Busy week ahead

Well, everything is still going okay here. Harlie is doing well. She doesn't seem to be in any pain. She's still on room air and all's well. She is getting much more active in her sleep and gets tangled in all her cords and tubes. She seems to really want to sleep on her belly, but I think the trach mask gets in her way.

This week is going to be pretty busy. We have an appointment with the anesthesia team in Norfolk tomorrow. That appointment is for them to meet her so they can be prepared for the ABR (auditory brain stem response) test that is scheduled for October 23rd.

Then on Tuesday, we meet with Harlie's nutritionist. I think the plan is to see how we can change from her 21-hour continuous feeding schedule to a more "normal" feeding schedule. A meal is called a bolus feed - and Harlie hasn't had a bolus feeding since... geez. I don't remember. Probably January.

As of right now, we don't have any appointments for Wednesday. Whew.

Then, on Thursday, we go see her cardiologist here at MCV.

On Friday, we have a follow-up appointment with her surgeon in DC so he can take a look and make sure everything is healing fine.

So, we came home from DC on Friday, then we'll have to get back in the car on Monday to go to Norfolk, then back to DC on Friday. So, for that reason I am thinking about cancelling the ABR test and the anesthesia meeting tomorrow. After thinking about it more, I just don't see the hurry in getting the ABR done. And I really think she deserves some time off, having fun, being a baby. I guess I'll sleep on it tonight and make my decision in the morning.

Well, that's about it. Hope all is well.

Take care,
Christy