Life is good. There's really not a whole lot to update. A friend and I recently went out for drinks and we spent the better part of the evening talking about our sons' options for bowel programs, bladder issues, continence, surgical interventions, etc. We laughed for any one who might be eaves dropping around us while trying to eat but if any one was listening, I imagine they quickly found something else at their table to talk about.
We are in the beginning stages of figuring out some of the above things. The good news is that there are a lot of options. The bad news is that there are a lot of options. Some are trial and error, some take a lot of time each evening, and there are surgical options as well. I'm the type of person who over analyzes every decision, and then I'm still prone on second guessing it. I'm even worse about it when it involves my children. I've tried over the years but this is not something I can change about myself. Luckily I have an amazing support system and wealth of information and others experiences along the way.
The other stuff we are struggling about is regarding his leg and tightness he is having. Because Alex's legs are paralyzed, we need to do range of motion for him. It sounds fancy but really its just moving his legs and stretching them out so they don't stay in a "stuck" position. When your body doesn't move, it gets tighter, tendons get shorter and its a vicious cycle. We stretch him every diaper change with a lot of time spent in the morning and at night. He also "stands" in his stander every afternoon for weight bearing and also it helps to stretch out his hips and knees--the two areas he really experiences tightness.
He prefers to be in his wheels most of the time because lets face it, its fast. The stander even though it also has wheels is much bulkier, heavier and frankly just not as much fun. We have to have him a minimum of an hour a day but our goal is now closer to two hours. He's not a fan but we're making it work.
We saw his orthopedic doctor recently who is concerned about how much tightness he is having in his hip and leg. Its been particularly hard lately to stretch him out, as he seems to "boomerang" right back into the bent position. This is causing posture issues, especially in his wheel chair and could down the road also affect his scoliosis further. His doctor suggested if aggressive stretching and therapy don't improve things, we'd be looking at a surgery to help release the tendon but also because of the areas involved, would also have to cut into the bone. For any one who speaks "ortho", its his IT band and sartorius as well as hamstrings that are affected.
Well surgery on my child freaks me out. It doesn't matter that he's already had six of them. As any parent knows, that's just one thing that doesn't get easier with "practice." So we are getting him more therapy, learning new stretches and hoping we can avoid one, at least for now.
We recently purchased a scooter for Alex. Nothing fancy, just a plastic one with wheels. His therapist over the summer let us borrow one and Alex LOVED it. The idea was to get him out of the always "sitting" position. He's usually either always in his wheels or scooting on his bottom and that contributes to his tightness.
Well trying to reason with a three year old about why he should stretch out on his belly (or anything for that matter) is pretty unsuccessful. Our therapist at the time came up with this idea to entice him to stretch out. After the first time he tried it, no enticement needed after that. He BEGGED to "play" with it. Another plus was that it works his arms/shoulders and neck in that position.
Well this video was taken over the summer. It makes us laugh out loud and hope it does for you too. We bought him his own now and he races to use it every single morning. Its become a really fast way to get around the house. Although he goes so fast I'm considering placing speed bumps around, ha,ha.
Now the only other issue is do we get a second one? As you can imagine the scooter is not just popular with Alex, his brother loves it too....
I have another video to share of Nicholas singing his ABC's but I can't get it to load. Its audio really so not sure if I'm able to. If any one has any tips, let me know. Would love to share it.