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!!!!

Christmas

We have had a great Christmas! Kory's work schedule worked out to where he had quite a bit of time off, so it was great! We were in Paris for most of it and had a great time. This picture is of Kanyon and Kory at Hobbs Christmas (my mom's side). Avery and Rosie would run up to Kory and he would tickle them, they laughed and ran back and did it all over again. Kanyon enjoyed it too! This picture is not supposed to be first, but it is and I am so mad at blogger. Am I doing something wrong to make it mess up my picture order????

Here are the 3 of us on Christmas morning. Me and my brothers all stayed at my parents house during all the Christmas festivities so Santa came to one house. SO FUN! Here is Kanyon with his Santa goods. Roselyn got some stickers and within minutes she lovingly placed one on my forehead.

Here are the girls playing the tickle game with Kory.

It didn't take long for Kanyon to have his Santa experience, so Mom held him and watched everyone else. Check out his massive swirl of spike hair. It is really getting cut soon.

Back to Hobbs Christmas. Kan was VERY interested in Franklin's game!

If you've ever been to my home, you know my mom is an expert malt maker. I think that's why I had friends in high school. They knew mom would make them malts. Anyways, Kanyon had a taste of my cookies and cream one. As you can see by his cookies and cream mustache, he loved it. Seriously.

After Santa festivities in Paris we headed to Gilmer to have Spencer Christmas (my dad's side). Avery gave Roselyn a fairy dress up set. She literally wore it the ENTIRE weekend. Getting her in PJ's took some convincing, but she put the wings back on as soon as she woke up. GREAT Aunt Renee decided Avery needed a pair too, so she got a pair the day after Christmas! Santa brought them both fancy shoes and Avery got this dress. She decided she was Tinkerbell.

Kanyon chillin' with Nanny Lou

Here is Roselyn, but she prefers to be called Cinderella these days.

Kanyon was very serious about helping Dad and Great Aunt Mary Lynn open presents

Kanyon and I took advantage of his therapy free week and stayed in Paris a few extra days. My parents watched him one night so I could go watch Clint and Clay play bball. Mom took this pictures while I was gone. It makes me laugh.

When Kory holds Kanyon, Kanyon wants to be as HIGH as he can be. I wish I would've caught his face in this pic. He was SOOOOO happy!

Here is another picture Mom took that night. I don't know why watching TV pictures are so funny to me.

Another one of klp and KLP's games. He puts klp over his shoulder and then moves his legs back and forth from one shoulder to the other and the little boy laughs like there's no tomorrow!

Here is Clay with his BEAUTIFUL daughter Landry. She is sooooooooooo pretty and fun.

We enjoyed a calm New Year's here just the 3 of us and then spent a fun weekend with friends relaxing and visiting. We THINK we may have gotten out of the Christmas rush HEALTHY!!!! I don't feel like i can say it for sure yet as our festivities really just ended yesterday, so before I make the call, I'll wait a few more days to make sure nothing pops up. So, I'm very proud of Kanyon and his immune system. AND so thankful for friends and family that understand and really helped us be careful over the crazy holidays!

Happy New Year!

Have-To Post

First of all, I am putting Blogger on Santa's Naughty list. It will NOT upload my pictures right and then it messes up my words. So...I have no clue what this is going to look like.

Since becoming a blogger (after I took over Rach's job on this blog) I noticed there were a few things that circulate blog word during certain seasons. Things like First day of school pics, Halloween costumes, monthly pictures of a baby's first year, Pumpkin patch pictures, and so on.....

When these times come around, I feel like I have to uphold my duty as a blogger so I "have to" post certain pictures. So here it is: Picture with Santa. Or picture of a picture with Santa. We went to see him while we were in Dallas last week for Therapy. Yes, the house arrest boy went to sit on Santa's lap. That has GOT to be the germiest place in the universe, but I did it anyways. I didn't last year but I thought we could handle it this year. I don't know if it is better or worse, but it was one of those days that it was like 20 something in Dallas so there was no one there (yes it was outside). So we got to visit with Santa for a long time. And yes, he's real.

Kanyon did just what I thought he would do. Sit there and take it all in. I would've been really shocked if he would've cried or been really smiley. He sat there at stared at everything around him and picked a little at Santa's beard. Santa was so sweet and talked to him and kissed him (it is OK if Santa's germs get on him. They can't be bad, right?) and was so patient. I love this picture of them talking.

As you can imagine, it is hard to get Christmas shopping done when I can't leave the house. Kory has been so great to watch Kanyon a few evenings and our friends Gary and Sharon kept him one afternoon so we could get some done, but it just takes me a long time ....and I don't do well alone. So, my mom met us in Dallas last week and my Aunt Nancye and Uncle Frank watched Kanyon one evening while mom and I did some super fast shopping. It was fun and I could tell Kanyon had a great time. For some reason the pic with Nancye and Morgan got erased....see, blogger is naughty. But here he is with Great Uncle Frank who is proving to be a fav of Kan's. Cousin Morgan the college girl is holding him. We got back to get him about 10:30 and she came down the stairs waking up from her nap. Oh college days. Aren't they great?

The next few are "have to" pics too. Kid by the tree. No Christmas PJ's here...but he's been rockin' his Super Man PJ's and I love it. Can you guess why I love the dark one where he's reaching for the ornament????? Look closely....yes. The alfalfa.

He is starting to use his left are A LITTLE more when he's crawling/dragging himself/sliding across the floor. Used to he would just drag it, now he's at least pulling it out and putting it in front of him.

Yes, the superman PJ's have a cape.

It's a bird.....it's a plane.....it's SUPERMAN!!!

We're headed to Paris tomorrow for all of the festivities. We will miss our Montana family!

Merry Christmas!!

Christmas Card Outtakes

Good ol' Mindi came over to take our picture the other night. Almost 300 pictures later, we figured surely we had enough to find ONE good one. BTW, she had that rapid fire mode on her camera, that's how we took so many. Anyways, here are the outtakes.....I think it will be obvious why these didn't make the cut. And we didn't even TRY to get Ollie to cooperate!


I'm still laughing at klp's lip in the first one.



klp making sure the boogie man didn't sneak up behind us

KLP lookin' a little hazy

"SAVE ME DADDY!!!!!!!!!!!!!!"

Could klp look any sadder? Is "sadder" a word? It is to me.

We were having a tough time getting klp to smile. Earlier that day, he was cracking up when KLP would blow on his fingers. So we were doing this and trying to hurry and get back to "position" It worked on some........others not so much

Tears are flowing

klp verifying that yes, I do have split ends and I need a hair cut.

Now on to the just Kanyon part. When he laughs he rocks back and forth...that is cute in person, but makes it hard to catch a good one.











Gotta love my little cross-bite crooked smile boy

"Look Mom... I'm DONE"

"I'm officially ignoring you now."

I still can't believe I have a child that has blue eyes...I was NOT expecting that. Or the light hair. Or the out of control untamed wild mustang spike turned rat tail on the side. I did expect and hope for the alfalfa.

He woke up from his nap that day with a zit. Just like in the movies...a zit on picture day. Fantastic Picasa 3 has a tool that helped me make it go away for the card picture.

I'll post the card picture later. Merry Christmas!