Standing Dani a.k.a. Sam's Wheels

If you looked carefully in a previous photo, you may have seen part of this contraption. It is officially called a Standing Dani, although around here we call it Sam's Wheels. Basically, it is a wheelchair that he stands up in, and it is customized for his size and scoliosis needs. This photo is of the first time he ever used it, and his eyes lit up when he made the connection that he could move himself.

The Wheels are great for indoor used or outdoor. Sam can push himself inside where the floor is level, but he needs help in the bumpy yard. The guys from the Davis company added the pull handle, which saves my back. Thank you!!

We really like this contraption - it's therapy and mobility put together. It's great for building muscle leg strength, bone density, arm and back muscles, for stretching the hands, and for improving mobility, independence, and motivation. The other kids like it too. Indoors, they pull Sam around the dining room table, while he tells them "stop" and "go." Outdoors, he can be toodled safely all over the yard - it's quite heavy and practically untippable.

This one is on loan to us from the ISD (thanks Kim and Jamie!) but we are working on getting Sam one of his own. The folks in charge say that it usually takes about six months to get one - lots of hoops to jump through - so we are proceeding in that direction now.

It Works! It Works!

Here is Sam modeling the latest in a TLSO brace, otherwise known as a body jacket. And yes, it is covered in cute little zoo animals. Hey, you can choose from about 40 different patterns and matching straps. Statistically, for infantile scoliosis, the brace will halt or improve the progression of scoliosis in 85% of the cases.

Guess what? For the first time in a long time, this boy falls in the majority! Last September, his curvature was 28 degrees, which means we wait and see. By December, it had progressed for 40 degrees. He began wearing the brace in February, and his curve now measures 30 degrees, which his body can maintain with the brace off. We are giving thanks to God for this good news!

Because it limits his ability to do about everything (since he can't walk), he only wears it at night. It really isn't that big of a deal, as we slip it on him after he falls asleep. He does get a little stuck on the bed sometimes, and usually has to be flipped over a couple of times during the night, but he goes right back to sleep. The biggest issue with it is it makes him sweat a lot.

Please don't tell me to keep the room cool! I can't tell you how many people have asked if the room was cool - like I have no idea that a hot room might make him sweat more! He's just a hot baby, has been since he was born, and a plastic vest doesn't help. Hey, wrap yourself in plastic wrap and see if you sweat ;)

During the day he wears a Benik vest - imagine a soft vest made of wetsuit material. If you look closely in some of his pictures on this blog, you'll see him in it - it's royal blue and goes right over his clothes. It gives him a little bit of posture support, but is flexible enough to allow him to move and bend in any direction.

Anyway, we are very happy to have some definitive good news! He will continue to wear the TLSO and Benik, and we'll go for a re-check in four months. Will he continue to improve? Only time will tell, but so far Sam's progress is wonderful.