Kanyon' s Gear

I feel like this post will only be interesting to a few people, but this is one of those that I'm kinda doing for myself. Raising a kid like Kanyon with the many different effects of prematurity really changed my plans for motherhood and what it would look like for me. Not only did I expect to be juggling 2 babies, but I expected them to be normal developing babies. But we all know the story here so we all know that things are different.

I had such a GREAT break over the holidays I was either here with Kory off work or I was in Paris with my parents. Of course Kanyon was spoiled, but I was spoiled MORE! But this week we got back to the ol' grind so that is what got me thinking about this post. I had to regroup as far as therapy goes. I took pictures of most things and will explain most of his therapy that way.

FYI-Therapists that we see:
Physical Therapist- 2 days a week for 45 min. Currently we're working on weight bearing on legs, hips, and arms. Getting to crawling position, strengthening left side. Basically any gross motor

Occupational Therapist-2 days a week for 30 min. For Kanyon, her main focus is using and strengthening his left arm. She also does some weight bearing especially with his left side. Developmental "play" tasks with his right arm.

Speech Therapist-Feeding. 2 days a week for 30 min. We're working on taking pureed food from a spoon and eventually (like WAYYY future) real food. We started with an empty spoon worked our way up from empty to water to tiny tastes to bites. She also does a few exercises to desensitize his mouth.

A vision therapist comes to check in 2 times a month...she is just watching his vision/tracking, etc.

Ok here we go:

This is a NUK Brush. Used before we start feeding we are working toward him letting us put it in his mouth and rub it all over. I do this at the beginning of our feeding routine when he's going to eat baby food. For a while my goal was to "feed" him once a day for a good 20-30 min. session to build his endurance. As of this week, the therapists said for me to start trying to get 5 bites before every bottle. With sleep schedule, etc. I'll be doing good if I can do that 3 times a day. Then we'll work our way to more and more bites.

This is his newest "gear". I got a Magic Bullet for Christmas. They suggest pureed people food instead of baby food from a jar. We can get more calories that way. So I mix up different things (yes, it kinda grosses me out) and pour them in ice cube trays to keep in the freezer in little tiny portions. We are finally to the point of letting him try lots of different tastes. So far he likes peaches and one day he LOVED beef stew, this week proved that mac and cheese makes him gag and throw up. We are still not eating "food" for nutrition but we're taking it one tiny bite at a time.

Our awesome OT worked so hard making this crazy splint for weight bearing on his arms. We would get him to crawling position, but his left hand would stay fisted. This kept it open. We haven't used it in a while because he's doing better keeping it open. yipee!

This is some tape stuff kinda like sticky ace bandage. One of the things we're working on his left hand is grasping and holding objects. We place one of these small objects in his hand and then wrap it up so he has to hold it. Then we un tape it and see if he holds it better. We do this off and on and it seems to help. I don't do this daily, just kinda every now and then.

This is new. It is an immobilizer. The main purpose is for his left arm when he's in crawling position. It will keep him from bending it and help him bear weight on that arm. I might start using it on his left leg during naps to keep it straight while he sleeps instead of staying bent. Anything we can do to decrease the tightness helps. I just can't decide if its going to bother him too much to sleep good. I don't think it will, but I've only done it 2 times. I try to do this on his arm at least once a week. It takes a lot of "handling" of Kanyon and I'm not as good as our PT at that especially if there is no one here to distract him and play with him while he "works".

Boots..you know these things. He wears these anytime he is in his standing frame and for at least half the day otherwise. We're hoping that they are keeping his feet from tightening up and they keep his feet in the appropriate position when he's weight bearing. He's about to outgrow them so I wouldn't be surprised if new ones are coming soon. Fine with me. I hate this pattern on them, it looks sissy. The lady that made them tricked me. She said it was manly and I trusted her sight unseen. Shouldn't have. We gotta get much more manly next time.

