The summer’s just getting under way but we have been busy, busy, busy around here. I can’t believe how long it’s been since I’ve posted an update. I’ve got about 2 different drafts that I never sent so today I’m determined to buckle down and get one out to all of Aleck’s adoring fans! Please check the video portion of the site for new videos of Aleck in therapy at home and at the RIC. We’ve been working really hard on his sit to stand skills and he’s getting the hang of it which is huge progress. Right now in order to get from sitting to standing and vice versa, his legs need to be sandwiched between someone else’s with his feet tucked under the other person’s leg. He uses this leverage to power through his legs and truck to go up and down. Believe it or not I think up is easier than down in this case. When he goes down you’ll hear him complain on the videos, which is tough to hear. It might be because the stretch in his knees is sort of extreme for him. He does have mild contracting muscles in his knees so they are very stiff and he doesn’t naturally bend them, similar to his elbows. But it seems the more we do this the more comfortable he is not only with the act of going up and down but also with deeper and deeper bends in his knees. When you touch his knees in that position you can feel the skin stretched tight and can only imagine that it’s not easy for him. But he’s a determined little dude which will only help him in the long run. Lately we’ve left the gait trainer in the closet during his therapy sessions.
At first he was so motivated to walk around the floor in it, playing with his IPad and greeting all the other families waiting for their sessions to start. After about a month it was pretty clear he was just letting his feet drag and no amount of fancy apps or videos on YouTube was enough to get him going. At first this really frightened me, I mean we had just ordered this very expensive very large piece of equipment, was it all for nothing? Is this gait trainer just going to be another thing for me smack into my thighs while putting stuff away around the house? After talking with his therapists we agreed that he’s going to want the gait trainer so he can get down the hallway to see us in the kitchen, or try to chase after the other boys in the building when they are playing in the back lot. Either way, if it’s not motivating him now then it’s not worth putting him in, but that doesn’t mean he won’t be cruising in it later on.
We also have a new addition to our arsenal of splinting equipment, a new elbow splint for his right arm. The idea is that we are starting with just one splint at a very slight bend, first for 15 minutes a day and now we are up to 30 minutes a day. It’s a pretty heavy piece of equipment, though lined with very soft and inviting padding, it straps onto his arm while his arm is straight and then I turn the knob to crank it into a bent position. If he continues to tolerate it we will transition it to naps and then to sleeping at night. The splint probably weighs about two
pounds with the knob on, so I remove the knob once I have him locked into position, which does make a significant difference in the total weight. Since we’d been “socking” his right hand for months, literally putting a tight fitting sock over his hand and arm to encourage him to use his left more, this splint has fit right into our schedule replacing the sock, and forcing Aleck to use that left hand more. Before I introduced the splint I made a new toy for Aleck that I knew he’d love and would help take his mind off the new piece of machinery. It’s a large ziplock container filled with beans and little animal figures hiding under the beans. Originally I had two different types of beans and green lentils in it, but after picking up way too many lentils I spent my “downtime” sorting the beans out of the lentils realizing that they were a huge mistake. You can see a video of why and of the splint up on our video page now. Two weeks later I’m still picking up lentils in my living room. Craig and I aren’t sure if sleeping with the splint is going to work and when we do start trying I know they are going to be very long days and it kind of breaks our heart to restrict his natural movement so much, especially as he’s developing so well right now, but I keep telling myself that we have to try. Right now is the time in his life to do everything we can to give him as much mobility as possible later on. I honestly cried the first time they put the splint on him, just some tears streaming down the side of my face, it can all be a lot sometimes.
Last week we met with Aleck’s upper body orthopedic surgeon at Shriner’s. After the assesments I asked the same question I ask every 6 months when we see him, is Aleck a candidate for surgery? But this time I added, “since he’s doing so well on his own.” I honestly expected him to confirm my theory that Aleck is doing so well and that the kids who need surgery on their arms are the ones who’s arms are stuck either straight or bent. Believe or not I had very mixed feelings when he started to explain that kids who are getting as much range of motion as Aleck is on his own are even better candidates for upper body surgery. They could take muscle from his chest and put it in his arms to give him a more complete range of motion. For most parents this would seem like good news but for me my stomach just dropped. Right now, without surgeries and procedures to weigh him down, Aleck is doing so well. He’s so happy, he’s figuring out ways of moving on his own, and if we pay close enough attention he’s doing something new every single day. There is a large part of me that really believes Aleck will figure out how to do everything he needs to do to get by in life without any further surgery. He’s already shown us how easily he’s adapted to every new situation or piece of equipment we’ve thrown at him, is it really necessary to strive for such perfection? I also asked him about serial casting, if he’s ever done it or knows any families that have gone through it to improve upper body mobility. He hadn’t had any experience with it so we promised to each do our research, I’m going to take Aleck to meet with a sports medicine doctor who is doing this with other families I’ve met, and his doctor said he’d do his own research as well, then in 6 months at our next appointment we can discuss what we’ve learned. One thing he did say was that we don’t have to do anything right now. We can give Aleck this time to keep growing and developing on his own and if serial casting is a good option we can go down that road during the winter. So right now we’ll try to breathe easy and keep enjoying this time until the next big Aleck project.