ing with C more.

Meeting someone special...

I can't believe that it's been over two months since I've posted!!!  I must do better!:)


Yesterday, C had a speech therapy appointment.  He was not in a very cooperative mood.  His appointment was only for 30 minutes.  I'm not sure why I scheduled it that way.  I'm sure I had a good reason when I made the appointment.  We were a couple of minutes late and C was very angry that Dad was not coming in the car with him.  When we arrived, I had to wait for C to get his shoes and socks on (I made him walk out to the car in the pouring rain barefoot because he wouldn't put them on in the house).  We finally made it into the entrance of the buidling, when C wouldn't go any further.  Even having Raine "open" the door didn't help.  By this time we were 10 minutes late.

So I called the Susan, the therapist, and told her that we were downstairs.  We decided, since I was so late, that C and I would just go home.  But once I told C that we were going home, he wanted to go see Susan!!!  So he sat in the entrance way for 15 minutes while I played solitaire on my phone.  Every few minutes, someone would come in or leave.  Of course, C would not move out of their way and expected everyone to walk around him.  I would tell him that he needed to move out of the way.  He would just sign "sit" and point to the floor.  Luckily, there were double doors.  I even "left" him and took Raine out to the car, hoping that C would follow us.

Of course he was even madder, and wanted Raine to come back to the building.  After I put Raine in the car, I stood by C--playing solitaire.

Finally an older gentleman with white hair and a short beard exited the building.  C's face lit up and he signed "Santa".  He jumped up and gave the man a huge hug!  He was SO excited to see Santa.  After talking to Santa for a few minutes and another hug, he was ready to go out to the car.  Santa reminded him to "be good" and then told me that he has a daughter with Down syndrome.

Once we were at the car, C decided that he was still upset and needed to cuddle with Raine for several more minutes.  I played solitaire.   After another 10 minutes, he was ready to go hom

Santa sure gets around during the year.:)

Raine at the dentist...

I took the kids to the dentist yesterday.  This is actually Raine's second visit with C to the dentist.  Again, C did great!!!  Of course, I always forget to take pictures.  Maybe next time I'll remember.

C had x-rays done.  He allowed the hygienist to clean his teeth.  Raine sat next to C so that he could pet her.  While we were waiting to for the dentist, I tried to get Raine to do "lap" while C was laying in the dentist chair.  I think that with all of the equipment in the way (over and around the chair) confused her.  My sister suggested on having Raine lay on top of C climbing up on the chair from the foot.  We'll need to work on that at home working on that position.

C then let the dentist examine his teeth.  C had a cavity in one of his molars.  It was so small, he didn't need an anesthetic, but he let the dentist drill and fill his tooth.  He did so great, especially, since the filling didn't stick on the first try, so the dentist needed to re-do the filling.  The major glitch we had was when C wouldn't let the dentist put the fluoride on his teeth at the end.  Finally, after I had remembered that I had brought the Nintendo DS, he let the hygienist put the fluoride on his teeth.

After the dentist, we went to the library.  I don't like taking my kids to the library.  They have a hard time staying near me and being quiet.  But they all did great, including Raine.  Even C did pretty good at staying by me.

This great visit makes up for the fiasco last week, when C had his yearly blood draw.  He wouldn't let Raine visit with him when they were drawing the blood, so I ended up having to hold C on my lap and another tech needing to help hold his legs.  Of course once the needle was in his arm, C realized that the poke wasn't THAT bad and stopped fighting.  Plus the tech drawing the blood was smart and used a syringe to draw all the blood, so that he didn't need to change three tubes and move the needle around as he was switching the tubes.

We have lots of chances to take Raine to medical visits this month.  We still have an audiology test this week.  Next week, C has a physical and an orthodontist appointment.  Hopefully these other visits will go as well as the dental appointment.

C and Raine are featured in this quarter's issue of the Wasatch Wag.  This is the newsletter for the the the CCI Utah chapter Wasatch Champions.  He's on page 7 & 8.