Thursday, December 13, 2012


LONG day.

Left the house at 6:30 AM and arrived at Children's Hospital at 9:20. Part way through the day we switched cities so that we could make our last appointment at the Children's Hospital Sleep Study Clinic. We finished there at 5:30. Fourteen hours later we arrived home at 8:30 PM.

Missy's hearing in the ear that was patched in August has IMPROVED!! YAY. It was so much closer to the normal line. Not there, but closer.

Unfortunately, here was significant notable loss in the other ear beyond what she already had.

We are set up with appointments for the hearing aid trial.

There is much discussion about the bone graft happening in a couple months. There is decisions to be made about keeping or pulling certain teeth so we didn't set a date yet.

The CPAP is having major problems. Air leaks, poor fit, pressures not high enough, etc... All she has to do is open her mouth and she looses pressure. I believe that it was providential that Kris at the Sleep Clinic called me yesterday to see how things were going and that he was able to fit us in today. I told him I believed it was clearly providential. We'll be trying a new mask, etc... The stats were spotty. The therapy is being broken up all night long and it could be contributing to her extreme exhaustion. Tonight she goes without. There is some hesitancy to use a mask that goes over the mouth. If she ever got sick in it she could aspirate. However we have to weigh the pros and cons of her not getting proper rest and other options not working out for her. We are scheduled for another full sleep study with the CPAP this time.

In the middle of the day, God gave me a gift. Tomorrow I'll show off.
(Another gift besides the attention to Missy's trouble  - as I couldn't ask for a better gift than a little help for her. BUT this was something special that was  for no reason but love).

We came home to a house full of teenage girls playing hide and seek in the dark. They were have a blast.


Emily said...

Wow!!! Extreme exhaustion will definitely contribute to the poor girl's troubles! I am glad you got some answers today, and I hope getting a new mask will help a whole lot for Missy. My second daughter is having a sleep study in February, but her is to find out how much her swollen tonsils and adenoids are affecting her sleep.

To Foster A Life said...

Oh wow! I hope you all manage to keep up your energy and your spirits through this process. Keep up the good work ... hang in there!