Raise your Glass foundation

A.J.’s parents are launching the Raise Your Glass foundation to honor Dr. van Bosse and the work he did to get their son walking. You can read about it here. The following is my contribution.

I get air sick. I just wanted to start with that in case anyone is under any delusion that I enjoy flying 3,000 miles one-way from California to Philadelphia to see one specific doctor. My family lives five minutes away from the hospital that U.S. News ranked #2 in the nation for orthopedics. My daughter, Laelia (LAY-Lee-Uh), was not only correctly diagnosed with arthrogryposis the morning after she was born, but also with the correct type of arthrogryposis, out of more than 400 types. Our pediatrician could not only pronounce arthrogryposis, but upon our first visit he produced a photo of himself and another patient with AMC–a photo affectionately on his desk. After hearing from so many other families I realize our story is rare for how easy we had it. If anyone was blessed with a working knowledge of one of the rarest conditions in the world right from the start, it was us. If we could have had our daughter anywhere in the world, San Diego would have been hand-picked.

Yet doctors gave up hope.

I can’t explain it. Well, it’s true that my daughter did not really move her arms or legs for the first year of her life. She also has extremely low muscle tone that one local doctor described as the lowest muscle tone that he’d ever seen in kids with AMC. Despite hearing that I continued to make appointments and try to get more help for my daughter. I must have been annoying because the head surgeon actually took my shoulders in his hands and told me to accept that my daughter was disabled. Then he left the room without signing the prescription for splints in my hand. It was for knee splints and the doctors were convinced that straightening Laelia’s knees would not allow her to be comfortable in a wheelchair where they predicted she would spend her life. Every doctor’s visit came with a wave of depression as we grieved the loss of hope. The last glimmer of hope to die was when we learned about an arthrogryposis clinic in Seattle from a friend who was willing to pay for us to go there. It was the final nail in the coffin when that orthopedic big wig gave up on our daughter after one visit. He would make the fifth pediatric orthopedic doctor to say, “Nothing to be done. See me in six months.”

We found out about Dr. van Bosse after we had already given up. I hate to admit it. Even when success stories were pouring out of Shriners in Philly, I was still skeptical. It wasn’t until our friend Cheryl and her daughter, Tracey, spoke up about their personal experience with Dr. van Bosse that we agreed to see him.

At this point I felt like an AMC expert. I was familiar with my surgery options, or what little there were. I knew all about splints, walkers, weight-bearing, wheelchairs, casting and stretching. I owned the AMC Atlas textbook. And my daughter had already been through two major surgeries and some tendonotomies before local doctors had told us she was “done.” I felt so certain she had more potential than doctors could see. So we went to Philly.

The trip to Philly was rough. So rough that I was praying the great and powerful doctor was merely just the man behind the curtain.

Instead I got to meet my very first expert in the AMC orthopedic field. I was impressed with a doctor who listens, examines and waits. But I’m not here to write about bedside manner, although I remain super impressed with a doctor who will email me back within 24 hours with answers to my medical questions. Dr. van Bosse introduced us to an entirely different ¬†methodology ¬† So far Laelia had only had soft tissue surgeries. We kept hacking at precious resources my daughter needed to move. Instead Dr. van Bosse introduced us to derotational osteotomies. And unlike the doctor in Seattle who first mentioned them but would only perform that surgery on patients who “deserved” it (his PT said Laelia’s muscles were too weak), Dr. van Bosse left his crystal ball of future predictions at home and focused on the issues at hand. The most important thing was to give her a chance and see what she did with it. And unlike others we’d seen, all surgical suggestions he made were backed up by evidence. I was shown my daughter’s x-rays and then x-rays of the same exact lower body contractures of other anonymous patients before and after the surgeries he was proposing. It wasn’t a “take my word for it” pitch at all. It was a course of treatment over the next few years with known results. Instead of, “Will my daughter walk?” my questions became, “When will my daughter walk?”

Hips before.

Right after surgery.

Hips after.

Knees before.

Knees right after surgery.

Knees now. Perfectly straight and aligned.

My daughter walks. (Now I’m crying as I write this.) Everywhere. Up and down inclines, around the grocery store, all over the house. Without a gait trainer. Without a walker. Without pediatric crutches. And recently she took a few steps without even her leg braces on. Having correct alignment allowed her to exercise and grow muscles in her legs we didn’t even know she had. I can’t begin to describe how her life has improved dramatically since she gained the ability to stand and walk, something she never would have done without Dr. van Bosse. My daughter was almost five when I had my first conversation with her about walking in the street, opening the bathroom door when I’m in there and running with scissors–conversations I was told we would never have. If not for Dr. van Bosse Laelia would be sitting on wide, abducted legs right now.

Doctors should never give up on children. Children are the very definition of potential. Dr. van Bosse is the very definition of excellence in care. And all my parent friends will tell you, he never gives up.

And I joyfully get air sick to see him.

2 Responses to “Raise your Glass foundation”

  1. Melissa Rowe says:

    :) Thank God for doctors like this.

  2. Katie says:

    Wow, firstly GO LAELIA!
    I am impressed with how your daughter always smiles for photo’s…I was born with similar leg contractures to Laelia and in all my school photo’s I have my arms folded and have a very serious look on my face. Haha. Probably the tiredness!
    I came across your blog when I googled ‘adoptions arthrogryposis’ because I would like to adopt, ideally a child with AMC- I feel having that experience of endless operations will help my child deal with this and my partner is all up for it too! You and your Roland have a lot to answer for he says!
    I’ve learned a lot from you Alexis, I won’t need another resource again! Your writing is amazing by the way, it’s not easy to communicate ideas and get them picked up and understood by someone halfway around the world. All the best. Katie, Manchester UK

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