We heard back from the doctor regarding the x-ray of her growth plate. It appears the growth plate is still open and she will still grow, but they concluded that she is 2 years behind on her growth. We already figured that much, but it's good to know that she will for sure grow some more even if it's behind schedule.
We also started testing her blood sugars for about 4 days this last week and they were okay for the most part. Interestingly enough, they went low (into the 50's) twice last Sunday. Both times were just one hour after she ate, which is weird. She was supposed to test 2 hours after she ate but both times she complained about being dizzy so I told her to test and sure enough: Low. She was fine the rest of the week and never went about 182. We were told to call if it was about 200, so so far so good on that. They weren't quite as concerned about it being low and obviously we just need to give her some juice or something to quickly get her sugar levels normal again. I say interestingly enough because he has complained about being dizzy off and on for about 2 years now and I'm sure this is why. We suspected it already and we have addressed it with her doctors, which is why we are watching her so closely. Along with the results of her last 4 hour glucose test, she is definitely symptomatic. We are still just trying to get her to eat more protein and less sugar, but once again is very hard with such a picky gal! :)
Sunday, March 22, 2015
Thursday, March 12, 2015
Appointment Update
We had another checkup yesterday. It was pretty routine and very quick. Everything went fairly well. They were happy with her weight gain, but are concerned about her growth. Her percentile has steadily been falling over the last year. She just isn't growing as fast as she should. She's only in the 4th percentile now and was probably a whopping 10-15 % last year. :) They were concerned enough that they ordered a x-ray to check her bone age at her growth plate. We haven't heard back yet, so we'll see what they say. Hopefully she's just slower and will have a growth spurt, but considering that her dad had similar issues, I'm not so sure.
We were out of there in record time, just over an hour. She looked so good in all areas besides her height that there wasn't much to talk about.
On the way home they ended up calling us and told us they were ordering us a glucometer and want us to check her blood sugar once a month for a about a week at a time. Before eating and two hours after all meals. Her blood sugar levels must have been more concerning than they originally told us from her last glucose testing in January. We are supposed to call if her levels go below or above a certain point. It's starting to make me a little nervous. We really need her to stop eating so many Carbohydrates, but unfortunately that's about all we can get her to eat at all so it's a lose-lose either way. I have been trying to add more protein into her diet when she does eat carbs to at least balance it out a bit.
We'll have to see what happens.
We were out of there in record time, just over an hour. She looked so good in all areas besides her height that there wasn't much to talk about.
On the way home they ended up calling us and told us they were ordering us a glucometer and want us to check her blood sugar once a month for a about a week at a time. Before eating and two hours after all meals. Her blood sugar levels must have been more concerning than they originally told us from her last glucose testing in January. We are supposed to call if her levels go below or above a certain point. It's starting to make me a little nervous. We really need her to stop eating so many Carbohydrates, but unfortunately that's about all we can get her to eat at all so it's a lose-lose either way. I have been trying to add more protein into her diet when she does eat carbs to at least balance it out a bit.
We'll have to see what happens.
Friday, January 23, 2015
Update
So I realized I haven't posted since last March...yikes!
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
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
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