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A VACTERL FAMILY

What's New 2006

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What's New 2006
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January 2006 - It has been a couple of months since I have had time to add anything to the web site, the holidays can get real busy.
 
Well Isaac got the halo brace off on January 11th.  I couldn't believe that this day had finally come.  It was a long 4 months for me so I can't imagine how long it felt to Isaac.  We decided to have the halo removed while Isaac was under anesthesia.  He had gotten to the point where he won't even let us clean his pins site without a big fight so we knew he would not sit in an office and let the doctors remove the brace, it was better this way.
 
After he woke up after surgery he bolted straight up in bed, it must have been an odd feeling not to have the brace on anymore.  We tried to keep him still but he wanted to get up and look around.  He was in a soft collar brace so they weren't too worried but he was still groggy from the medicine.  He only had to stay in recovery for about 2 hours and then we brought him home.  It seemed like he wanted to play with every single toy he couldn't play with when he was in the brace.  I almost had a nervous breakdown, he was running around so much and he was still groggy.
 
He always amazes me after every procedure he has gone through, he bounces back so quickly.  Well now it is on to planning my son's birthday party.  Isaiah will turn 4 on January 31st and Isaac will turn 2 on February 2nd, we will be having one great party again this year.

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Isaac eating his birthday cake

February 2006 - We had a great birthday party for the boys.  They had a puppet show which everyone loved.  Isaac is doing great since he got the halo brace, he is getting back into the swing of things.  He was in a soft collar neck brace for about 6 weeks after the halo was removed but he was glad that he didn't have to deal with the halo anymore.

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Isaac and Isaiah enjoying their birthday cake

March and April 2006 - It has been a quiet couple of months, Isaac saw his GI doctor and Kidney doctor in March and all is going great in both areas.  Isaac does not have to see either of the doctors for another year.  One exciting thing is that I along with 3 other VACTERL mothers have decided to start a national non-profit support organization, The VACTERL Network.  We hope to bring assistance to many families.

May 2006 - This month Isaac had to see his orthopedic surgeon and Cardiologist.  The orthopedic surgeon is happy with his progress, he thinks he has a better range of movement in his neck then what he thought he would have.  Isaac's scoliosis is not getting any worse, at this point the doctor said he would not even put a grade on his curvature, so this was great news.  Isaac does not have to see him for 6 more months.  We also got some great news from the cardiologist.  Isaac's heart is doing great, the leak in his mitral valve has improved it is not very bad anymore.  The doctor thinks that as Isaac has grown his valve has gotten stronger and is working better now.  Isaac does not have to see him for another year.  Other than these 2 appointments it has been pretty quiet for us.  He will have an MRI next month to check his spinal cord.  We hope that this appointment will go as good as his past ones.

June 2006 - We decided to take a drive to Fort Worth to visit my husband's family.  It was a nice trip and they were happy to see us.  We had not been to Texas since July of 2004, with so much going on with Isaac in the first couple of years we had not had the opportunity to visit before now.  When you have a child with medical problems you are always concerned that something may come up while on vacation but it was not Isaac that gave us a scare but big brother Isaiah.  On the way back home Isaiah decided to swallow a small rubber ball.  We were out in the middle of nowhere and thankfully the ball did not get lodged in his throat but it was still crazy.  We stopped at a small hospital (about 10 beds in the entire hospital) to make sure he was okay but the doctor said we had to just wait for him to pass it and one day later he did.  Other than that we had a pretty good trip.

July 2006 - It was a quiet month up until the 13th when Isaac had some EEG's, SEP's and BEAR testing done.  These are all nerve test to see how his brain reacts to different simulation.  We discovered that Isaac's has moderate hearing loss in both ears.  He hears at 55 decibels, below 20 is normal, 20-25 is mild loss, 35-60 is moderate loss, 60-90 is severe loss and above 90 is complete loss.  There are many things that can affect hearing so we are in the process of determining what is causing his loss.
 
During these test we also found out that his brain activity for his lower body is not registering very well so he will be having an MRI to determine if he is developing a tethered cord.  We will just have to wait and see what all the new test show, but I will try to keep the site updated with all of the results.

August 2006 - Well Isaac will be having his 6th surgery on August 30th.  They will be removing his tonsils and adenoids, having his tongue tie clipped and possibly having tubes put in is ears.  I will update here soon.

September and October 2006 - It has been a crazy couple of months.  Isaac did not have surgery as scheduled in August.  He was supposed to have it done at a hospital near our house and 2 days before surgery all of the anesthesiologist in this area decided that not one of them wanted to take the liability to do his care since he has so many other problems.  They thought it would be best to have it done at the Children's Hospital.  This is where I wanted it done to begin with but you know how insurance companies can be.  Since there was an Ear, Nose and Throat (ENT) doctor in our area we had to use him.
 
After surgery was cancelled I started the process of getting the insurance company to approve him to see a new ENT at Children's Hospital.  After some more testing with the new doctor Isaac was scheduled to have surgery on September 22, 2006.  They placed tubes in both ears and clipped the skin under his tongue.  During surgery they also discovered that Isaac had a flap of skin right behind his right eardrum, they removed it.
 
At his post-op appointment 3 weeks after surgery they checked his hearing again and it had improved slightly but he was still testing at moderate hearing loss.  He will have another hearing test in November to see if there has been any more improvement.  If it has not improved then we will have to start exploring other options, such as hearing aids.
 
Well today is Halloween and Isaac is dressing up as Superman and big bother Isaiah is a Karate Dude.  I'll post some pictures when I get another moment.