Wednesday, May 28, 2008

Whats Up at Feeding Camp=long post

Here we are to update everyone on our little life at feeding camp. We had a pretty good week last week, but everything went haywire this weekend. It started with them moving us upstairs for the weekend because of "staffing". That was annoying because we had to share a room. We shared a room with a little 3 1/2 year old girl so as you can imagine, it was crazy. She was fine and didn't do anything wrong, but we are an infant on an infant schedule and she is not. It was very very very frustrating. We spent most of the weekend out of the room in the hall or in a waiting room down the hall. It was very annoying. And poor Kory had the worst of it. He stayed with him Saturday night so I could go to CDR for the 50th anniversary. Kanyon was up and down all night (which is unusual) and since there was a mom and another kid sleeping in the room, Kory spent the night in the waiting room in a chair and eventually on the floor. On top of all of this, Kanyon started throwing up after every feeding. As you can imagine, this is not a step in the right direction. He was taking almost nothing from his bottle. Needless to say, we didn't just regress, we went all the way to the bottom. I got back around noon on Sunday afternoon feeling really really bad that all of this bad stuff happened when I was gone. Since Kory didn't have to work Monday we had an extra day with him. I stayed at the hospital Sunday night and was kept away not by my child, but by the grandmother of the girl in the room with us. She was snoring louder than anything I've EVER EVERY EVER EVER heard. I mean EVER. I absolutely couldn't even believe it. At one point I sat up from my junky, hard, tiny cot and said, "Are you kidding me??!!!' and didn't even wake her up enough to make her stop. I was so very annoyed. I literally didn't sleep more than an hour at a time. I would've left the room, but I was afraid Kanyon might wake up and I wouldn't hear him. Ughhh!! Tuesday morning, first thing, we got back into our room downstairs and I was so glad to be "home". Kanyon is doing a little bit better, but things are still kind of crazy. After lots of talking about poop, throw up, and how these 2 things might be being affected, we have gotten the poop thing under control and have decided that the throwing up is his reflux. It has NEVER been this bad. They said when they put in the NG tube that it make some kids' reflux worse, but nothing changed, so we thought it wasn't going to affect Kanyon. Oh not so lucky. We just don't know why it took 2 weeks to bother him. We are set to see a GI specialist in a week and a half and they are going to see if they can get that bumped up to see him sooner. We added a medicine that will hopefully help, but hasn't yet. We'll see. Right now we're just trying to get him back on track with his eating from the bottle and hoping and PRAYING that the reflux will get better. It is a bad, desperate, helpless feeling because we can't really do anything else to help him. The weekends have been bad and there have been (and are things coming up) that I have to be at, so it is hard to leave when things are so crazy. As you can guess, this has been a hard few days. I have wanted to give up more than ever before, but that isn't really an option since I can't just quit feeding him. Please pray for him, me, his therapists, and Dr. We are so glad that we're here and feel like we are in THE best place to get the things we need. On a more positive note, his OT and PT have said he's doing really great in therapy! In fact, not only did he ride the buckin' bronco (sit up) to the 8 second buzzer, he made it 10 seconds!!! Ok, this is crazy long. Thanks for keeping up with us and rooting us on....yet again! We really really really really appreciate it!

I am in a hurry so the pics are out of order.

Katie took this picture last night. Kanyon wasn't sleeping, but he was way zoned out. We loved how his hands were folded so nicely.

Fun times with girls.....again! Us girls loved it and as you can see, Kanyon enjoyed Chelsea's hair.

My little night owl.

There is a nice aquarium in our little play room/lobby area. Kanyon likes to watch the fish. When we got here, he didn't really care about it, but now he takes it very seriously.

No matter what position he's in.

Kanyon's sweet friend Anna Lee gave him this really really REALLY cool barn. She had one when we went to visit and he really liked it. She is so thoughtful. It has animals inside that make noises. It is lots of fun!

This has been the T-shirt I make Kanyon stare at for 3 hours each day to remind him of his job. Focusing particularly on the "keep it down" part.

My laundry situation isn't really normal, so Kanyon wasn't getting to wear his shirts as much as I had hoped, so I hung them up in his room. Now he can look at them and get all psyched to eat. We really LOVE them.

Saturday I went out to CDR for the 50th. It was really fun. Not only did I get to spend great time at CDR with old friends, but I got to hang with 2 of my fav little gals Avery and Roselyn. I didn't get a picture of Roselyn, we were too busy walking around (aka she pulled me wherever she wanted me to go) picking up tick tocks and playing in the dirt. This is the top of Avery's head. We had a blast with a cup of water for a very VERY long time. She was a little disturbed that my knees were dirty so she wanted to wash them. She is so nice. I wanted to pour it on her head so I did.

