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