Thursday, January 8, 2009

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". 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!!!!


Kelli said...

Wow! It is awesome that there are so many ways for Kanyon to build up his strength - that is amazing!

I know you have heard this before, but I just think y'all are such good parents. As a teacher, I appreciate that you do so much with and for him, because there are some parents who wouldn't. It is precious to watch him grow and see how far he has come. He is amazing!

Sydni said...

This post made me want to make a spreadsheet. It is overwhelming, and helped open my eyes to some of the things you have to think about and accomplish every day. I think you're all doing such a great job!

TexasNeals said...

mercy. you are my momma hero. i loved those last couple of paragraphs. i admire so much the fact that when he's just chillin' that you decide to work w/ him b/c you want to do everything you can for him! that is dying to self, jaymie, and it makes you a momma hero. i also love what you said about instilling in our kids the things that really matter. you are a wonderful mom and kanyon is so, so blessed to have you (and kory ;).
kanyon is so stinkin cute! he has this look in his eye that makes me smile.
again, i admire you so much! thank you for sharing all of this. i think it was very interesting and i like that you are willing to share all of the every day things that must be done for him. i've done the same thing w/ suz. we do it not to get sympathy or make people feel sorry for us, but b/c it's a huge part of our lives and we want people to understand a little. so, anyway, i really appreciated it. k, i'll stop now. :)

CamMelBrown said...

Kanyon is so lucky to have parents like y'all that are so dedicated to him.

Hollee said...

Great post!

Tara said...

You guys are such an encouragement to us. What a powerful story of faith that you live everyday. I am so glad you had a good Christmas break. Kanyon is a little stud! Much love.

Silverthornes said...

Thanks for sharing! I know Kanyon is getting the best care. I had no idea all of the things that went into his therapy. I am sure you are exhausted by the end of the day. I really admire you in many ways Jaymie, always have.
Love the pictures. I guess I haven't seen Kanyon in a while. He is looking more and more grown up.

Julie said...

You are doing such a great job! I am a speech therapist and I would die to have parents work as hard as you do!!! You will be so glad you hung in WILL pay off. Praying that God continues to sustain you...

sharon said...

I am so proud of all of you!! Everyone involved in Kanyon's life is doing such an amazing job. And, you, Jaymie, are at the top of that list. Love you!

Mindi said...

Loved all the info! I'm glad that y'all had such a great "vacation" and that we got to be a part of it! Kanyon is so blessed to have a mom that is so dedicated to never giving up and wanting to make him everything that he can be.

Hilary said...

Wow you and Kanyon are both amazing!! Seeing the pictutes just brings to light how much Kanyon has grown over the last year and how much you and your husband love your son and want only the best for him :) thank you for sharing your journey with us out here in the world. I really enjoy your blog! have a great weekend and a great New year! :)

erin f. said...

You guys are a perfect example of reminding us all what really matters, and that things don't always turn out like we plan them. And I think that everyone who knows you has been impacted by all you have been through and overcome and are still overcoming in the past couple of years. You are very strong and wise and wonderful! Love you.

Holly said...

Can I just say that I admire you so much. You are so self-less with Kanyon & so many others. Even with all you have on your plate, you still take the time to encourage me...for that, I thank you & want you to know how thankful we are for you, Kory, & Kanyon. I'll say it again, I admire you! We enjoyed last night...Thursdays are quickly becoming one of our favorite nights!

Anonymous said...

wow, that is an amazing post! I would of never known there was so much out there to help little ones like this. it is just amazing what they have available.

on a different note....just kind of wondering has klp said any words yet?

mindy said...

My prayer for your sweet family this year...
"But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
Isaiah 40:31
You are doing such a great job, and God is walking the journey with you. Can't wait to see what this new year holds for Kanyon! Hugs...

Anonymous said...

Jaymie, this is Sam. Wanted to let you know that you are amazing, and so is the Magic Bullet. I got one for Christmas and I love it. Thought that might make you laugh.

You and Kory always inspire us!

Liis said...

You have helped me to realize, how much parents who have children born before time, really have to go through and I thank you for that. I also thank you for the regular updates, it is so fun to read them. Even though I don't leave a comment so often, I've read every single post. And I have to say, that you're the BEST mom for Kanyon! Keep up the great work and know that I keep you and you're sweet family in my prayers!

DCVol said...

You are amazing~ I will be refering back to this post on a regular basis :). Your therapists are awesome and YOU are the best 24-7 therapist in the world. You inspire me to keep doing what we're is so tiring some days, but Kanyon completely displays how the hard work pays off~ his strong sitting and scooting around is such an inspiration to me....not to mention his EATING! Hugs to you all.

Stephanie said...

Wow! I almost don't know what else to say. It is amazing to think and comprehend all the people you are reaching radiating the love of the Lord all the time, despite the unforseen circumstances you find yourself in. Know that Kanyon & Jayde's divine purpose of sharing the love and truth of Jesus Christ is being done, and because of that so many more people will have the opportunity of meeting your daughter. Thank you for helping me stay grounded and focused on what matters.
Many thanks,
Stephanie Boutwell

Kelly said...

Wow. You are an amazing woman!

Damon and Amy said...

I pray that I am half the mom you are when my mommy days come. You and Kory are great parents! Thanks for the insight on all of Kanyon's gear.

kyle and steph said...

Hi Jaymie,

thanks so much for posting on our blog. It's great to hear from you and I have really enjoying looking through your blog the past few days. Kanyon is so precious! He seems to have a lot of the same issues that Suzie has. It just makes them all the more precious. I am sure that you are a huge encouragement to Holly and Patrick. They are blessed to have you in their lives.

God bless!
Stephanie Sanderson

Kelly said...

I've followed your blog for awhile and am so impressed with how great Kanyon is doing. I've got a little boy with low muscle tone. It's not the same, but I can understand a little of what you're going through (we do a combo of PT, OT, and speech 3-4x/week). I also know what a great sense of pride wells up when you see even just a little progress because you know how hard he and you have worked for it. I'm convinced Kanyon's story is a blessing to so many. Keep up the great work!

PS: We called our son's braces his Storm Trooper boots. :)

Abbe said...

I want you to know you are amazing. I think it is so great that you continue to work so hard and keep a great attitude. You are an inspiration.

Amber Green said...

I second everything that was said above and appreciate you taking the time to tell all of us about your days. Kanyon is a luckly little guy to have yall as parents and i know you feel the same about him. He'll always know how much you love him and someday when he's big and strong he'll thank you for all that you've done for him.

and i'm going to make sure he gets you a dang fine nursing home! :)

Robyn said...

I had a lot to catch up on! First, his haircut looks so sharp. I love how their little necks feel right after a cut. J.J. will tell me to get the haircut box these days, when he thinks it's time. Also, everybody else wrote it already, but Kanyon is very blessed to have the mother and father he has, and that boy is such a blessing to others.