This is the original Spencer clan. Looks small doesn't it? It is hard to believe this is all it used to be.

While I was gone, Kory took a picture of this, one of Kanyon's favorite things. He lives to eat Kory's arm. Must be the fuzz.

Good ol' Terri came by to see us before she headed back to Searcy from CDR. Fun fun fun!

More very serious fish watching.

These 2 gals are very very very HIGH on Kanyon's favorite people list (as if you can't see that by the look on his face).

Just a little naked man.

Last week Beth and Jarod came and brought us dinner. It was so very fun!!! Kanyon has hung out with Beth before, but this was his first time to meet Jarod. We had a great great GREAT time.

When Kanyon is a famous piano player we'll have Jarod to thank for it.

Kanyon with the future Mr. and Mrs.

Wednesday, May 21, 2008

Tube Dude

Once again, this picture was not supposed to go here. Mickey and friends came to the hospital yesterday. I am a bad mom..i forgot that they were here and didn't take him, but he was asleep anyways. His PT got him a Mickey though so that was very nice. Kanyon really likes him. In fact, he's lovingly chewing his face off as I type this.

Not much new news here...Kanyon is tipping the scales at 16 lbs! Things are still moving pretty slowly, which is frustrating at times, but is to be expected. He is still off and on with the eating but is overall doing a little better. Every little bit helps, right? We have a "team meeting" tomorrow where I will sit down with all the therapists and Dr. and talk about his progress, goals, and plan from here. I may have already told you all this, but I'm too lazy to check my last blog. As I told you before, Kanyon thought that pulling his tube out was cool, so after a week with that tube the tape on in was pretty insane. He would pull something loose and we'd have to tape it..then tape over it and over it. It got out of control! He was playing in is exersaucer yesterday and accidentally pulled the tube out. It wasn't all bad because we really needed to get the tape situation under control anyways.

Here he is being a tape model. Believe it or not, he left it alone after about a day. Even all that tape didn't bother him.

He's decided that my camera is really cool..he was going after it while I was trying to take his picture.

too bad there isn't a medical equipment modeling agency...i think this picture could sell some tape.

Showing off his bottom toofies!

See, he even does the "stare off into the distance" modeling pose

Here he is with his newer tube and is much neater and we even trimed it down more last night so it is even better. He went from the grungy look to the sleek look. He pulls them both of pretty well if you ask me.

Ok, enough talking about how cute my kid that wrong? I mean, I realize there are lots of cute babies who would be great tape models. I just happen to like this one the best.
On another note, he sat up by himself several times for 7 seconds with his PT yesterday! GO KANYON!

Speaking of, its time for PT..maybe he can make it 8 seconds today!

Sunday, May 18, 2008

Week 3 Feeding Camp

The end of the week was eventful so it passed quickly. After about 2 days, Kanyon finally decided to leave the tube alone. He is still covered in crazy arrangements of tape as we attempted to keep it as tight as possible. Now we just have to keep it there because we can't get it all off without taking the tube out. The tape gets on his nerves some, but he's been good about leaving it alone. As far as eating, our main goal is to take more from the bottle. He did GREAT Wednesday, Thursday, Friday, and most of Saturday, taking a little more each day. Saturday night he decided he didn't want to take it and is doing BAD now. He's always done that....good for a while, then bad. I was hoping we were making legitimate progress at the beginning of the week, but I knew that there was a chance that it could just be "good days" and the bad days were coming. I was right. Maybe they'll get fewer and far between. I am now nervous they're going to send us home if he doesn't show progress. I know that sounds crazy, but as bad as I'm hating being away from home, I want to get this taken care of (or at least make big improvements) without having to go home and come back. I think if his progress is too slow, we'll have to take our tube and go home and work on it at home for a while. They know what they're doing, so I trust them, but I'm still hoping for good progress. We've enjoyed Daddy being here this weekend and had lots of fun visitors. Paul and Katie came over this afternoon and let me and Kory go eat together. That was fun. Thanks again Paul and Katie. In other news, my mom came to keep me company so that was fun. We moved rooms on Friday. We knew we probably would because we weren't actually in the area with the other feeding kids. We are now downstairs with the rest of the feeding kids. Its a pretty cool set up, especially for the older kids (we are the only baby right now). It is like a pod of rooms with a big playroom in the middle. They have lots of fun out there. We are in the back kind of by ourselves which is good because its more quiet for a baby but the room is teeny tiny. Oh well. We like our little space and its our new home now. We don't have a flat screen TV anymore, but that's ok...i'm just thrilled to have cable.

