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.

15 comments:

erin f. said...

Ohhh my goodness that all sounds so frustrating about having to share a room and Kanyon regressing. I hate that so much, it just seems like it is time for you guys to catch a break and for things to start getting much better. That is what I am praying for, for a major turn in all of this! Thanks for posting an update, I check blogs like I check the clock at work! Hehe. Love you guys.

Sydni said...

Oh, MAN! I really wish they'd let you guys stay in your own room. SHEESH! I'm sure they're doing their best... ... but, ARGH!

I have been in your shoes on the snoring thing and know that it is EXTREMELY TORTUROUS! My Grandma (may she rest in peace) did that to me one night in a hotel room and I thought I'd rather get mugged, etc. in the car in the hotel parking lot than lie there.

The T-shirts continue to just totally kill me. I'm so glad you have them hanging up now so they can all be seen at all times. They're just too much.

I'm also REALLY glad you went to CDR! I could NEVER handle everything you go through as well as you do and I think it couldn't have been better for you to get away for just a little bit.

Thank you so much for the updates and PLEASE keep us posted on everything. We so desperately want things to improve with all of this!

Anonymous said...

We are sending lots of love and prayers your direction. We will pray for strength for you and Kory, and especially for Kanyon to get a huge appetite!!!

Love, Mark and Jana Hanner

Anonymous said...

Dear Jaymie.....I'm so sorry that Kanyon had such a difficult weekend. Our prayers will be for the medicine to work and for Kanyon to LOVE that bottle!! I love the picture of you & Kanyon sitting in the chair.....what a sweet boy with his hands folded.

Hang in there dear one......this will get better. One day soon you and Kanyon will be back home with Kory and the 3 of you will be spending your nights and mornings together! We love you guys......some of your Montana friends (Eldon & Marilyn)

tleaf10 said...

Thanks so much for letting me come and meet Kanyon. He really is a great boy and cuter than you can see in pictures. I loved it!

Anonymous said...

Jaymie,
Your boy is just the most precious baby! He has grown so much. Look at those sturdy, strong legs and arms. And that precious little smile. He's just too cute. I'm so sorry for the 'trouble' that yall have had. I think that the snoring would have done me in. (Although, I have to admit to being an offender, also.) Yall hang in there. I just know that he is going to snap to and catch on to this feeding business. God bless yall. Vicky Pruitt

Anonymous said...

Jaymie,
Your boy is just the most precious baby! He has grown so much. Look at those sturdy, strong legs and arms. And that precious little smile. He's just too cute. I'm so sorry for the 'trouble' that yall have had. I think that the snoring would have done me in. (Although, I have to admit to being an offender, also.) Yall hang in there. I just know that he is going to snap to and catch on to this feeding business. God bless yall. Vicky Pruitt

Marianne said...

Jaymie,

Oh my goodness, what a miserable weekend. Bless you all. Glad you are still at Our House. Hope and pray they get you into the GI doctor soon. I just wish we could all convey to him, we that love to eat, just how good biscuits and gravy are!!!

Hang in there, sweetie. I am praying that God give you an extra, extra measure of patience and faith for the week ahead.

Love you!!!

The McCarter Family said...

Oh, Jaymie! I hate, hate, hate that yall are having to go through all of this! Just keep reminding yourself that God's timing is perfect. It is so hard to "let go and let Him" sometimes, but what other choice do you have in times like these!? Amoung all your hard times, you are still so positive! You amaze me girl! Hang in there and know we are praying!

Kendra said...

Jaymie - I just checked in to see how you guys are doing. I'm SO SORRY this time is not only hard because you are away from home, but all the JUNK of the weekend on top of that . . .yuck. I'll be praying harder for you guys for sure. I really want to come your way to meet you and the little guy I've been praying for for so long . .we'll see if I can get over there!! Blessings . .

linda ford said...

Jaymie: It was so good seeing you at CDR. I'm sorry Kanyon had such a tough time while you were gone.

We are praying for that little guy and you and Kory as well.

Love, Linda

Molly Woodall said...

OH MY...as if having a baby that is on a BABY schedule wasn't hard enough, I would have totally LOST it with "grandma". She was really doing her granddaughter a LOT of good wasn't she?
Please know that we are praying hard for you ALL and praying even harder that you don't have to share a room this weekend!
Love you 3!

The Speck family said...

Oh my word, your little guy is absolutely ADORABLE!!! I wish I could come visit you and sit and chat for hours because we have BEEN where you are with Bennett and I am with you in spirit and prayer. In fact, eating is still an issue for us (and probably always will be), and I just never knew I could worry so much and lose so much sleep over such a thing- I just thought that babies ate..... anyway, you are AMAZING and keep persevering- it WILL get better, I promise! Love, Kelly S.

Unknown said...

Jaymie,
I was just looking over some notes from one of Jerry's old sermons. Something about faith being like a muscle--the more one uses it the stronger it gets.
May God's grace see you through these growing pains!
My favorite picture is the night owl! Kanyon is so precious!
Love and prayers,
Karol Edwards
For who, Lord, is God except You?
Who but You is a solid rock?
You arm me with strength through the power of Your word,
and you make my way perfect.
You make me as surefooted as a deer,
enabling me to stand on mountain heights.
You train my hands for battle against the evil one;
you strengthen me through your word and your Spirit in prayer.
You have give me your shield of faith for victory.
Your right hand supports me;
your mercy has redeemed me from despair.
based on Psalms 18:31-35

Chris and Becky said...

KANYON LOOKS GREAT. HE'S SUCH A BIG BOY. WE PRAY FOR YOU GUYS A LOT, IT'S HARD NOT BEING AT HOME. YOU HAVE TO BE FLEXIBLE BUT EVERYONE HAS THEIR LIMIT, THAT'S WHERE GOD KICKS IN. THE SNOREING LADY PROBLEM. GIRL, I'VE BEEN THERE. WE WERE AT A CAMP FOR MISSIONARIES AND 6 OR 7 WOMEN THAT I CONSIDER TO BE MY AUNTS WERE ALL SAWING LOGS AND I COULDN'T SLEEP. THE SECOND NIGHT I COLLECTED ALL OF THEIR SHOES AND WHEN I WOULD WAKE UP WITH THEIR SNORTS I WOULD THROW SHOES THAT WOULD HIT THE BUNKS AND WALL AND WAKE EVERYONE UP. AND I WOULD GO TO SLEEP AGAIN BEFORE THEY SNORED. IT WAS A LONG NITE. SO NEXT TIME YOU SHARE A ROOM TAKE SOME EXTRA SHOES WITH YOU! WE DO MISS YOU AROUND HERE. SEE YA SOON - LOVE BECKY

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