This is a neoprene back brace (great idea by awesome OT Angela) that we use to restrain his right arm so that he has to use his left. This, while it seems cruel, has been great for Kanyon. He has really responded to this and his left arm is getting better. Ideally, we could have him in this a TON (like 3 hours a day) but I feel pretty good if I get in an hour at a time (at least 30 min. at a time). We just tie him up and play with toys or whatever we can do to encourage him to use his left hand and arm. Its just hard to do this because he can't sit on his own lop-sided and he gets a little frustrated after a while AND he works his right arm out eventually!

New supinator splint (already blogged this) it is supposed to keep his arm in a neutral position, not turned out. It also kinda keeps his hand open. I like it and thinks it works. I try to keep this on him pretty much all day.

The bench. It has different heights and we just raised it for a new purpose. Getting him up on his knees so that he feels the weight on his hips and learns to balance as well as discover that there are different opportunities at different levels......if that makes sense. We used to use it for him to sit on top of and work on sitting really straight while his feet were flat on the floor.

Or we would sit him at it like a desk so he could play while we stretched his leg. But now that we raised it, its a perfect height for gnawing. I try to use the bench 2-3 times a week.

Standing frame. I blogged about this when we first got it. It is basically a way for Kanyon to be upright and feel that weight and allow his body to bear it and get stronger and let his brain "learn" from being upright. To me this is the beginning stages of teaching him to get up and get moving! I have a sash tied to the tray and have toys hanging off of it. I got tired of picking up everything he threw off! klp is in this thing an hour a day.

The BALL! Oh man. We have literally had this thing since day 1 of therapy. We started out with a tiny ball made for little ones. This pic was taken about a month after he came home. Yeah, no rest for the weary....PT started the week after he came home.

This has been used for LOTS of different things, head control, trunk strength, neck strength, sitting, abs, back, etc. PT Celia is great with this thing!

We eventually graduated to a bigger ball and don't use it near as much now that he can sit. We do still use it for pushing up on his arms.

I try to do the ball 2-3 times a week. I think he needs hair therapy for the nappy rat tail. A cut is on the horizon. Look how big he is on that ball!

I should've taken a picture of the bag I used to carry all of this stuff in (obviously the huge stuff stays at home)!!

Other than the gear, we have several stretching exercises for his left arm, hand, and shoulder as well as his left leg (hamstring) and knee that I try to do at least 5 times a day. I also do different "moves" on his knees or on all 4's to help him work towards crawling at least 2 times a day.

Probably our biggest physical goal is crawling. We're still pretty far from it because he has to be strong enough on both sides to hold himself up and be able to use both arms to move. He is starting to stand more (like in our laps and stuff) so we're kind of starting to do some things in therapy with him standing and playing.

It is a crazy thing because there is no beginning or end to this therapy thing. As he grows and changes, so do his exercises. There are pretty fundamental activities I do with him and tweak and change as he changes. I am often overwhelmed with this, but I know that we CAN make him better. I don't feel like I have the luxury of letting Kanyon sit in something as long as he's content because there is always some exersize or something that I need to do to "use my time wisely". I sometimes hate that, but maybe one day I'll have a full term healthy baby that is as laid back as Kanyon and I'll let them chill as long as they want in a bouncy seat or whatever makes them happy! We have been told from the very beginning that the more we do the better he will get. It is amazing what all goes into child development, but even more so when things got off to a rough start. Our goal as parents is to give Kanyon every single chance that we can to be big and strong. We shoot for "normal" but at the same time we realize life isn't all about running and playing sports. We've really had a crash course in instilling in your kids (and ourselves) the things that REALLY matter. I could talk a lot about this.

I am proud of Kanyon every single day. Nothing is easy and there is NEVER a break for him. I would give anything to make everything better so that we don't have to do all of this. I can't do that, but I can expose him to the things that will help him grow. We are beyond thankful for our therapists that work with him (and me). It is neat to see people's gifts being used to better my child. I'm just glad there are people out there that are SOO SMART with this stuff!!!

So there you have it! And to think I was determined to be one of those parents who wasn't going to have a bunch of JUNK with my kids! ha ha HA HA HA!!!!