The Countdown

The final countdown to Charlie's surgery has begun. 6 more days. I'm so nervous, excited, etc. It couldn't come soon enough. Now its to the point that even with mittens on, Charlie is still managing to pull the NG tube out partially. So now if I am not watching her, I have to swaddle her arms down so she can't get near her face. It makes me feel so bad because she HATES to be swaddled. Although after a few minutes of being really upset, she seems to calm down.

I also have been tinkering into essential oils to help calm her down. I cut some lavender oil with jojoba and have been putting it on my hands when I do anything with her and also massage her feet with it. I can tell a big difference. She slept way better last night (not as much tossing/turning) and when her teeth are bugging her, her tantrum episodes are way shorter (from an hour and a half to maybe fifteen minutes).

Her PT went fantastic yesterday. The physical therapist said she has fit a month of development into a week and is blowing her away at how fast she is progressing. Now she can roll super easily from back to front and has some awesome strength building in her neck. She tells me we may see some stalling once she has her surgery because she will be hurting for awhile but I hope she keeps marching forward like she always does.

We have a meeting with the feeding specialist during her OT today. I am anxious to see what they say about what they think is going on with her feeding. I'm lucky to get her to take 5mls and once a day we typically get a better feed of about 20-30mls. This is such a setback from where we were (she was taking about 2 ounces before) so obviously something is going on. They want another swallow study. I really hope she isn't aspirating. One more thing to worry about.

Thats pretty much it for the update. Hopefully we can get some answers soon. I cant wait to take her NG out for the last time....get that tape off her face and be able to see her entire face...been way too long.