Carter’s Amazing Journey – October 2010

It has been a year since Carter started walking independently and he has been on the go ever since!!! He would like to run everywhere and is told a hundred times a day to "Go Slow!!!".  He's a very active little boy and we're so thrilled with all of his progress.  It's always great to go to Montreal and show them how well he's doing.  The first week of October, we flew to Toronto where Carter loves the moving sidewalks and going back and forth across the airport.  We always have a bit of a wait there before we continue on to Montreal, but Carter always keeps us busy!

The following morning, we headed to the hospital where Carter got his bone density scan first.  He's now trying to run the show on the first floor too as you can see in the following photo!  He got to type his own name into the computer and was quite proud of himself!

We took a few pictures of some of the things we do on a regular basis when we go to the hospital to give others an idea of how much is involved every time we go.  For his bone density scan, he has to lay perfectly still for about 20 seconds while the machine moves over top of him.  When he was younger, it seemed like the longest 20 seconds of our life every time we had to do it and there were times where it took 10 tries to get it without him moving.  He's a lot better about it now and all it takes is one of us counting to 20 and he will do it in one try like a champ!

As Carter has gotten older and more mobile, it may seem that the need for a wheelchair has diminished.  However, this is exactly the opposite because we feel he has a higher likelihood of fracturing as he becomes more active and runs all over (not always watching where he is going!).  He has not had a major fracture since he was a month old, but earlier this year in July, he took a little tumble and likely cracked his tibia.  He couldn't weightbear for about four days and it was definitely a wakeup call that we should be looking at getting him a wheelchair before a bigger incident occurs.  Luckily, there was a little chair donated back to the hospital by Charlie, a  good friend of ours that we have met several times at the hospital.  When he was finished with this chair, they gave it back to the hospital for others to use and since it was a perfect fit for Carter, it was decided that they would refurbish it and give it to him!  We didn't feel that he needed to have a brand new one at this time since he will only be using it after a leg fracture and were so happy that we would be able to pick this one up on our next trip in February.  We'll have it on hand should the need arise and that helps us breathe a little easier!  Since Carter is now in preschool two mornings a week, a chair would allow him to still attend with his peers after an injury and give him the independence he needs.

We were unable to see Dr. Ouellet, the spine doctor, again this trip as he was away at the time we were there.  We knew that Carter's back brace needed some adjustments so we were able to get that done.  The office we needed to be at for the adjustments was quite a drive from the hospital, but one of the fantastic Shriners took us out there and waited around until we were finished so he could drive us back to the hotel again.  That service is appreciated so much by us as driving in those Montreal taxis is always an interesting experience!

Here's another photo of one of the routine things we do on every trip to the hospital.  Carter hasn't gotten full body x-rays for a long time, but he does require a spine x-ray every trip to monitor the progression of his scoliosis.  The x-rays are forwarded to Dr. Ouellet and since we didn't hear anything after we got home, we will assume that there were no major changes!  Such a brave boy!

We also visited Dr. Schwartz, the dentist that works with many of the children with OI from the Shriners Hospital.  She has a lot of experience in identifying problems these kids will have and she can also diagnose DI (dentinogenesis imperfecta).  Approximately 80% of people with Type III OI (like Carter) will have DI so we thought we should make it a point to get her opinion.  Carter's teeth are fairly white and in good shape so we were hoping that she would say he didn't have DI of which the characteristics are typically things like discolouration, transparency of teeth, small and/or misshapen teeth and extreme wearing down of the teeth.  We were glad to hear her say that she was very sure he does not have DI and she was pleased with the condition of his teeth.  She took photos for her files so she can monitor him as he grows in case he has any difficulty with having a small jaw or other issues.  It was so great to have another expert to visit and put our minds at ease!

After his treatment, x-rays, bone density scan, physio, OT, dentist, and brace adjustments on this trip, he was so glad to be able to get into the pool on our last night and relax in our room!  It was a very busy trip, but we got a lot accomplished.  Our next trip will be in February and it will be time for his big OI conference again.  His treatments have been decreased by half in hopes of maintaining his bone density at its current level since it is not good to get it too high either.  This means he will only have his IV in for one day next time, but with many appointments and possibly a new back brace, we're sure to be busy again!

 

Carter’s Amazing Journey – June 2010

We went to Montreal during the first week of June for a regular trip for treatment. Carter had been feeling good and not complaining about being achy at all. We had great flights and went to the hospital on Tuesday morning to start his Aredia.

His bone density had increased a small amount again and his IV access went very smoothly that morning.  He managed to get quite a few friends into the treatment room to start his IV and they must have brought him luck as it was a one stick morning again!

With some of the recent cutbacks at the hospital, the staff in the playroom has decreased so there is not always a child life staff member there to facilitate programs for the kids. They have many other responsibilities as well so it's been somewhat frustrating for everyone to not have adequate staff to be with the kids. We were lucky enough to have a music therapy student there for one of our mornings so she spent some time with Carter singing and playing instruments.

Most of the time, there is a Shriner to drive us to and from the hospital, but when he isn't available or has already left for the day, Andre will take the time to take us back to the hotel. He seems to do a little bit of everything around the hospital and has become a good buddy to Carter!

We had good reports from all of the doctors and Dr. Fassier was pleased with the healing that had occurred after Carter's surgery last January. He is no longer wearing his AFO braces on his lower legs and the bones are staying nice and straight. His scoliosis hasn't progressed any further so we are hoping the brace will continue to keep his curve where it is now.

Dr. Fassier was scheduled to come to Regina just a few days after we were in Montreal. He was coming to speak at Ceremonial and decided to film some of Carter's achievements to use during his presentation. At the time, we didn't know that he was going to show the footage in Regina and were just glad he thought Carter was doing so well. Carter had a lot of fun showing off for the video camera as his PT, Stephanie and he demonstrated things like standing, walking, and climbing stairs. It was so neat to see it a few days later on the big screen during Dr. Fassier's speech.

Just a few weeks after we got home, our family travelled to Portland, Oregon for the International OIF Conference for those affected by OI (Osteogenesis Imperfecta). It was an incredible experience meeting so many of the people we have talked to online. Our OI Parents group got together quite a few times and Carter had a great time playing with so many new OI buddies while we attended informative sessions. The conference attracts many well-known specialists in the OI field and Dr. Glorieux from Montreal Shriners was there to give the closing keynote address. It was an excellent session and made us so proud to have him as one of Carter's treating physicians.

Carter sang in the talent show in front of a few hundred people and Dr. Glorieux met him coming off the stage to give him a big hug and tell him how proud he was of him!

There was an interesting booth set up by the company that manufactures Fassier-Duval rods. Carter got to hold one of the telescoping rods that he has in his femurs. Pretty cool!

Following the conference, many members of our OI Parents group went to Camp Attitude just south of Portland for a week. This amazing camp for children with special needs set aside a whole week of camp just for kids with OI since so many of us were in the area for the conference. It was such a fabulous experience for Carter to be with so many other kids like him and to be 'normal' for a week! They planned so many fun experience for the kids and made each one safe for them. He had an awesome time and we are hoping to go back again next year!