Right now....Kanyon edition

I may be creating a monster here by doing a post like this because I tend to go on and on. BUT I thought it had been a while since I (for my own documenting/remembering their childhood and to keep our loved ones in the loop with what is going on with our boys) have given a full blown update!

Kanyon, our almost 4 year old, is progressing in lots of areas. We are so very very proud of him. Sometimes when I really stop and think about it, it is amazing what this boy can do considering all of the things he has to deal with.

One of the biggest things we've really seen improvement in lately is his left hand. His CP plays out with high muscle tone (that means his muscles are extra tight) on his left side and particularly in his left arm. It is pretty much in a fist all the time, but we see him try and open it more and more. He can get it partially open and though its twisted sort of backwards, he is really trying to use it. We even see him using his right hand to try and open it! For the first time in his life, he was able to get a cheeto (of course it was a cheeto) in his left hand and hold it while he ate with his right hand. This was HUGE. It took a lot of work and I haven't seen him do it again since then, but we are thrilled that he is trying to use it. We weren't sure what would come of that little left arm because it was a possibility that he would forget it was there and ignore it completely. That is not the case!! He for sure knows its there and with a little more success each time, we're hoping he'll use it more and more.

He has had a walker for several months, but is making GREAT improvements and we are using it more and more. We started taking it to church a few months ago because its a big open place with lots of long hallways. It was the best way for us to get good practice...at home as soon as he gets going, he runs into something or has to turn around. We used to have to bend down and hold his left hand on the handle as well as hold on to the walker to keep it straight. BUT now, we just have to be near to give a little tap to help with steering or sometimes we have to slow him down!! We are very excited about this progress. It is so great to see him upright and moving!! A little more work with steering and speed control and he'll be independent and cruisin' on his walker!

All of his therapy continues to go well. PT works on standing up without holding on to anything (which so far he has a record of standing for 4 seconds) as well as shifting his weight and bending down and standing back up. We are still loving Hippotherapy (horses) and he is looking like such a big boy on Kandy, his horse. He sits up so straight and tall and LOVES to trot!! He laughs so hard he can barely breathe! They are starting to use some new positions on the horse to keep the left side of his trunk/back stretched out and loose. Because of his scooting and other hemiplegic tendencies, his left side can really tighten up and further affect his symmetry. Our PT is working diligently with that and we are thinking about starting some other treatments to help with this as well. He still sees OT and Vision impairment at school (as well as another PT) and those are going well. They reinforce a lot of what PT does as well as work on developmental tasks and concentrated work with his left hand. The boys is always working, but the boys is always getting better and better!! I would give anything ANYTHING for things to come easily to Kanyon, but they don't so we are doing everything we can to help him do anything he wants to!

I'm so glad I don't have to do a "feeding therapy" update right now. He eats. Food. As in the same food we eat. When we eat it. Its awesome. He has his favorites (and Cheetos remain at the top of that list) and not favorites and still has to muster up courage to taste something new, but we'll take it!! I make smoothies for him every morning because he won't eat much at all in the mornings, so he drinks the smoothie and gets lots of full fat yogurt, fruit, spinach, flax, and juice!!! MMMMMmmmmmm!

A new favorite thing of mine is his interest in reading books!! FINALLY!!!! He has NEVER EVER EVER cared about a book and we used to celebrate when we got through 2 pages (of a tiny board book). But, for whatever reason, he's become interested. He now says, "Reeeeeee" or "booooo" and we sit and read a book! Usually more than once. And not just a little board book with 2 words per page, a real book! You can imagine my joy, being a former primary school teacher and lover of children's books. I have quite a stash and hand selected a bunch out of my stash in the attic and put them in his room when we were putting his nursery together. I didn't expect to have to wait almost 4 years to use them, but we're using them now. A current favorite is a Curious George book from Aunt Nancye his 2nd Christmas. He also loves his Daddy's sports illustrated magazine and loves finding the basketballs (or soccer, or football, or whatever sport) on each page. He's currently loving a double page picture of the OKC Thunder starters. he has torn it out of the magazine and looks at that same page all the time! haha!

He's also taken a small interest in TV/Movies. He asks for movies all the time "MooMoo" but usually only watches about 3 minutes and then moves on. Lately its been more like 10-15! :) It sounds silly to get excited about that, but its just fun to see him having fun and enjoying something like TV.

