Monday, February 16, 2009

Pics and a little medical update

Where is that boy you all came here to see???
Chillin' with his Nanny Lou

Patrick was showing Kanyon the flashlight thing on his iphone and klp LOVED it!! It was great fun. He could even change the colors on his own...Patrick is trying to talk us into an itouch for his bday!! Haha!

Mandatory bathtub Mohawk pictures:

trying to avoid the paparazzi

When he smiles he kinda smiles with his whole face!

Kanyon's form of army crawling and the carpet don't make a good pulls his pants off! He doesn't care, he just keeps on going.

cute pic with my parents...they stopped by on their way back from my mom did not go to the Freshman Social, she just borrowed my shirt. Actually....Todd, I think this is your shirt??!!! Let me know if you've been missing it the last 8 years.

A few weekends ago, my mom came and spent the night with me and klp while KLP was out of town. She got a picture of our little wake up routine. I make him kiss me through the bed before I pick him up. I just love it. It was early excuse my morningness...I feel like my hair looks like Billy Ray Cyrus.....oh well.
This picture got out of order...IMAGINE THAT ANNOYING BLOGGER!!! This was supposed to go right before the one of him with his pants completely they are on their way off

That'll do for now with the pictures...I do have a little "update" Remember how all this used to be was medical updates...well, we're gonna throw back...
We met with a couple of people last week. The first one was the Physical Medicine Dr. at Our Children's House. She is really great and I like her a lot. We hadn't seen her since we were inpatient so its been almost 9 months. Kanyon has officially learned when he's in the Dr. setting and he FREAKED out the ENTIRE TIME we were with her. I was seriously sweating trying to calm him, talk to the Dr., keep my brain to ask the questions I needed to, answer her questions, and fill out 6,000 pages of paperwork. The freak out made it a little tough for her to get a really good look at him as far as his tone, etc. but we had a great write up from our PT here that she read and she was able to see what she needed. She said he's on the right track and that we're doing all of the things we need to be doing therapy wise (I told you....we have the BEST PT in the UNIVERSE!). She thinks Scottish Rite is the place to get to the bottom of the crooked foot mystery so we'll keep up with them. She is going to X-ray his hips next week (we didn't think he could be still enough then to do it) just to make sure they're OK before we start to work on standing stuff. She also would like for him to be seen at the Scottish Rite CP clinic. We've never gotten the "official" Cerebral Palsy diagnosis, but she gave it to us. Its not that big of a deal at this point. We've always treated it like that and it really just gives it an official name. Receiving a diagnosis doesn't mean we're automatically going to get magic medicine or that things are worse or better than they were. It just is what it has always been. CP is a HUGE term that can mean lots of different things. It isn't, by name, a very definitive explanation of a person's condition because it can range so widely in severity and it can take different forms for different kids. So in some ways its TOO broad to really give information, but in other ways, it makes things less complicated to explain. The technical term for Kanyon is Left Hemiplegia Cerebral Palsy...that just means his left side is the affected side. We all knew that already. SOOO HOPEFULLY we will have access to that at Scottish Rite soon. We have an appointment with them in April so we should be able to find out more then. They just do a full body, full person treatment/equipment/different dr's and specialist/progress stop shop. We'll see.
The other person we met with was his Nutritionist at OCH. Everything was good and she have me the go ahead to go to 4 bottles a day...EVERYBODY NOW "HALLELUJAH HALLELUJAH!!!!" I've always had to wake him up in the mornings to eat and he's never eaten good and he's totally asleep then he goes back to sleep and sleeps til i wake him up again at 11....then we'd have to keep him up to feed him at 11pm so it was often times midnight before he went to bed...hence his sleeping the morning away. I just felt like he needed to sleep more and that he would eat better if he woke up on his own. She calculated his intake and we can get enough in him in 4 bottles so this means he goes to bed at a normal hour and gets to sleep!!!!!!!!!!!!!!!!!!!!!!!!!!! I feel like it is a much more healthy, age appropriate schedule and I"m so glad. So, Wed. night for the first time in his life, NO ONE WOKE HIM UP!!!! And one of the best parts is that I don't have to race to bed because its so late....I can put him down around 9:30-10 and then Kory and I can watch TV or have a little bit of time without having to entertain a baby. And maybe even go to bed at the same time...That's a novel idea!!! This has been AWESOME for me! I feel like it is SOO much better for him (and selfishly, me). Once house arrest is over, I feel like it will make it a little easier to do things in the real world since he will be up and going BEFORE noon and not staying up til midnight!! Not to mention, one less bottle to wash everyday. Have I mentioned how annoyed I am that I've been washing bottles for 2 years??!! Ha ha! Oh well, its really not a big deal, I find it kinda funny. Plus, there are way worse things. It is a GLORIOUS day for me!!!! I wanted to give the Nutritionist a big hug and a kiss, but i refrained!!!
SHEESH!! That was a long update. Sorry!


tleaf10 said...

Great to hear about the bottle change! Man, that would be rough to keep doing for very long. Kanyon looks so good and like a curious little boy! I am glad they gave you a diagnosis - just to explain it to others easier. I hope your week goes well and Kanyon adjusts great to the new routine.

erin f. said...

I have been looking everywhere for that shirt. When I saw your mom wearing it I figured I must have taken her to freshmen social and forgotten about it. Please send it to me asap. Thank you,

erin f. said...

Also (this one is erin) I am so glad that you are able to go to 4 bottles and have some more answers! I know you will be so ready for house arrest to be over!

Paige said...

Praise God for sleep. Love the hair, on both of you. Love you! Give hugs. Glad you got answers.

Hilary said...

Wow how awesome for you and Kanyon!! Great news all around!! He's just a great little guy no matter what and Daddy have done such a great job!! :)

cassi rash said...

Yeah for one less bottle a day! I know that has to be a relief and to have a little more info about Kan Man. Glad to hear he's doing so well! I've heard such amazing things about Scottish Rite.

Mindi said...

Yay for less bottles! I'm super excited for you, and Kanyon. One less fight a day is always a good thing! I know you have been waiting for SOO long to have a "normal" evening. Praise God Jaymie and Kory time!!

Holly said...

I know I said this on the phone, but YAY YAY YAY for 4 bottles!! Words just can not express how excited I am for you guys!! You deserve this and I am just going to pray hard that it works well for Kanyon. Also, LOVE the pic of you kissing him thru his crib. That is so precious. Can't wait to see you guys again soon. We've missed y'all.

DCVol said...

Congrats on the awesome feeding news! You are such a rock-star mom.....feeding is such a beast and you have tamed the beast in such amazing ways. K is adorable as always, and I look forward to hearing all about Scottish Rite. You are so right about the CP term~ it is SO broad and really just means "brain injury". Kanyon continues to be our inspiration around here!!! Love, KJS

Kyla said...

Oh Jaymie, that is AWESOME! Being able to put Kanyon to bed earlier and allow you and Kory to just chill for once in 2 years is monumental! Not to mention how great that is for Kanyon as well! You've already said that and I'm just stating the obvious...but that makes me so happy for you!!! Kanyon just keeps getting cuter. I love his mohawk. You're right, that is mandatory. We did that with Ava when her hair was shorter. So fun.

The McCarter Family said...

I'm so glad that yall's sleep/eating patterns are easier! A HUGE blessing within itself! He is getting such a cute little personality! Thanks for sharing with blogland!!!

Abbe said...

Jaymie I always intend to comment and never do. You are super mom. I am so glad that Kanyon has you to love him enough to go way beyond enough to get by. I am so glad you are finally being rewarded with some adult time and sleep! Enjoy it!