Emily Update

I jokingly texted my friend Laura this morning that we probably wouldn't get Emily's test results today because that's how things seem to roll...and wouldn't ya know, we got no test results today. When Mayo says "end of the month," they apparently mean 11:59 pm on Monday night. Jeesh.

We did spend 40 minutes with the GI doctor, who has sufficiently prepared me for the test being positive. We discussed again all of the things she wanted me to know (we will need to go somewhere else for treatment at least initially, tacrolimus is the drug she will go on, the drug completely suppresses the immune system and she'll basically have to live in a bubble the rest of her childhood, etc).

At this point, she believes we will have caught the disease early enough in its process that the terrible end of the spectrum (organ transplants) will hopefully never be a reality for us. Being that it is an autoimmune disease though, the reality is that going into and coming out of remission will be what we do from here on out.

I have to put her on a - get this - formula ONLY diet for the weekend (yay me! This should go really well!), as her diarrhea is really out of control and we need to give her gut a rest. The term for this is parenteral nutrition but the doctor is allowing us to try to get her to take it orally versus intravenously. (Did I say yay yet?)

Today she hit a wall of sorts. In Costco, she developed a fever and appears to be in the throes of another migraine. She's refusing to eat and is lethargic. I cannot - CANNOT - believe it has taken this long to get any kind of answer for my kid. Prayers right now are for the lab tech to please get things wrapped up and the lab sent back before this mama completely loses her mind.