Tuesday, December 16, 2014

Won't the real James please stand up?

So James started army crawling the beginning of June, and six months later….still army crawling. Like a few feet if he’s very motivated.  He could army crawl anywhere if he wanted to, but he has this gift of being satisfied with whatever is right in front of him. If that’s nothing, there are his feet, hands, belly…the possibilities are endless!

Joke's on you, Mom! I don't need any of those toys you strategically placed away from me!

 However, we can see a big difference in his overall muscle tone, and he’s getting better at going from sit to stand when he’s sitting on a bench or a step! And we have plenty to keep him busy to keep moving toward that glorious day when he will be walking. Here are some of the fun activities and contraptions James gets to experience:

Proprioception activities

Proprioception is our ability to sense the positioning of our bodies.  To help improve proprioception, therapists often give patients a little more input to help stimulate that feedback to the brain.  James loves this stuff. One day, Thomas was working to help James sit with his legs in a 90 degree position on a bench. This is what happened to James.

Loving the ankle weights and theraband to help with legs going in the froggy position

When Thomas busted out the ankle weights, I was a little terrified, but James absolutely loved it.  The weights helped give feedback to his brain that this was the way his little legs were supposed to be positioned when sitting on a bench.  We started using the ankle weights when he was standing, too, as he often didn’t really want to bear weight and just let his legs hang.  Once we started using the weights, we started to see some improvement. 

James’ PT also helped us create a makeshift weight belt, using a sock and the beloved ankle weights again.  

We secured the position of the weights with rubber bands, and now we use the belt when we play on all fours and when we practice walking on our knees as well. The knee walking (sometimes with our knees over his, walking him through the motions) helps develop the alternating motor pattern James needs to crawl and eventually to walk, all with the bonus input of the weighted belt.

 Activities with new, fancy orthotics: 

Though the ankle weights helped James’ standing, he hyperextended his knees like crazy, meaning that he locked his knees to the point that he would sort of hang on his joints.  Definitely not healthy for his little legs in the long run.  So we started to look into some orthotics.  Often times, kids with Down syndrome will get a SureStep SMO (Supra Malleolar Orthosis).  This is because of soft and flexible flat feet. The SMO will help support the ankle and right above the ankle to allow for more stability. 

We needed more support than the SMO offered, but we also didn’t want to inhibit James’ development and movement during floor play with an orthotic that was too restrictive.  So we talked to James' therapists and individuals we respected and trusted, and eventually got this fancy thing!

It has the SMO, but on top of it, there’s a pullover that gives a little extra support when standing, and it becomes an AFO (ankle-foot orthosis). http://www.surestep.net/pullover.php

This brilliant contraption has been a blessing to James.  When we practice standing, we put on the pullover.  Otherwise, we hang out with just the SMOs when we’re doing floor play.  The only negative thing has been finding shoes that are big enough to fit over this monstrosity.  We had to go up three sizes, but the wonderful folks at Stride Rite were committed to finding a shoe that would be just right.  

And to practice standing and sitting and standing again, we sing the chorus from Eminem’s "The Real Slim Shady"- his new favorite song. Parents of the year. In our pathetic defense, it was the first song that came to mind that included something about standing up.  

What are they singing to me, and why are my shoes so giant?

We also put stuffed animas on top of our head to get him to stand up and grab them! The best thing for him is engaging his quads in moving up and down with controlled standing and sitting.

 It’s awesome to watch him get a little bit stronger each day.  Though it takes a little bit longer to hit all of the milestones that typically come to mind, we are blessed to see all of the little changes.  And while we are waiting, our chatterbox has plenty to say! This week’s newest words are “socks” and “wee” for kiwi--two things very close to his little heart. Maybe he wants to talk about walking before doing it. This sweet boy is full of surprises.