I really started this blog for two purposes - #1 to document this journey, a journal if you will and #2 to raise awareness of this awful disease so we can find a cure. Soooo, I really need to do a better job.
We've had a couple of fundraising events in the last few months and of course a few doctors appointments.
Her doctors appointments have gone okay. As mentioned before we always struggle with her weight and the last few visits were no exception. It seems like the last few years, we've had this pattern where she'll gain weight for two visits, then on the third she'll have lost. I swear she's done this for the last few years, It's annoying! I think school lunch is the main culprit because she's so picky and won't eat much. I've tried to make her her lunch, but I just can't seem to make it every morning and there isn't much she'll eat that way either and I feel like she needs SOME variety. Her last appointment they weighed her and told us she'd had a good weight gain, then when she was out doing her PFT's (lung function testing) they re-weighed her for some reason and told us that she'd lost weight. Well one was obviously wrong and they said the first one (higher one) was so we of course got the spill about more calories. (literally the same thing...EVERY.TIME.) I know she hadn't lost weight. We weigh her often on our scale at home and she'd just been at her primary care doctor a week before. I know she didn't a few pounds in a week! Oh well.....
They also did her yearly labs, x-ray, glucose test and assessments at the last appointment, so it was a long one.
Her glucose came bag high and they told us she is symptomatic for CFRD (Cystic Fibrosis Related Diabetes) Basically type 1, but caused for a different reason than the regular type 1 diabetes. They told us to cut back on the carbs and give her more protein. Easier said than done with this picky child. She eats mostly carbs, which I know are bad but the kid has to eat something! So basically we have the dilemma of her eating virtually nothing or continue eating the way she does now and take the risk that she'll get CFRD. Nice.
We had our 2nd annual "Hot Diggity Dog" event to raise money for the CF Cycle for Life bike ride. Hot dog dinner and a kids bike rodeo. We had great support once again. We're so grateful for good friends and family. We may have to move the event over to the park next year because of the growth. It's been fun to do!
The bike ride was awesome this year! Much better weather than last year. Chilly in the morning and then turned out perfect. We sure appreciate our team riding with us. We know everyone is busy and has plenty of things they could be doing on a Saturday