He still loves to swing outside and asks for it at least a billion times a day "vweeee" He loves his remote control car that Santa brought, as well as Quinn's that he got for his birthday. He enjoys writing "wiiieeee" so he has had lots of fun with Christmas toys he got like color wonders and aquadoodle. He still loves lights, cars, and playing with the TV remotes. He and Quinn like to stand up on the armoire right in front of the TV (yeah yeah...really good for their eyes I'm sure) and watch it. One day klp was cracking us up trying to watch a basketball game on TV. He was trying to follow the ball and when it would go behind him where he couldn't see it, he would turn around to try to find it, but he was turning ALL THE WAY around past the TV and therefore not finding the ball! :) He can still spot a basketball goal a mile away and says "babaaa". If you say, "What do you say when you slam it?" He gives an emphatic "BOOOOM!!!" He loves throwing balls and will hold out both arms (refer to above paragraph about improvement with using his left arm!) and catch it. He laughs and laughs and laughs and laughs. He is a good prayer (as in, he bows his head and folds his hands and is quiet) and squeals with excitement when he hears AMEN! Not sure why he's so excited the prayer is over! :) He has also picked up on the fact that at the table you can old hands when you pray. We didn't teach him that, but one night we went to pray and he put his arm out for me to hold. My heart melted all over the place! :) He would live in the bathtub if we'd let him. He loves playing with the water as it comes out of the spout. Q kinda cramps his style in the bathtub so we usually let him have a chance to have part of the bath by himself. He loves to lay in the water and blow bubbles. I seriously hope this boy can learn to swim. I just think it would be a disservice to him as much as he loves water for him NOT to learn to swim....we'll see. He loves sharing goldfish with Quinn in the car and hates it when Quinn stands up by the TV when he's not there. I still can't figure out why that stresses him out so bad, but it does! He has a good memory and remembers things we've told him or things he's done. He still points to the holes in our yard where Ollie lays and says "Ah Ah" and "Night Night" because A LOOOOOONG time ago I told him that is where Ollie slept. I was sitting on the couch by him the other day and he was eating Goldfish. He put one up on the armrest and it slid down and he said "liiieee" aka "slide" haha!! We're pretty sure he recognizes the route home because as soon as we turn off the main road he asks to drive. When we tell him he has to wait until we get to our street, he asks again the SECOND we turn on to our street! He likes to help me watch stop lights and when I tell him its green, he yells "GO!!!!". He loves ketchup and has become quite good at dipping with minimal mess. He loves this photo book I made him. Its nothing but pictures that I just had printed into a little spiral 5X7 book. He LOVES it and will look at it forever. He sees the picture of him with his cheetos and points to the cheetos and says "lmmm" It looks like he's sticking his tounge out but then he says "mmm".....its his "word" for eat.

Speaking of words, his language continues to grow. He can now communicate his point much better and is learning more and more words. Its a slow process, but we love when we hear him say something we haven't heard before. He has "phrases" that he says like, "I owwww _____" fill in the blank with "go" or "lmmmm" (aka to eat), "light", "vwweeee" (aka swing) if he says swing he usually follows with "ieee"(aka high...he wants to go high!). So, he's saying "I want _____" Not sure how he picked up that phrase, but he uses it often and appropriately. Otherwise his talking is one word, but it seems like he's starting to try to string more words togethe. I can usually piece it together and when we're talking to other people, he's requiring less interpretation from me! :) A minor (and kinda funny) setback is that since he got his glasses, he gets his eyes and ears mixed up!! :) Not sure what happened, but we're working on it. Haha! His talking is exciting and so important to his development. Its fun when people hear him that haven't been around him in a long time because they're so proud of him talking. He's a constant jabber of jibberish cuteness. It is the cutest sound ever and so fun to hear him having this massively long conversation and all i can say is "yeah!...Cool!!...I KNOW!!" He remembers things, people, places, and how they are all connected. He picked up a tutu at my parents house and said, "Ro!" Because Roselyn (aka Ro) had been wearing it earlier that day. Connections like that are happening all the time. I think they've been happening for a long time, but I'm so thrilled that he can communicate it to us now. His Speech Therapist from school made an interesting comment to me one time. I've always thought that Language was a weakness for Kanyon since he couldn't talk. I'd never said that outloud or even really dwelled on it. I just thought that's how things were and that was fine. Without knowing that I thought that, she said something that totally blew me away. She said, "Language is not a weakness for Kanyon. Language is his strength. He understands SO MUCH. and THAT is language." SO TRUE!! He always has understood so much more than he could say. That is receptive language. Expressive language (what you can speak) is only half of language. So she was TOTALLY right!!