This first picture makes me laugh out loud. This is a toy here at OCH from the playroom. They cleaned it up and let us keep it since Kan is the only baby right now. He had the best time playing with the toys on it. It was so funny!


It is the return of my little tree frog! He was clinging to his Grandma Gay Gay as he dozed off to sleep.

This is my view of Kanyon when I"m pushing him in his kid cart. I like it.

Paige and Stacey came by Saturday and it was so great! We LOVE them and had a fun time visiting them. We can't wait to meet their baby boy coming soon...maybe on my birthday!!!

This was a very fun treat. This is a friend from high school Erin that I haven't seen in FOREVER. She has been a faithful blog reader and prayer warrior for my little man and low and behold she works here at Our Children's House as a Physical Therapist on Saturdays!! As you can see, Kanyon was so very giddy to meet her!

Speaking of of his all time fav people in the whole universe Nurse Kathy came to see us. She now works over at the Baylor NICU and came by to cuddle after she got off work. She was Kanyon's very first nurse and stuck with us the whole way through. She is a very very dear friend to the Phillips Pham.

And just when we thought the day couldn't get any better, we got to see some family. Kory's Aunt Geneva and Uncle John were in town for cousin Barrett's graduation so they (with Aunt Freida and Uncle Richard) came by to meet Kanyon. We were so glad it worked out to see them while they were in town and not having to wait until Thanksgiving!

These are Gram (Kory's mom)'s sisters and I'm thinking they were telling Kanyon some crazy stories about her. Uh Oh!!!

We enjoyed the pretty weather this afternoon. Rain or shine Kanyon always loves his bandanna.

We are gearing up for another week of this and really hoping for steps forward. We are also going to see his eye Dr. tomorrow for his follow up after his surgery. I'm anxious to see what he says.

Thursday, May 15, 2008

Pictures! Pictures! Pictures!

I didn't mean to make this picture first, but this computer is killing me. I wanted to post it because this was him last year on Mother's Day. He was at Children's in Dallas. The ones coming up with him in the red shirt are from this year's Mother's Day. This year was much better!
OK, I got my cord (and i still can't figure out how to put my text in the right place..this computer is crazy).

These pictures are from last weekend when Kory came in. We went down below the loft and had some yummy Cold Stone. This first picture of my boys was happening as I was walking to the table. I am so glad I captured this moment...they just can't help but laugh at each other!

This is Kanyon's new face. He wrinkles his nose when he smiles as if he's trying to show you a little personality!
My sweet spike boy on Mother's Day.

Ok, if he won't even look at this yummy ice cream he BELONGS AT FEEDING CAMP!
He won't eat ice cream, but all he cared about later that day was eating his Bumbo.
I mean seriously...this pic shows some of my favorite things about Kanyon: spike, eyelashes, blue eyes, ears, and little crooked foot.

Here is a cool little hot rod they give us here at the hospital. They call it a Kid Cart and it allows him to sit up big and tall with good support. The more his body feels that weight of sitting up, the better.

Here he is in his kid cart all buckled in.

Doodle came over the other day and visited us for the afternoon...we can't wait to go visit her and her little boy in the hospital when he's born!

Bath time

Here is a picture of part of our room. It is hard to get a picture. It is basically a hospital room but just decorated and painted with cute bright colors.

This is our home..the IV looking thing is the way he gets his food from the tube.

This morning was busy around here. The Mavs mascot Champ and a Mavs player (Eric Dampier I think...i can't remember his last name, and lets face it..keeping up with the Mavs hasn't been a huge priority lately.). The green thing is the bookworm from Half Price Books. Don't know why he was here. I knew they were coming so I dressed Kan in his Mavs gear (thanks again Paul and Katie). It was a hit.

No kidding Champ took Kanyon walking around for a while..he liked him. As you could see, Kanyon could care less.

Things are going OK. We are needing Kanyon to start taking more and more by mouth. We are praying he shows progress..if he does, they will keep him and keep working. If he doesn't, we can't just stay here forever, so they'd send us home on the tube and let us get better at home. I am really hoping that he will show progress...I know that means we'd be here longer, but we'd be able to get lots of help and get further down the road. So...thanks for your prayers.