Thursday, June 26, 2008

Catch up

I started this post before we left for Montana, but didn't get to finish it. We are here at the Phillips Bar Diamond Ranch. Kanyon was a stud traveler..even with the 4 am start to his day, 2 plane rides, and 3 hours in the car to the house. We had an uneventful trip which we are always thankful for. We got here and have had so much fun already. We flew in to Bozeman which is where Kory's brother Clint and Sydni and their sweet Sayler live. We ate lunch with them and enjoyed that time. They will come to Lewistown tomorrow so we'll all be together. Ok...the point of this blog was to catch up on some of Kanyon's latest things because if I don't do it now, it will be lost in the Montana posts to come. For the last 2 months, posts have been mostly taken up with feeding updates, etc. So here we are catching up on a few other things:

A little mischief from Kanyon and his sock monkey.

When we got home from feeding camp we FINALLY got to see our Longview friends who we've missed so much. Here is Kanyon talking to his buddy Jack. He was born about a month after Kanyon and we think he's a pretty sweet boy. Lots of fun to be had between these 2.
Kanyon and Cooper had a nice talk at church. They really would squeal (in a very manly way) back and forth to each other. Very fun. Coop is about 9 months younger than Kanyon, but his rolly thunder thighs are a force to be reckoned with. Kanyon is quite jealous of them. Lots of fun to be had here too...and probably a little trouble too.

Cute pictures in the tub. I have had a HORRIBLE time finding a bath for Kanyon. The infant ones were fine but he outgrew them, but couldn't sit up yet, so bathing was tricky. We finally found this one (thanks Mom) and it is perfect. It gives him good support so he can sit up and splash. Sure is easier on mommy.

We got to spend a Friday night like the old Mark and Amy's. We loved hanging out with a few of our friends. It was how we spend most of our weekend nights until our world got rocked last March. It was fun and made us feel normal again. Here is Kory and Kanyon with sweet Mallory.
Kanyon FINALLY got to meet Erin. He loved her very much. He's begging me to take him to see her in a couple of weeks.

One of my ACU friends is a NICU nurse in Dallas and therefore understands the germ situation we're in. She and here new little cute man came to see us at feeding camp and gave us this GREAT sign for Kanyon's carrier. He thinks its the greatest toy in the world and I think its great because then I don't have to say it (hopefully). Thanks Abbe and Avery!!

Eating his boots..yummy
"SSSSssssssss" he makes that sound a LOT. My cute little snake.
He can eat his toes!!! This is pretty new...and a good step in his development. I know its not a big deal, but in our world it is.
We had to go back to Dallas for some evaluations and we stayed with Paul and Katie. Paul and Kanyon hung out while me, Katie, and Kasey ran to Sonic. They are good friends!

Kanyon made his first trip to CDR!! He'd been before but it was in the fall when camp wasn't really happening. The weather was beyond PERFECT and it was so good to take him to such a great place. He's already excited to be a Pee Wee in just 4 short years!

Uncle Clay and Kanyon playing at camp.
Cute picture of him loving on his grandmommy. He loves hair, can you tell??
Melissa gave this to me at church a couple of weeks ago and I love it! How perfect for this man!

And the best news is, he is deserving of this award. He hasn't had to use his tube on a week and is doing so good. Thankful doesn't even begin to express how we feel. His tube came out today and we're going to give his face and nose a break for a while and see how he does. It is so good to see his face without all that tape. Maybe it can stay that way.
We went to the Dr. for 15th month check up and Dr. Chris was so pleased with Kanyon. He weighed 17 lbs. 14 oz!!! He had gained 3 lbs since March!!! He is back on the charts (the preemie charts, but that is where he's supposed to be til he's 2). He is 25th percentile on weight and 60th on length.
The last couple of weeks has brought some pretty big victories for Kan. He is a chatter box and making all kinds of new sounds. He can FINALLY roll from tummy to back. It still isn't easy and he usually only can do it to one side, but he's doing it more and more. His tummy time is so much better now because he's getting better propping himself up. I guess his trunk is getting stronger!! He is also very very very very close to sitting up all by himself. I'm not sure at what point to you say, "yes, he can sit up" but he can sit up for maybe 45 seconds all by himself even without the braces. He's just so much more stable than he was before. Seeing this kind of progress is so great. He works so hard to do even the tiniest of things and we are just so proud. Now that he's eating and getting good fuel, he'll hopefully keep growing and developing faster and faster. Along with the fuel for development comes a BUSY BUSY BUSY little boy. He is all over the place all the time. If he could run he'd run all day. He sleeps his mornings away, but then is up all day with only a cat nap here and there while we hold him up after he eats. He goes to bed after his 11pm feeding and sleeps great. Needless to say, my job as mommy is very different these days. I'm having to do lots more entertaining and keeping up! I am thrilled to be busy with a busy boy. I finally, after 15 months, feel like I don' t have a newborn anymore. Not that newborn is bad, this has just been a long time to have one. I was ready for the change in stage. I just feel so proud of him and so thankful for each new thing that we see. It is hard to explain what it is like to wait and wonder if or when the "next" thing will happen. So with each "next" thing we thank GOD and pray for the next one to come too.
If you've stuck through this post, you deserve a Good Blog Reader ribbon....I don't think they make those, so I'll just say thanks! We're off to check on the boys working. They put in long days! I'll have lots of great pics to post when we get back. Have a good week.

