Saturday, April 4, 2009

9 Weeks: "My life is getting a little more life-like"

This is the first week we have not had to go back to Boston and avoiding the medical management is a major step toward normalcy. Emily went to one class a day at school (Advanced Chemistry), and was tutored in the rest of her classes. The work load has been a lot, and although she has felt a little overwhelmed, she has worked hard and knows that at least a couple of her courses will get done in June and the rest will get caught up by September.

She has been going to cardiac rehab at the Glens Falls hospital, where she is the only teenager they've ever seen there. She's quite a hit with the seniors, and they gasp when they see how flexible she is. The exercise does tire her out though, which points out the need for this activity. We don't know how much is due to the de-conditioning over the past year, the surgery, or the underlying mitochondrial condition that still effects all her muscles but her heart.

The nausea that has so tortured her for the past month is partially abated, and she has been eating better. We look with dread to going back to Boston on Tuesday. The biopsy would be bad enough, but after that she is slated to have another IV Immunoglobulin treatment. That is the treatment that made her very sick three weeks ago. They will try a new formulation and hope that it won't be as bad. We also hope that her blood will not show any more antibodies to the donor heart so that she won't have to go through this again.

Deb and I have been trying to get back to work. We think that our stopping work in January may be responsible for the downturn in the global economy, so we clearly need to fix that.


Joelle said...

Praying the IV treatment goes better this time around and that the biopsy is good!!

Still thinking of you often really are an amazing young lady!!!

Sending lots of strength your way!!

Jolene said...

We were thinking about you today. Looking forward to next Monday.
Jolene & Jerry

Coach Kristi said...

Emily ~ I hope your treatment went as smoothly as possible and that you're resting and comfortable. You never cease to amaze me.

Coach Kristi