About two weeks ago our newest addition to the Persin household arrived, Aleck’s gait trainer which we refer to as his walker. I was a little nervous about getting it since he’s seemed so unmotivated to use it during therapy at the RIC but we went ahead on our PT’s recommendation since it seemed like a piece of equipment we just couldn’t pass up. The Monday it arrived we were in PT at the RIC so we took it for a test drive. Aleck did two laps of the floor, no problem. We were off to a great start. Later that week when Ali, his other PT, came to our house I suggested we try out the walker. Her first response was that if he’s been using it at the RIC and already did well in it on Monday there’s probably no need for her to work with him on it, but we both agreed that she should see him in it. Well, we had quite a shock when we put Aleck into the walker and watched him stand still for a good part of the session. He was in the hallway right outside of our kitchen, so I went into the kitchen and tried to find motivation for him to come and join me. I turned the TV onto one of his favorite programs, I grabbed my purple cup that I drink water out of (he loves drinking from it), and then I grabbed some goldfish. It took a while but he finally took a step and it was so wobbly that Ali and I looked at each other very confused. She asked me, “Was he walking in the walker or were they pushing him in the walker?”. At that moment we both knew the answer, but when I’m at the RIC it’s really hard to tell. I really thought he was walking the whole time. Then we both became really angry.
When Aleck first started in the walker at the RIC he was doing great. You read my posts, saw my video of him finishing his first lap there. He eventually got up to three laps around when he started losing motivation. I pointed this out to the PT there and asked her for suggestions on how to keep him motivated. We agreed to give the walker a rest and switch to some other activities. Well, that would have been a fine solution if he was actually walking in the walker!!!!!(yes, I’m screaming here). Why on earth she didn’t suggest to have him do the walking to increase his motivation, or at least get rid of the seat underneath him is beyond me. Personally, I think that’s a complete fail on her part and I’m still really upset about all of this. So often when kids are excelling at something and then they suddenly lose interest it’s because it’s not challenging enough. I learned this ages ago and I’m not a trained professional of, well, any kind. I can’t understand why she didn’t suggest taking Aleck’s movement in the walker to the next level. Actually it’s a huge fail on her part and my confidence in her ability to asses Aleck and keep pushing him forward is basically gone. Lucky for us Aleck is the total rockstar he is and after one week he learned to walk in his walker.
Over the weekend we took it with us to Arlington Race Track for Craig’s work outing and he was super happy walking up and down a brick path in his new toy. It was awesome to see him interact with people in an independent manner, being able to stand upright and look at someone without his mom or dad holding onto him. On Tuesday I took it with me to the RIC to meet with the head of therapy there. I wanted her to see what all of her prescriptions had gotten Aleck and how great he looked in everything. After the appointment was over I put Aleck back in the walker and he walked from the room to the reception desk, checking out all kinds of things along the way. He noticed the poster of owls on the wall, he poked his head into a room where a cute blonde woman was working and smiled at her until she noticed him. He even came into the bathroom with me and discovered toilet paper rolls and all their glory. I couldn’t wipe the grin off my face. I felt like such a proud mama and everyone was watching with big smiles as well cheering him on.Right now he can’t turn in it so I have to keep moving and adjusting him, but that will come with practice and there’s no doubt he’s going to get the hang of it. It’s already made a difference in how he tries to walk without the walker. Instead of throwing himself backwards to get his legs up he’s now keeping his body forward as he puts his feet underneath him. Ali says it’s just a matter of time but she’s confident he’s going to figure it all out eventually.
Regarding that doctor’s appointment and his recent appointment with his surgeon, he’s progressing really well. The club foot looks amazing even though his big toe keeps going through a series of small infections. We’re not sure why, it’s as if he has an ingrown toenail but then it just clears up and then comes back. As of last month we are officially onto pediatrician number 3 for a whole host of reasons. The big one is how completely failed I felt by Cahan and his practice in December when Aleck wasn’t eating and throwing up all the time. His other partner was obnoxious to me suggesting no child ever stopped eating because they couldn’t breathe and maybe I should tell him he won’t get that Corvette if he doesn’t eat his chicken. A- – H- – – -. And Cahan didn’t bat an eye when I told him how bad things were with the adenoids and tonsils and maybe that’s why his stupid NJ tube didn’t work. Then when I showed him the toe he simply said he didn’t want to touch it and gave me no help whatsoever. Plus, who wants to drive that far and pay that much to park and then get yelled at by my son’s pediatrician. DONE. Our new pediatrician asked me if I was tired of getting yelled at, he used to have the office down the hall. Too funny.
Unfortunately there are some issues we will need to address. Aleck may have tibial torsion, most prominently in his right leg where the hip surgery took place. This means his leg is pointed outwards, knee and everything. Some of it could be the shoes and bar he sleeps with at night. His feet and legs point at the same angle as his shoes and bar. Some of it could be the hip surgery and maybe even the metal plate that’s in there. So our first step is to remove the plate which we are going to schedule for sometime in January or February. I figure those months suck anyway so might as well throw a surgery in there. However, we can’t correct it any further until he’s done wearing the shoes and bar which won’t be until after his third birthday. There is a chance we are looking at another surgery down the road, maybe about 4 or 5 years later when his bones are stronger and more developed, to go in and correct that rotation. Ugh. But in the meantime there isn’t much we can do except to keep encouraging him to sit, stand, and walk as much as possible. There is a chance his leg could correct itself after the shoes and bar come off so keep your fingers crossed!
You can watch new videos of Aleck in his walker in the videos portion of this website or go to:
http://www.youtube.com/watch?v=TaCfrTcGXSQ&feature=share&list=UUSqsHFsK9AUws_k8CX8wtmQ
http://www.youtube.com/watch?v=A8E5o3s2HKk&feature=share&list=UUSqsHFsK9AUws_k8CX8wtmQ
http://www.youtube.com/watch?v=8qFkeoipics&feature=share&list=UUSqsHFsK9AUws_k8CX8wtmQ