Wednesday, June 25, 2008

Hair Vote & This Little Piggy

As all of our blog buddies know, Kanyon has been sporting a pretty sweet spike since his shunt surgery last July. The incision from that surgery was massive and I remember thinking that Kanyon would probably have a bald spot where that scar was. Boy was I ever wrong. We got more than we could've ever imagined. Instead of zapping the hair growth, the scar proved to be fertilizer-like and has been growing hair at an insane rate ever since. Here we are almost a year later and a lot has changed. Kanyon now has fuzz like hair on the rest of his head instead of just being bald and the spike has evolved--it has lost its spiky-ness. It is TOO LONG!! That is where you come in. I have no idea what to do with it....(and no, cutting it is not an option). We have a few looks that we're working on with the spike, but I thought I'd give our blog friends a chance to cast a vote for the best style. It is kind of hard to get a good picture of them all, but I did the best I could. So, comment and cast your vote.

1. The Traditional Spike. It is hard to come by these days. We only get it if Kan has had a crazy night's sleep or something...but here's a picture just for kicks.

2. The Dairy Queen Ice Cream Cone. The swirl like shape gives it this name, and the natural curl makes it easy-just gather the spike and twirl it down.
3. The Blade. Kanyon just found this one on his own at Paul and Kaite's. He was eating his hands and they were all slobbery, then he started playing with his hair and ended up with a "sharp" look. Pardon the dirt on the face, it is left over sticky stuff from when we switched the tube to the other side.
4. Fluff. This one is what it usually looks like if nothing is done. I am afraid it's a little on the whispy, feathery, 80's bangs side.
5. The Comb-Over. This seems to be Kory's favorite because he always does it to him. We just lay it over and go for the neat, parted, headed to Sunday School look.
This is a better view of the actual comb-over part. I mean is he too young to have a comb over?

This Little Piggy

Kanyon has developed a love for pigs. It all started with this pig. The therapists had it at Our Children's House and it seemed like he really liked it more than any other toy. It sang a cute song and sneezed, it was fun.

Before we went inpatient, we went over to visit my friend Kelly and her little girl Anna Lee. Anna Lee had this barn that held all kids of different farm animals. I had not told Kelly about the pig at the hospital yet. Kelly was in there playing with Kanyon and she said, "Jaymie, he LOVES this pig!" Sure enough, he would pick it up every time and was SO very interested in it and the oinking sound it made. Here he is with pig #2 and Kelly.
I think this one is the most unbelievable. He is currently obsessed with this toy. It is a barn that has a chicken, horse, and pig hanging from it. It sings songs and makes the animal noises. Every single time I hand it to Kanyon, he moves and grabs until he's holding the pig. NO KIDDING! He will grab the horse or the chicken and then drop them and get the pig. Sometimes he just stares at it:
And he almost always ends up eating it. We'll be riding in the car and I'll look back and see his little hands holding the pig tight. Every single time.
Because he loved Anna Lee's animals so much, they got Kanyon a barn similar to hers. It is filled with animals and of course he ALWAYS chooses the pig. I'll put several in front of him and he reaches for the pig.

Very appropriate for the was one of his eating camp tshirts.

The only thing I can come up with is that maybe he's going to really like bacon. Or maybe he likes pink...I'll keep it manly and go with the bacon thing.

My next post will either be from Montana or after we get back. We leave Sat. morning at 5:55 (yuck!) We are very excited to get there and see our Montana loves!!

Tuesday, June 17, 2008

Famous Preemies

Ok, so I'm taking a different route here with this post. A friend let me borrow this Preemie book when my babies were born. It was really helpful and interesting. I'm just now making it all the way through it (it's big) and the last section was very cool. It's called "I was a Preemie, Too" and it is info about famous people who were born premature. So, sit back and enjoy (or be bored by) these tid bits. Maybe it will help you in some random trivia game someday. I will shorten them and I won't do them all.

