Friday, March 14, 2014

lab package

The package for Fiona's next labs came today. It feels a little weird to have the tubes and be carrying them to our doctor's office for the draw. Once they draw the blood I don't know if they will hand it back to me, or send it out. Either way works because Cincinnati included everything to send them back.

There are three tests. I think they are still trying to figure out where to send the fourth test. These are very unusual tests. As of 2012 one of the genes they are testing has only been confirmed in 4 patients. Knowing that Fiona is that rare is a little unsettling. They are still developing treatments for these conditions, and I want the best for my baby, not the best guess. As much as we want answers, these are things I don't want her to have.

I'm not looking forward to the blood draw. I'm thinking about putting some numbing cream on her before, and maybe premedicating with tylenol and her antianxiety meds. Most days feel pretty normal now, even treatment days, but blood draws are stressful for both of us.

Today I'm trying to focus on how fortunate we are to have a great team of doctors who came up with new ideas when the typical ones don't fit. I'm starting to understand, and process that Fiona isn't going to be diagnosed with a common immune deficiency. The uncertainty about the future for her and our family is a challenge. Not being able to plan for more than a month at a time when you have 5 other kids is crazy.

For reference for other parents they are doing ITK gene sequencing, CD 40 full sequencing type 3, and CHD 7.

No comments :

Post a Comment