Brody’s journey began when he was very young. When he began crawling, he didn’t crawl on his hands and knees like most kids. He used his arms and literally drug himself around the house. He left his legs straight out behind him. We called it his “army crawl” and thought it was cute. He didn’t pull his knees up to crawl until he was a year old. In fact, the first time he crawled correctly was on his first birthday. He didn’t start pulling up until between 10-11 months. We just kept thinking he was a late bloomer because he was on track with all of his peers cognitively. When he finally did pull up, we noticed that he pushed up off the side of his ankle instead of firmly placing his foot on the floor to push up. And he really used his arms to pull himself up more than push up with his bottom half. But again, we were never overly concerned.
This is how he crawled at 11 months.
Trying to pull up on the chair. I don't have a picture of the next step, but what he's about to do is pull up with his arms while pushing up off the top of his feet to get to a standing position.
We began to realize something may not be right when it was time for Brody to start walking. At 13 months, you still couldn’t place him on the floor and he just stand there like most kids do. He would immediately fall or sit down, or grab onto something. But over the next few months we still never worried. Everyone kept telling us that he’d get it eventually. His doctor examined him a couple of times and there were no obvious signs of anything being wrong. Nothing seemed out of the ordinary.
By 20 months, we knew something was up. He could walk around the house as long as he was holding onto a couch, wall, cabinet or someone’s hands. And he could bolt across a small room from one stable object to another. However, he couldn’t just stop walking in the middle of the room. He had to get to something else to hold him up. When he did try to walk, his legs were very far apart and he rolled in on his ankles. Since he couldn’t stand independently, there was also no bending or squatting down to play or pick up an object. (Honestly, when our second son came along and sat in a squatting position all day as he played, we were amazed! We didn’t realize toddlers were supposed to do that!) We saw a physical therapist around this time and he just said there was nothing wrong and that he thought Brody was just too scared to try walking because he was old enough to know he could fall and get hurt so why take the chance. However, he referred us to a local rehab facility to begin therapy to get his muscles built up a little since he hadn’t been using them like he should.
After a few weeks of therapy, his therapist recommended we go to an orthopaedic specialist to have his hips X-Rayed. He had a very wide gait still and couldn’t walk with his legs close together.
Finally at 22 months old, we went to Texas Children’s Hospital in Houston to see an orthopaedic specialist. After X-rays and exams, this doctor determined that there was nothing structurally wrong. No problems with bones, joints, hips, etc. So he referred him to the physical medicine department to see if they thought there was anything neurological wrong causing the problems.
At 23 months, we saw a doctor in physical medicine and rehab at TX Children’s. She explained that he had low muscle tone, a weak pelvic area, hyperextended knees and rolled onto his ankles. This was the first time someone looked at him and knew that something was wrong. She prescribed his first set of leg braces...something we thought was just a temporary thing that would work like a cast and once he was “better,” he wouldn’t need them anymore.
He received his leg braces right before his second birthday. They made a big difference. Slowly, his gait became narrower and he was able to walk longer distances. He wasn't anywhere near his peers, but had made a great stride.
He received his leg braces right before his second birthday. They made a big difference. Slowly, his gait became narrower and he was able to walk longer distances. He wasn't anywhere near his peers, but had made a great stride.
Six months later, we went for our followup at TX Children's. His doctor was amazed at his progress. And for a split second, I thought she was going to tell us he didn't need the braces anymore. But after further examination, she could tell that something just wasn't quite right. She said he showed signs of myopathies (muscle diseases) and wanted us to set up appointments in genetics and neurology.
We talked to our pediatrician who got us in to the best genetics doctor and neurologist. He also had blood drawn and a complete lab workup done to start looking for answers.
We talked to our pediatrician who got us in to the best genetics doctor and neurologist. He also had blood drawn and a complete lab workup done to start looking for answers.
To be continued...