Mark Twain -Born 2 months premature in 1835, he didn't appear fit to grow up. "A lady came in one day," his mother wrote later, "and said, 'You don't expect to raise that babe do you.' I said I would try..."

Albert Einstein (1879-1955)-he said "I sometimes ask myself how it came about that I was the one to develop the theory of relativity. The reason, I think, is that a normal adult never stops to think about problems of space and time. These are things which he thought about as a child. But my intellectual development was slower, as a result of which I began to wonder about space and time only when I had grown up."

Willie Shoemaker (1931- )-Famous American jockey. Shoemaker was born too early and too small, but he didn't grow much afterward, either. In his 42 year career, he's won 11 Triple Crown horse races and earned more than $123 million is prize money. It is said that his grandmother put him in a shoebox next to an oven to keep him alive the night he was born.

Stevie Wonder-Wonder was among thousands of preemies, who in the 40s and 50s were blinded by ROP (retinopothy of prematurity)...[kanyon had ROP, but now they have surgery to prevent blindess].

Patrick Bouvier Kennedy (1963)- The 3rd child of Jaqueline and John F. Kennedy was born at 34 weeks and died only 2 days later of RDS (respiratory distress syndrome), one of the most common complications of prematurity [both of ours had it]. The loss of the first family's baby deeply moved the nation and led to an outpouring of public and private resources for research and special newborn care units. Thanks to that support and the new treatments that followed, the lives of today's 34 weekers are not at risk for RDS.

The following list is "alleged preemies": Napoleon Bonaparte, Charles Darwin, Victor Hugo, Richard Simmons, and Michael J. Fox.

Ok now for a few pictures of my favorite preemie since you sat through all of that.

big boy in his exersaucer. I think it has officially gone from a torture chamber/therapy tool to a toy that he enjoys!

We went over to my Aunt and Uncle's house Sun. night and had a great time. Kanyon hung out with Uncle Steve like this for a long time.
Of course once Aunt Mary Lynn fed everyone, she took her turn with Kan.
We might have to move to Vegas so that Kanyon can pursue his Elvis career. He has started making the weirdest faces. He's getting 2 new teeth and I think he's trying to grind them (oh goody), but I'm not sure. Whatever it is is pretty funny.

Thank ya-thank ya very much.

Thursday, June 12, 2008

Merry Maids and Super Nanny

Merry Maids= me and my mom
Super Nanny= my mom

Kanyon and I made it home Tuesday afternoon in time to feed him at 3. We were so glad to see our home! Being back with Ollie was fun, but being back with Daddy was the BEST! What was the worst, you ask? The condition of my house. Don't get me wrong, Kory picked up, made the bed, etc. But it was in serious need of vacuuming, sweeping, mopping, dusting, not to mention the CAR FULL of STUFF that I had to get unpacked, laundry, laundry, laundry, getting all of our pump and equipment set up as well as all the new supplies with the tube, meds, etc. I put in a call to my Life mom. She came down last night and we hit it hard this morning. We were MERRY MAIDS ALL DAY LONG and Mom was SUPER NANNY with Kanyon. It was so nice to not have to stop. If I was feeding, she was working..if she was feeding, I was working. It was so great! We even stayed on task which is quite an accomplishment for us two! Things are getting settled and I am so glad. We have a busy couple of weeks coming up and I would've NEVER been able to get things done by myself. This feeding regiment is quite time consuming. Speaking of, we've had 2 tubes come out (one while we were still at Kasey's so Kase and Chelsea had to hold him down for me) and one the next night here. It was a minor disaster thanks to me...I messed up. But we got it straight. Now I will just go insane making sure he doesn't rub it out or pull it out. It is really going to drive me coo coo.

Found a few pics from before we left: The sun shines through our sky light and is quite blinding. Kory decided to wear my shades..notice Kanyon is covered with a blanket.

I took these today. He has found himself in the mirror. I am completely entertained by this!

My cousin Robin got married in May! Welcome to the Spencer Clan Jeff! We couldn't get the bandanna away for a picture.

We got it out and he ate his overalls instead.

We were deep in conversation here. All he cared about was my hair.

I have no idea what he's cutting his eyes at, but it looks sneaky.

The reception was beautiful and had very tasty food. Kanyon's favorite treat was the table cloth!

Here we are all together. How many years do you think it will be before we get EVERYONE looking at the camera!?

This is Kanyon and Anna Lee when they first met. She was so nice to try and share her ice. And she shared her bouncy seat (and pink blanket). What a very very sweet girl.

Kanyon has a new love...PIGS. No joke. Here he is with Kelly eating one of Anna Lee's pigs.

