As some of you might have heard, we rescheduled Reagan’s geneticist appointment…. Twice. First they had us scheduled with the wrong doctor, then the doctor cancelled her appointment!
Got all of that sorted out and finally went to the appointment yesterday. I won’t waste anymore time, so here’s the summery:
- Geneticist doesn’t think it’s likely a genetic problem or else her growth pattern would have had problems from the start, instead of falling off at around 5 months.
- She does, however, want to test for 2 specific genetic disorders: Celiac’s disease and Cystic Fibrosis (both of those disorders are linked if you aren’t familiar with them). I don’t see Celiac’s as a viable worry because she has NONE of the symtoms besides failure to thrive… and even then, she is definitely not malnourished, which is usually the cause of FTT with Celiac’s. Cystic Fibrosis does worry me though because she has had on-going respiratory problems and infections…. Very stressful diagnosis to consider.
- Lastly, the geneticist recommends we see a Immunologist (immune system specialist) because her blood work has comeback consistently with elevated Lymphocytes and low Neutrophil (both white blood cells) which usually indicates her body is fighting something, possibly an infection or something it believes is foreign (like autoimmune disorders).
- We see our primary care doctor in about a week who will schedule an appointment for us with an Immunologist and arrange a sweat-test that will determine if she is positive or negative for Cystic Fibrosis. Crossing my fingers. And toes.
Even before now, I’ve cried, I’ve worried, and I’ve felt dispair about the prospect that my baby is sick. But none of that is helpful for her, so I am moving along and I plan to take things as they come. As of right now, there is hope, so I am hopeful. I’m saving my worry/despair for if/when it’s really needed.
Oh and Reagan is doing WONDERFUL, by the way. She is now a toddler! Last week she went through a fake-cry phase that was funny and annoying at the same time. She got over it pretty quick when she didn’t get her way. Climbing the stairs (and anything else she can get her leg over) has become her newest obsession, and I’m getting lots of use out of the baby-gate!
I think it’s a good time to share some of her latest cuteness:
Super-Baby!
Super-Baby and her trusty side-kick Moo-moo take a break from crime fighting to read Blues Clues.
At the neighborhood playground this afternoon!
Going to get acquainted with the other kids :)
*I posted this update on my “family” blog too (literally, it’s for my family & hometown friends to read haha), and I already got a call from one of my closest friends back in highschool that I rarely catch up with anymore since she became an airforce cop.
She started hesitantly, saying sorry for calling out of nowhere, and she only had a minute to speak because she was on duty, but wanted to tell me that her husband has Cystic Fibrosis, and encourage me that there are answers, and there are ways to fight back. I’ve been holding strong, so I surprised myself when I totally choked up.
All of this is just too much.
Leave a comment