I've been thinking a lot about cystic fibrosis lately, mostly because of a situation facing Samantha right now. Her weight has been a struggle since she was born. I think her previous doctor would talk to us about her weight at every visit. She was always too far under 50%. We moved here to North Chicago a little over a year ago and checked in with the wonderful CF team at Children's Wisconsin in nearby Milwaukee. Her first appointment she finally reached 55th percentile, the highest she has ever been. But the next 6 months she spiraled down, almost leaving the growth chart entirely. Finally, at one point, her doctor said if her weight can't go up then we'll need to start discussing other options, such as a g-tube. By the grace of God, her weight did go up at that point and stayed fairly steady the rest of 2011 just below the 50th. We were so excited!
Unfortunately, at her last appointment she grew in height and lost a little in weight, which shows that this continues to be an issue for us. She barely eats anything, and what she does like to eat tends to not be very fattening. We work so hard when she is doing well to keep her even up to the 50th that it is such a defeat when she drops. So here we are starting 2012 with the potential for a g-tube. Samantha's doctor is very concerned, and we know without a definitive change, her doctor will require it.
Those who's kids have a g-tube encourage us by explaining it's not as scary as it seems, and that it is very freeing to reduce the stress of getting those needed calories during the day. But we can't deny that we would like to avoid needing one. One of the reasons we don't want her to get one is because we think that maintaining the near 50% we've been at is good. During the last appointment, Sam didn't gain weight, so she actually "dropped" under what she had been. We know it's not great, but it's not horrible either. She had surgery this quarter and for that being the case, I still say maintaining her weight was a blessing.
Still, the concerns popped up...and the feelings of failure. Alicia sees it more than I do, or feels it more than I do, but I'm on board with the need to fix the problem, whatever that is.
New Year's Resolutions? None to speak of, except my personal ones on my other blog. But for Sam? Just to get better. Get better at treatments...get better with food intake...get better with vitamins...get better at health...get better.
Ok, CFrs...what are your resolutions?
11 months ago