Jordan seeing Dr. Frattarelli Again

Jordan is still not doing well with eating.  I'm lucky if I can get at least 2 pancakes a day in her. She has already lost about 2-3 pounds since August.  She's 20lbs 6 ozs) I took her to the doctor today because she seems to be sick again. (We were there for 3 hours) They did an xray to make sure she wasn't getting the start of pneumonia, which she's not. But he did put her on a round of antibiotics to kick out whatever's been lingering. On that note, he thinks she has an immune deficiency. We see the infectious disease (ID) doctor on the 29th.

For the eating issue he said it could be a number of things. 1st: she could have reflux and it hurts to eat (same as Nathan had) or some kids develop the fear of choking and when she swallows, it may hurt.  So now she also has to see GI and have a swallow test done with another specialist. Swallow evaluation is December 14th. As for GI, they can't get her in until Feb 21st. I'm Livid!!! She said if I have her doctor write a letter advising his concerns and fax it to them she might be able to get an earlier appointment.  I said "What? She won't eat, that's pretty concerning don't you think?" So I called doctor, and the referral lady Jan she said she would have the doctor get a letter faxed over. Now I am waiting to hear back if she can get in sooner. 

I wish my poor baby would just get better.  I hate seeing her in pain.  She doesn't deserve this.

Jordan's Sleep Study

Jordan had her sleep study overnight last night.  It was NOT what I expected.  They had her hooked up everywhere.  It was so hard to see.  They are checking to make sure her breathing doesn't slow down, or stop when she sleeps.  They say kids with Hypotonia, sometimes have issues with breathing.

Here she is before they hooked her up.  She is so tired and just wants to sleep.

The tech came in and started hooking her up.  Poor thing was so exhausted and cried so much that half way through fell asleep for the rest of the hook up.  She woke up and started screaming/crying and throwing up when they put the stuff up her nose and in her mouth (one was a recorder of some kind and the other was for oxygen.  That was the hardest part.  Poor thing could not have her pacifier and she looked so uncomfortable.  Here is out poor baby all hooked up.  It's still hard to look at this picture.  It breaks my heart.

She slept fairly OK.  Me on the other hand, I didn't get any sleep.  I kept checking on her to make sure she was pulling on any cords.  And when she was restless, the seahorse helped a lot when she heard the music.  So I would push it on every 5-10 minutes or so.  I am glad this night is over and hopefully she will not need another one.