I think I can, I think I can, I think I can

I posted a status update of Facebook that we got the results back from Anabelle's latest sleep study. I didn't go to the appointment, but Kyle told me some numbers over the phone and they were awesome. 

But then I just sat down and really compared the numbers. And had to update everyone about how wonderful she is doing! 

Her previous sleep study was June 2012. Her last sleep study was December 2012. 
Here is the differences

                           JUNE          DECEMBER
Central apnea:        69               12
Mixed apnea:          24                0 (Yes, ZERO!)
Obstructive apnea:  216              2
Hypopnea:             580             38

Desaturations:        484            20

In June her oxygen saturation was 96.1% with a min of 52%. The time below 90% was 17.9%.
In December her oxygen saturation was 92% with a min of 65%. The time below 90% was 7%. 


There are more numbers listed. But these are the main (and most impressive) (oh and less confusing) numbers. 

They did say she needs to be on oxygen at night. Which she absolutely hates to the maximum. I tried to connect and get her all set up for tonight, but it's been so long it just wasn't working. There is a part for water (to have it not dry her nose out and keep it moist), but when I was connecting it and turned it on, water just shot up like a fountain. Alli was there to help me clean up though. :) 


But we are having a tech come by tomorrow to show us how to do it all again. Gotta count our lucky stars that it's been so long since we've used it that we've forgotten how to use it. 


While I'm at it...

We meet with her geneticist last week too. Nothing new. I guess he actually cancelled our appointment (forgot to tell us though) because the new tests he ran on her muscle biopsy didn't reveal anything new. And he has no answers or insight as to why what happened happened, or anything to suggests but to continue what were doing. Makes me feel so great to have put her through a muscle biopsy for that. But then again, if the news was different I would be singing a different song. 

We go to see Dr. Hall at the end of this month. She is a geneticist who has done lots and lots of AMC research and is supposedly the best around town. 


Ok. I'm not ranting and raving about how wonderful Anabelle is doing. 

AH! And Kyle took Allison to get her first haircut EVER. I'm still a little sad over it, but she looooooves it <3 font="font">

 This is her being a good. She's learned she can make funny noises with her mouth and tongue 

This is her 'Are we done yet mom?' look. I was just trying to get a picture with all of her gear, but she disagreed with the idea

 Gotta throw one in of Amelia too, just cause she's a cutie pie. 

With love, 
The Polks 
  

The small stuff

What a week. Poor Anabelle has had eight, yes, eight, appointments this week. I'll give a brief summary of the major ones.

Sleep study/back to pulmonology: We did another sleep study. It was horrible. They were trying to jam two cannulas into her little nose. One to measure the co2 output and one to give her oxygen. After several failed attempts, they just did the co2 cannula with some blow by. She was uncomfortable the entire night, was screaming every 5 minutes. Finally we both got about an hour of solid sleep after they started the blow by. We went back to the Pulmonologist. I guess they finally took it serious because we got to meet the actual doctor this time. He said her second study was better, only about 110 apneas. (Not sure if that is total or just obstuctive apneas). However, it's still dangerously high. We started her on 24/7 oxygen today, 2 liters. She hates it. I think she's warming up to it a little now though, she's sleeping! But he said we will repeat the sleep study, and if that doesn't work then try a CPAP, repeat, then if that still doesn't work we will discuss a trach. This doctor really understands what a big decision it is, and told me how we will make the decision together. Very comforting. Hopefully the oxygen works though! We will repeat the sleep study next week to see where we are. Oh, and he said if this continues long term it could lead to brain damage because she only breaths about half the time. Ah.

Physical therapy/Shriners: We had our first visit with outpatient therapy (not with Shriners). They showed us some stuff, mostly what we already know and do. We also meet met with Shriners hand specialists. She gave us some stretching excersises, and said we'll regroup in 3 months to see where we are at. But good news is Anabelles range of motion is great! She can flex her elbow's a little more then 90 degress, and extend about 30-45. She explained how Anabelle is a little backwards from typical AMC kids. I guess they usually see then with extended arms and flexed legs. But that's Anabelle! :D Nothing is 'normal' when it comes to her medical care. *sigh* But she said she is too small for splints right now, but maybe in 3 months we will try them. Also, she said she doesn't want to be too agressive because Anabelle will show us what she can do and needs help with, from there we will see what we can do to help her. She doesn't want to do something now that will damage her later.

GI: Since her reflux is still horrible, we have switched her to some RX formula. We have three to try, one a week. In three weeks we will follow up with GI and determine if anything helped and if not we will switch to a J-tube. It will help *hopefully* with the reflux, which in turn will help with her breathing. I love her GI. She doesn't fool around. She gets things done, and doesn't make us feel dumb when we have silly questions. And she has lots of energy. Maybe a little to much at times for this sleepy mom. I just pray this works!


Other than that, little Anabelle is just too cute! She smiles all the time now! And her big sister love love love her!!
Kyle and Amelia had a conversation the other day. I wasn't there so I could be misquoting.
Kyle - "You know Anabelle's special right?"
Amelia - "Yeah, like a present!"
Kyle - "Do you know what that means?"
Amelia -"Yeah, it's good!"

Melts my heart. They don't see her any different. Honestly I tear up when I just think about them together. Amelia wanted to cuddle with Ana, and actually sleep with her! Well.. I couldn't let her do that, but she just cuddled as long as she could. Ah! Got to love my kiddos. They remind me of what is important in life. <3

With love,
The Polks