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A VACTERL FAMILY

What's New 2005

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What's New 2005
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Hi, it has been a while since we updated the website.  The following is what has happened with the Quijas family.
 

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Isaiah in the pool

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Isaac sleeping at the beach

April 2005 - We took a family trip to Cancun, Mexico.  We weren't quite sure how it was going to be traveling with Isaac, but everything turned out great.  Both of the boys had a good time.
 
Isaiah, our oldest boy, had the time of his life.  He was the only boy at the pool that was 3 years old so he had all the little girls surrounding him everytime we went there.  I am sure if he was older he would have appreciated the attention alot more.  At this age the girls were more of a bother to him.  They just wanted hugs and kisses and to play with his pool toys and he wasn't to happy about that, but everyday he couldn't wait to go to the pool.
 
Isaac wasn't walking yet so he was still getting a ride in the stroller and the attention he got was more from the older women.  He did not like the feel of sand on his feet but he liked it when the waves came crashing onto the shore.  He also had fun in the pool, I think this is the first time he has ever been in the pool.

May 2005 - This month was real quiet for us not much happened.  Isaac saw the heart specialist and he still has the leak in the mitral valve of his heart but it is so tiny that they are going to leave it alone.

June 2005 - We had the VACTERL Family Conference here in Denver in June 2005.  It was nice to meet so many other families.  We are looking forward to the next conference.

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Isaac on a hike with his new brace

July 2005 - I noticed that there were times when Isaac was playing he would grab his neck and cry out in pain.  He did this for a couple of weeks, not every day but enough for me to be concerned.  So we took him in to see his spine doctor and x-rays were taken.  They flexed his neck forward for one of the x-rays and noticed that his C1 vertebrae was not sitting on his C2 vertebrae correctly.  So my son was put in a neck brace until an MRI and CT Scan could be scheduled.

August 2005 - Isaac had an MRI and CT scan on the 5th.  Since he has grown a little since his last scans the doctors got a better look at the vertebrae in his neck.  We discovered that his C1 is fused to the skull.  His C2, C3, and C4 are fused together and his C5, C6, and C7 are fused together.  So he really only has movement between C1 and C2 & C4 and C5.  Since his C1 is fused to his skull it was causing him pain when he was bending his head too far forward, it would pinch his spinal cord.  So it was decided that the doctors would need to fuse his C2 to C1 and the skull.
 
It was an easy decision to make when 3 different specialist told us the same thing.  If we left it the way it is and he took too hard of a fall or we were in a car accident and his head got flung around too hard it would most likely severe his spinal cord at the top.  The best case scenario would be that he would be paraplegic or quadraplegic but most likely cause his death.  Not a hard choice to make after hearing that.
 
So surgery was scheduled for September 19th.  I knew I would be a nervous wreck until it was done, after all he is now a 19 month old boy that has just learned to run a little faster and loves to wrestle with big brother.  The neck brace didn't slow him down one bit.

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Isaac at the hospital with his halo brace

September 2005 - On September 19th Isaac had the surgery that fused his vertebrae and a halo brace was placed on my son.  He will be in the halo brace for 3 to 4 months depending on recovery.
 
They took bone from his hips, so he has 2 incisions on his lower back and also has an incision on his neck.  Since he is so young they couldn't put pins or screws in.  There is just not much room in his neck.  So this can effect the healing time.
 
During the pre-op appointment they try to prepare you for what he will look like after the surgery and with the halo on but until you see it you really can't understand it.
 
I had seen adults with halos on but never a little child.  So before surgery I tried to find some pictures on the internet.  I found some on some slightly older children but I couldn't find any on infants.  So I would just have to wait and see.
 
After surgery the doctor came out and talked to us.  He said that everything went great, his words were "It couldn't have gone better".  I was relieved that the surgery was finally over.  Another hurdle jumped and now we would need to move on to the next one, recovery.
 
When I first saw my little baby (okay not so little, he his now 27 pounds) I couldn't believe my eyes, he looked good but the halo looked huge to me.  How will he ever get used to this thing?  They tell me that he will be running again, with the halo on, but at that moment I can't see how.  I guess we will just have to wait and see.
 
His recovery is going pretty good, 3 days after surgery and he isn't even on pain medication any more, just some Tylenol.  Now if this was me I would probably ask them to keep me drugged 24/7.
 
He has started physical therapy and he can sit and hold his new weight up but he still has not been able to stand up by himself.  They say it will come in time.

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Isaac watching cartoons

October 2005 - We are now 1 and 1/2  months after surgery.  I can't believe the progress Isaac has made in that time.  He is walking now and even running.  In the weeks after the surgery I could not see how he would get to this point but he is a trooper.  We have an appointment with his surgeon the beginning of November, they will take some x-rays and check to see if the bone grafts are taking.
 
We had some other exciting news this month.  The hospital and the company that makes the halo vest (PMT) were making a new educational video.  Since they did not have a video with younger children in it they ask if Isaac would be in it.  So now others with small children can see how to care for their children when then get a halo brace on.

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Isaac at the zoo.

November 2005 - We had a pretty uneventful month, all things considered.  Isaac saw the doctors the beginning of the month and everything is going great.  If he is still making good progress at the appointment in December he might be able to get his halo brace off one month earlier than expected, what a great Christmas gift that would be.  Isaac continues to be a little boy; he runs around like crazy and still tries to wrestle with big brother.  It is not a fair fight since Isaac has all the extra hardware, but they still have a great time together.  Now this is not to say they don't fight because they do.