I feel that I am not just biased when I say my son is truly inspiring. He may be only five years old, but he is braver than any grown adult I have ever met. I am so excited to share his story with you.
At the beginning of our adoption process, we found our daughter posted on an advocacy blog. She was diagnosed her with Larsen syndrome. We saw a video of her and knew right away she was our daughter. So, as we waited to bring her home, we researched Larsen syndrome thoroughly.
One day during the wait, I returned to the advocacy blog to print her profile for her memory book. And I saw a photo of a little boy. Oh, he had the sweetest face! And, he was making a facial expression just like the one frequently seen on my husband’s face. Of course, I was drawn to his sweet face and clicked on the link to watch a video of him crawling and playing with baby toys. Not only was I fascinated with his knees, which appeared to bend backwards, but he managed to find his own way to crawl across the floor.
This sweet little boy had no diagnosis, but I knew he must have Larsen syndrome as well. I showed the video to my husband and right away he asked if we would be able to adopt two children.
In November 2013, we met our children for the first time. Our son was handed to my husband at the very same time our daughter reached for me and said, “Momma!” I took her in my arms and immediately knew she did not have Larsen syndrome.
If she had not been given that incorrect diagnosis, we may not ever have pursued adopting our amazing son.
Months after being home, genetic testing confirmed our son did have Larsen syndrome, which means he was born with multiple dislocated joints. There are other characteristics of Larsen syndrome as well. Our son has a flattened nasal bridge. So, we bought glasses that have a nasal bridge built on them. His thumbs have a unique “spatulate” shape to them, and his hands seem big for his age. Better for playing basketball!
Some people with Larsen syndrome have airway and hearing issues. My son didn’t pass his annual hearing test but that has improved since getting tubes in his ears. We will, of course, continue to go for annual hearing evaluations.
Our son was born with dislocated elbows, knees, and hips. His elbows are still in the dislocated position. We are headed for a consult to discuss if anything can be done to provide him with a little more independence. Otherwise, his elbows will remain that way for the rest of his life. Honestly, who cares if he can’t straighten his arms all the way, right?
On the one year anniversary of the day we met our son for the first time, he had his first surgery. The tendon on the back of his ankle was cut just enough to release the tension, so he could bend his ankle.
Horseback riding with casts on both ankles. Nothing is going to stop this little guy!
The next surgery was supposed to address both knees, but when they got in there, things were more complicated than expected. So, femoral osteotomy on one leg corrected the knee. Then, six months later, a femoral osteotomy corrected the other knee.
Femoral osteotomy means they cut the femur and remove a section of the bone to realign the knee. About ten months later, all metal hardware which had been placed during the previous surgeries was removed.
He had a bronchoscopy which discovered tracheamalacia and bronchomalacia. Basically, this means they discovered why he coughs so much during allergy season.
He used to wear AFOs (ankle-foot orthotics). Thanks to lots of physical therapy, his ankles and knees got strong enough so he no longer has to wear them.
His level of activity reached a much higher point than was ever expected. We thought we would be able to wait several years before we would have to address his hips. But being so active was causing his hips to go in and out of place repeatedly and that caused discomfort at the end of each day.
Three weeks ago, he had a pelvic osteotomy, which is a surgery to make his hips stay in the right place. Usually, a child recovers from this surgery in a spica cast which goes from the toes all the way up to just above the waistline. We were fortunate to only have casts up to just below the knees.
The wood stick between the casts helps to hold his hips in place to make our son’s recovery more comfortable. In three more weeks, he will be able to stand and try to walk again. He will go to physical therapy twice a week until he is strong and running again.
Recovery from this surgery has been tougher than the others, specifically because both femurs were cut and the pelvic bone was cut in two places as well. In approximately nine months, he will go and have the metal hardware removed that is now holding his femurs together, but that procedure will be a piece of cake compared to all the others.
Prior to this last surgery, my amazing boy was running all over the place and climbing ladders on the playground easily. His favorite activity is standing in one place and jumping. I call it hopping, but he says he is jumping. The day after this surgery, he told me he felt sad. I asked him why and he said, “Because I can’t jump.”
I can’t wait until six weeks or so when he is able to jump again. I know his face will light up with the biggest smile the instant he realizes he can still jump!
There is a very supportive group of families on Facebook who share their experiences with each other. It is very helpful when making tough decisions regarding surgery and other medical treatments.
There are surgeons all over the United States who can treat patients with Larsen syndrome. They all have different ideas and different approaches to treating dislocated joints. With all medical conditions, I think second opinions are very valuable.
I took our son to Delaware and Texas to consult with a couple of our nation’s best orthopedic surgeons. I also took him to two local surgeons and finally decided to use one of the local surgeons for his care. We have been very pleased with our surgeon and think very highly of him. Seeing the difference in our son after surgery, we know we made the right choice.
– guest post by Teresa