Just for fun...this time last year almost to the day, Kanyon wore his first pair of pants. I just saw that hat in his drawer today and it is TINY! Oh man.

Happy Weekend!

Monday, June 9, 2008

Let the Credits Roll

Feeding Camp is OVER!!! (for now at least) We left the hospital today late afternoon and said goodbye to our Feeding Camp friends. We will actually continue outpatient therapy with them 2 times a week, so we are not gone for good. I really like that idea (though it involves spending a night a week in Dallas) so that we will get followed as we continue this whole thing. We will have next week off and then will hopefully have our schedule set up to start outpatient speech and occupational theraphy the next week. But, I have a few (or a bunch of) pictures from the last few days.

Aunt Nancye brought over Cousins Chay and Morgan to visit. What a fun surprise! Kanyon was very glad to have a manly cousin there to give him a break from all these GIRLS!!

I took a self photo. I felt like I had kind of described our little time together..just me and him.

This is his great friend Anna Lee Litton. They are SUCH good friends!

Me and Kelly with each other's kids.

Cute pic with Paw Paw when he came to visit this weekend.

OK, love these next pictures. When he has his braces on he can sit up so much 47 seconds better!! He looks like such a big boy.

Here he is with his occupational therapist. Parents don't go with them, but there is a huge window so you can watch. We really liked our therapists!

When we go outside and the wind blows, this is the face he makes. I think its funny.
My parent watched Kanyon so Kory and I could go eat for our anniversary that was last week. This is what went on while I was gone. Looks like fun!
Kanyon is taking his bouncy seat to a whole new level. Trick bouncing. This is his new favorite way to sit.
Little show-off
I just thought he looked like such a big boy after his bath the other night.

Cousin John David and Shelly came by to say hello!

Kasey is forcing me to post this. I am completely embarassed at how I look. Today I thought I'd try to do what all babies and kids do....close your eyes and maybe it will go away. I thought maybe if I closed my eyes, he would open his mouth. It did NOT work.
In true Crazy Kasey form, she got Kanyon a bubble generator! We played with it when we got back here this afternoon. Though he looks indifferent in the pictures, he loved it and would follow the bubbles until the popped. I am just so glad he can see them! What a fun toy!

He looks a little demonic in the pics with the red-eye.

We are still in Dallas for tonight. By the time we got checked out and back to Kasey's to get all of my stuff, it was peak traffic time. We are going to spend the night here and leave in the morning. Kory liked that idea too because he said that he has some cleaning to do. So ends Kory's bachelor days.

We are glad to be gone, but have a new adventure with all of this at home. I feel comfortable with the tube and all of the gear and supplies that goes with it, but hope that we can be off of it soon. Maybe in the next 4 weeks, that is kind of our goal. It is hard to explain how things are now. His therapist was pleased with his eating progress and feels confident that he will get it down even better. The hard thing to explain is that this doesn't mean he looks like a normal baby eating or will ever look like that. It still get pretty "ugly" at times, but we just have to get it done. We are probably in for a long term thing here with this eating each time we trasition to the next step. And of coure, they fully expect us to re-join them at Our Children's House in the future. We are just thankful to have them. It is still a long process from start to finish...can be as lnog as an hour by the time it is all said and done. But that is Ok. We know that and will deal with it. Some friends led me to a blog of a parent whose child is in "feeding school" as they call it. It is a different situation because of his age, etc., but I saw something on their blog that made total sense to me and might better put into words what I'm trying to say. Remember, this is not from my blog, just a blog of a total stranger, but one that made a lot of sense to me.

One of ____ best friends in Feeding Camp graduated yesterday. .
Yesterday, the social worker called all the parents together for a meeting. The social worker began the session by directing a question at the mother of the graduating kid: “What about leaving the clinic makes you nervous?” The mother was quick to answer: “I’m anxious that all my friends are gonna think that everything is okay and normal now that we’ve done this feeding camp. Everything is not okay and not normal. I’ve still got to follow this extreme process when feeding my child. And so they aren’t going to understand when I have to stay home to follow through with this rigorous feeding schedule. And the other thing I’m anxious about are the dumb questions I’m sure to get again like, ‘Can’t you just let your kid go hungry? Surely your kid will eat when he/she is hungry. Your kid is three! They need to be eating chew-able foods!’ I’m not so sure I have the patience to deal with those questions.”
As she was saying these things, every parent in the room was nodding their heads in agreement
I completely understand where this mom is coming from...because our "feeding camp," while not in the hospital anymore, is not over. We still have a ways to go in Longview and with visits to Dallas. I am worried about this sounding rude or impatient, and that is not what I intended....its just meant to explain a little bit of what goes on in the brain of parents that deal with this. posts will get shorter I promise.