Some of you may be wondering if Toby will ever walk, so today will answer that question. Our hope and prayer from the very beginning was that Toby would learn to walk. A lot of his movement (rolling, sitting, crawling) was really delayed not just from the paralysis in his legs, but also from restriction of being connected to the ventilator tubing.
We began using these pedi-wraps to straighten his knees and give him stability in his legs. You can see here, he's hooked up to his ventilator, but still practicing his standing. After this we had to advocate very hard with the physical medicine doctor to write him a prescription for braces. It took several months to convince her to give Toby a chance, instead of deciding for him that he would never walk. His first set of braces were HKAFO's (Hip, Knee, Ankle, and Foot Orthotics).
Toby seemed to be making some progress, but he really has little knee or foot movement, so all of it comes from his hips. We realized pretty early on, that he would either need a really strong upper body to do a swing through gait or reciprocating gait by using his hip flexion to move one leg and then swing the other leg. He also has a significant leg length discrepancy where one leg is longer than the other, so he's also had to have his shoes adjusted.
Then, he outgrew his first set of braces, and we moved and switched therapists. This time they decided to try HKAFO braces where the knees were completely stiff and couldn't bend. It seems great in theory because it gave him so much stability, but they weren't practical at all. For instance, he can't ever wear them outside of therapy or in practice walking because the knees were always bent:
The process of getting casted for braces can appear medieval in some ways, but it's painless, and doesn't take very long!
Toby's also had a mobile stander that we purchased used to help him put weight on his legs. He loves it when we get him into it, but alas last week we sold it and passed it on to another family who needs it. Toby's leg length discrepancy is too great.
In the past year, with his severe scoliosis, and the titanium rods holding his spine in place, we have realizing that most likely Toby isn't ever going to walk independently. I'm learning to accept that he's going to be a full time wheelchair user, but I have to be honest it's really been a struggle. With each back surgery, he's lost a lot of function even in being an independent mover - sitting up on his own, going from lying to sitting. The permanence of it has been very difficult to accept.
After February of this year (2014) when the surgeon attached some screws into his spine to secure the left rod, things finally began to look up. He made it through that recovery - 2 long months of now sitting up or moving his wheelchair on his own. Now, he's sitting up on his own, getting dressed again independently (for the most part), and pushing his wheelchair. Some mornings I find him doing push ups in his bed while sitting, and he can lift his entire body off of the bed with his arms! He also started playing sled hockey. I really wanted him to try it, but was so afraid because of the chance that a rod would break. Do you know what his orthopedic surgeon said, "Toby has to be a kid, and if that happens, we will deal with it when it happens!" That was so freeing for me.
We are thankful for these new opportunities and I've learned that independence in his mobility is also very important. Just recently, we got a prescription for a motorized wheelchair. It's something that I fought with every breath the last several years, but then this summer I watched as every time he would want to go next door to play with the neighbor kids. Someone had to push him, someone had to take him. It was so heartbreaking to see him sitting in his chair, a bystander, while other kids played tag and climbed their play set. I knew then that it was time to at least get a motorized chair for outside play and independence. I want Toby to be as independent as possible, however we can teach him that or allow him to have that, we will! He will still use his manual chair for in the house and other smaller areas to keep him active and fit, but now we will have another option for independence.
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