Tuesday, January 27, 2009

Jealous? Oxygen? CPAP? Hospital Grade Bed? Apnea?

Guess who we got to hang out with today after Chicken Little's appointments up at PCMC?

Don't look too close though, these came out REALLY grainy for some reason. I am sooo ashamed.....

Jackson and Lacey from Jackson's Fight!!

Oh my gosh it was like Lacey and I had known each other for ages. Lacey and I connected in a way that was just amazing. We both have the same feelings and have been through a huge mistake that should have never happened with our kids.

We had an awesome time at Red Robin, and the food was yummy. (I think we were there for like 2 hours just gabbing away.)

It was awesome.

Lacey, I think you and I need to hang out more often.

Now for an update on Chicken Little,

His Echo showed that his pulmonary pressures are high again, in the 60's. So he is back to being on oxygen 24/7.

Yippy freaking skippy.

He's been off of oxygen during the day since June, so that would be about par for his pulmonary pressures to build up again.


In case you were wondering, that Awesome was dripping with sarcasm.


Other than that Chicken Little seems to be doing really well. He's in the 95th percentile for height, and the 75th for weight. We grow em' big in Utah in case you were wondering.

For now they aren't too worried about his head banging because he CAN self soothe himself. They told me that cognitively he should be able to understand the concept of potty training right now, but I don't see any signs of him being ready right now. He was a while back then he got sick, and it never came back.

I say poo on them, because when Chicken Little is ready, Chicken Little will tell me.

I have never pushed him into anything before, and I won't push him into this. I might direct him that way, and show him what to do, but from there on out it's up to him.

That's the way Chicken Little Rolls so that's the way mommy rolls.

~Wow, I totally just admitted that Chicken Little controls me didn't I.

Shhh, don't tell.

I did however get to put in a huge plug for Signing Time up at the Down syndrome clinic though. The nurses and Dr's all came in and teamed up on me to ask me what I had done with Chicken Little to get him talking so much and so well.

I got on my Signing Time soap box and went on for about 20 min about how it has saved our little guy in his communication skills.

They asked if I could help them write up a sheet to hand to parents about what to do and when and how to start signing with their kids with Down syndrome.

I thought that was totally wicked.

Chicken Little is one awesome dude.

So. Now back to his pulmonary pressures. We know that they are rising again, and he hasn't been sleeping well through the night as of late either. So we have set up an appointment for next Thursday with his pulmonologist and we will set up another sleep study.

If he is still having apnea episodes, (which I can almost guarantee he is) then we will go back on CPAP.

We also are working on getting a hospital grade Sleep Safe Bed for Rhett since he does better with his heart rate and his sats when he is propped up while sleeping. We can't safely prop up his mattress right now without risk of him getting tangled in the bed rail and possibly suffocating.

We are crossing our fingers and toes that our insurance will cover one.

Anyhow, that's what we are up to, and now that it's almost 11am and I am neglecting my poor tired little monkey, I better get my butt off the computer.

Till next time.....


Lacey said...

it was soo much fun. We do need to get together more often. Although we did end up at the hospital till 10:00 at night. We should have snuck home with you from Red Robin

Megan NcCarterFamily said...

Well atleast you did get some good out of it. Im glad you guys had so much fun at Red Robin. A few of us from our lil twitter group. have decided we need to go to Utah for vacation.

I hope the insurance doesn't fight you on the bed, cus we all know you can kick their butt!

Travis said...

Rhett is a really good talker. Potty training I agree let rhett tell you when he is ready Mariah is almost 4 and I have been trying for a year now and I swear she doesn't have control of her blader. She is always wet even if she pees in the toilet. I don't know she is stuborn! I am glad you got to meet sweet Jaxon. It sounds like you guys have a lot in common

My Three Sons said...

That looks like a wonderful time at Red Robin. Would you believe we have a RR about 10 minutes from my house and I have never eaten there? Guess I should since you have talked about it a few times on your blog.

I saw that American Idol came to Salt Lake City. How far are you from there?

Sorry to hear about the O2 setback. I hope that maybe it is just the winter months knocking him down and he will get off of it when the weather gets better???

Sending prayers your way!

Melissa said...

I'm so glad that you two got to meet! I happen to know Lacey through the blog world & FB, she's such an inspiration to me! Mr.Rhett & your family also amaze me as well...my goodness is he a brave little hero!!!

I LOVE the new blog look BTW...sorry it took me so long to catch up!

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