Another Miracle in a Stable

Submitted 04/11/2010

 

    Although we are quite sure that many miracles are happening at CHUM, our family is grateful for the miracle involving our daughter Katie. We are so grateful to Bonnie, Kelly, and the Bowden’s for dedication, support, and prayers.

 

    Katie Frayer is a seven year old with Arthrogryposis and Scoliosis. Although it was apparent that something was wrong during the pregnancy, Katie was not diagnosed with Arthrogryposis until she was 9 months old. Arthrogryposis is a congenital muscle disorder that is non-degenerative. It has affect the range of motion is all of her joints. She is able to walk, often using a walker for her own protection (from being bumped by others). She also uses a Permobile Koala electric wheelchair for distance because she has muscle weakness and tends to have low endurance. Katie wears AFO’s on both of her feet. She had a muscle release on the left heel cord in September of 2002. Katie also wears a TLSO for her scoliosis. She has been active in therapy since she was six months old. She currently receives OT 2x/week, PT 1x/week, horseback 1x/week, swimming 1x/week, and she also plays on a special needs soccer team. Until last August, she had also received acupuncture, osteopathic manipulation, and music therapy weekly too. Katie is also involved in church and Brownie Girl Scouts. She is very cognitive. Katie attends first grade in a typical classroom. She has a full time aid to assist her with transitions, toileting, lunch, etc.

   

    Katie was born with Arthrogryposis but developed scoliosis when she was three. It came on pretty rapidly. It went from something we had to watch to surgery within a 6 month time period; the curve had gone from 0 to 60 degrees in less than a year. We were sent to an orthopedic surgeon at the University of Michigan in August of 2001. The doctor said that she would need surgery to correct the curve. She suggested an experimental treatment in Texas. It might offer an alternative to the traditional method of fusing a rod to her spine. The experimental surgery involved removing part of her rib cage and replacing it with a titanium plate. The doctor thought that this could help straighten her spine. She called us back a few days later to tell us that Katie was not really a candidate for the experimental surgery. Further, she stated that we should plan to schedule the traditional surgery within 30 days. We were obviously upset by the entire idea. We decided to seek a second opinion. We traveled to Detroit to see another surgeon in November. He agreed that Katie would need surgery but didn’t understand the time line of 30 days either. He thought that we would be safe to wait until after school was out for the year. Very disappointed, we decided the best place for the surgery would be U of M, Mott Children’s Hospital. We made an appointment with another surgeon, Dr. Hensinger, through the help of Dr. Nelson, Katie’s physiatrist. We would not return to the first doctor. Katie saw Dr. Hensinger in January 2002. Surgery was scheduled for March, right after her 4th birthday. In February, we noticed that we were able to align her back. We thought that if we could do it then a brace should be able to do it too. We took her back to Dr. Hensinger and questioned him about it. He agreed that as long as she was flexible he would wait to do surgery. Although her back remained flexible, over time her curve continued to worsen despite the use of the TLSO. She had to be checked every three months instead of every six. Katie’s curve had reached 76 degrees. We thought that we had no other choices. The doctors and therapists had all told us that there was nothing that could be done to improve her condition except surgery. Scoliosis does not correct itself. Her therapists concentrated on areas where they could make improvements. Goals had to be made or we would lose insurance coverage. The therapists felt that there was not anything they could do to improve her curve. They thought that swimming might help to keep her flexible but insurance would not cover pool therapy. We shared our frustration and disappointment with Bonnie. Bonnie suggested that we try something different on the horse. She thought it might help. It had helped someone in the past but they were not as severe as Katie.

 

    Katie had begun riding when she was around 1 ½ years old. After the first few weeks, she began to enjoy it. We saw changes happen right away. Katie had no balance while walking and fell several times a day. Katie has no reflexes so she would fall very hard, always hitting her head against something. She had to wear a pink helmet to protect her from her falls. After a few treatments, Katie began falling less and less. Within a few months she rarely fell at all. She continued to ride sometimes we saw big improvements sometimes we didn’t. We always looked at riding as a positive in Katie’s treatment plan. We always felt that she benefited from it at some level. She loved to ride. It was something she could share with her friends. After Bonnie suggested the new positioning we hoped and prayed that it would work for her. We rode two months laying Katie over Braveheart on her side against the curve before we had an appointment with the surgeon. The x-ray report showed that Katie had improved. She had gone from 76 degrees to 67 degrees. The doctor said that we should not be encouraged because there is a 5 degree error in reading the x-ray. We continued to be hopeful and pray that this miracle would continue. It did. Three months later she had improved to 55 degrees. The surgeon was very happy but skeptical when we reported that is was from horseback riding. We were thrilled when he said that we did not have to come back for six months. We continued riding once a week for the next six months. We thought that Katie was improving but she was also losing the flexibility that had kept her out of surgery. The doctor had told us that the older she was the more rigid her back would become. We knew it was only a matter of time; if she didn’t improve quickly she would have to have surgery. We were pretty nervous about the upcoming visit when we saw Dr. Nelson, Katie’s physiatrist. She looked at Katie’s back and ran her fingers up and down her spine. She looked up and said, “you know, this isn’t supposed to happen don’t you?”. We were very encouraged.

 

  When we returned to the surgeon Katie’s back had improved again. This time her curve was down to 40 degrees (40 degrees read by the radiologist, 43 degrees as read by the resident). The doctor said if we could keep it there we wouldn’t have to talk about surgery for awhile. We pray that Katie’s scoliosis will continue to improve. Even if it doesn’t or if it remains the same, we have bought her more (very important) time to grow and develop. We are so grateful for the blessings that we have received so far. We know in our hearts that she would not be where she is today if we had listened to the first doctor. We prayed that we would find the answer and we did. Now we hope that by sharing our story, others will be able to benefit at well.

 

    The only thing Katie wanted to say when asked what she thought about horseback riding was “I LOVE IT!” and I think that says it all!

 

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