The fact that he is delayed in his physical development as well as expressive language makes for an interesting situation. I've said it before, but when those 2 things are difficult, its difficult to really measure how much a kid knows. We just kind of have to watch and wait and then he'll bust out with something we have no idea how he knew it (or how long he's known it). The last few months I've become very confident in his cognition. I just KNOW that he knows things. He just can't do them or get them out of his mouth. I have no doubt that he is smart and believe that if there was a magic way to peek into his brain we would see one that he knows everything his other 3 year old friends know. BUT the realities complicate things a little bit, but that is ok.

I can't imagine overcoming what he does every day. For one, have you ever tried to scoot yourself just a few feet across the floor?? Its HARD! and that boy can keep up with the best of us . The smallest tasks are so difficult and as his mom, that is the hard thing for me. Watching him have to work so hard for things that shouldn't require work. He has one side of his body that is significantly weaker, tighter, and almost non functioning. Not to mention the brain and that side of his body don't communicate very well or very quickly. He does everything with basically one arm. ONE ARM. Try it for 30 minutes. Try simply eating with one hand. Its impossible to chase down slippery food on your plate without the other hand to help you. The very limited use of his left hand is impossibly frustrating and affects every single thing you do. There is a breakdown of communication when it comes to his brain telling his body what to do. I hate that he has to deal with that. I don't say all of this to dwell on the bad. I say it to shout from the rooftops what this boy deals with every single minute of every single day. And not just deals with, but THRIVES with!! I am so so proud of him and can't wait to see how he blows our minds for the rest of his life.

The last few months seem to have catapulted us into big boy land. We really feel like he's a big boy. I'm not sure if it was something he did or just us recognizing it. He continues to have a magnetic personality that no doubt will be his trademark his whole life. He has the most infectious, contagious laugh on the plane and no one can bring that laugh out like his Daddy. He cracks us up and breaks me down (toddler stage has been ROUGH.....enter: physical, verbal frustration mixed with a toddler temper). We feel like he is making progress when it comes to how he handles frustration, not getting his way, or hearing the word "NO". Its been an intense year and a half with his behavior. Very. Very Very. There are days when we feel like we're making progress and then days where we feel like we are in the same place we were a year and a half ago. Unfortunately, this phase, like most of the others for him, last a LOOOOOOONG time and we are by no means out of it. It consumes my thoughts because I want to so bad to teach him well, but I have no idea what I'm doing! Its so hard and is requiring more of me than I feel like I have. But its not the first time this boy has stretched me, so I figure I'll make it. :)

I really could go on and on and on. Since people other than myself are reading this I want to make sure I communicate something. When I mention things that are hard for Kanyon, things he can't do, and especially things about our situation that are frustrating or difficult, I DO NOT want to sound like I'm being negative or bitter. The realities of Kanyon's prematurity is just that to me....reality. Sure I wish none of it would've never happened and I had BOTH of my healthy twins, but we are where we are. We are not bitter, negative, or sad. Sure we have moments of these emotions (among others) but the bottom line is we KNOW we are so very blessed. We know that Kanyon has countless abilities that not everyone else has and we KNOW that we have so so so much to be thankful for. I know that there are tons of families that deal with SO MUCH MORE difficulties that we do and I don't want to sound like "woe is me". Do you get that?!! PLEASE get that. Please also get that I'm not trying to make this out like its all perfect and we handle this perfectly. I struggle with a lot of things and I mess up A LOT. I could blog about all of the tough parts of all of this and the things that are really hard for me, but that's not what this is about. We love Kanyon Luke just the way he is and I can't imagine him any other way! :) So, I absolutely CELEBRATE everything that Kanyon can do and everything that he does for me!!!!

*I'm also not going to really go back edit this carefully. It took me almost a month to get it done and not Quinn is awake and I don't have time to sit and edit. So, grammar/spelling peeps, I'M SORRY.*