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
Thursday, March 6, 2014
Appointment Update
We had another one of Kendell's routine visits down to Primary Children's Cystic Fibrosis clinic this week. We're happy to report that we had another great visit! She gained almost 3 pounds again in 3 months and looked great! Her lungs sounded clear and her PFT numbers were once again awesome! speaking of PFT's, today I realized just how blessed we really are to have her so healthy. There is a young women with CF who is in the hospital right now getting a cleanout, which consists of I.V. antibiotics and all day breathing treatments). She reported that she blew a 18 on her test, an 18! That means only 18% of her lungs are working. Kendell is always around 130. At this last appointment Kelly pointed out that although they are still high numbers, they seemed to be slowly going down over the last year or so, but it seems that this last visit they came back up a bit which we are so happy about! Although hearing about other CF patients makes us realize our blessing, it is honestly depressing too. I had a very heavy heart, when I read the comment about her hospital stay and know that anything can happen at any time....
Back to Kendell's visit:
We always have to wait for certain test results, (like her sputum to test for infection and some blood work we had to do to check her enzyme levels again) which we don't have back at this time, but we don't anticipate any issues. Her enzyme levels seem to be elevated most of the time which can mean a number of things, but is obviously not normal and needs to be controlled, so we did need to get those checked. Last time she had an ultrasound there was a little damage to the liver, which could explain the elevated numbers, or it could also be the dose of her medication which can be easily adjusted. We'll see what they say....She does have to have a follow up ultrasound next appointment, which is sooner than her yearly check so that makes me think it is something they are worried enough and are wanting to monitor levels and get it figured out so no permanent damage takes place to her liver, lungs and other organs.
In other news, we are gearing up to participate in the annual fundraising events that take place via the foundation. "Team Kendell" has such great support and we sure appreciate all our sponsors, our friends and family that help raise funds for our team, donate themselves and come participate in the events. It truly means the world to us! I know everyone has a cause that is personal to them, but we appreciate the time people put in for our cause. We are going to find a cure! Kendell has participated in a study for the past few years, where they draw extra blood to study and the nurse over the study said they are finding out so much from the study and of course they are in the process of trials for the drug Kalydeco which is VERY promising! We are excited to see what happens and pray that it happens soon.
Back to Kendell's visit:
We always have to wait for certain test results, (like her sputum to test for infection and some blood work we had to do to check her enzyme levels again) which we don't have back at this time, but we don't anticipate any issues. Her enzyme levels seem to be elevated most of the time which can mean a number of things, but is obviously not normal and needs to be controlled, so we did need to get those checked. Last time she had an ultrasound there was a little damage to the liver, which could explain the elevated numbers, or it could also be the dose of her medication which can be easily adjusted. We'll see what they say....She does have to have a follow up ultrasound next appointment, which is sooner than her yearly check so that makes me think it is something they are worried enough and are wanting to monitor levels and get it figured out so no permanent damage takes place to her liver, lungs and other organs.
In other news, we are gearing up to participate in the annual fundraising events that take place via the foundation. "Team Kendell" has such great support and we sure appreciate all our sponsors, our friends and family that help raise funds for our team, donate themselves and come participate in the events. It truly means the world to us! I know everyone has a cause that is personal to them, but we appreciate the time people put in for our cause. We are going to find a cure! Kendell has participated in a study for the past few years, where they draw extra blood to study and the nurse over the study said they are finding out so much from the study and of course they are in the process of trials for the drug Kalydeco which is VERY promising! We are excited to see what happens and pray that it happens soon.
Monday, December 16, 2013
Visit Update
We had another one of Kendell's check-ups down at Primary Children's last week and I'm happy to report that this was probably one of our best appointments that I can remember.....EVER! She had great growth and weight gain (she gained 3 pounds in 3 months), no issue with her intestines (as far as blockage), lung function is still awesome and no bacteria growing in her lungs from the culture they did! This visit we actually had the two doctors and even one of the nurses say over and over how good she looked. They thought she looked healthy and strong, (looks like that tumbling is helping :)
We are so happy about this last visit and hope she continues to do as well at the next visits! We really try to stay diligent and make sure she doesn't skip medications and treatments, but we aren't perfect so sometimes it happens. But we worked extra hard the last three months to have proof that it makes a difference to skip certain things. If there wasn't any difference then no big deal, but if there was improvement we'd know that it payed off to work even harder. Well, the proof is there and we'll be doing our best to not skip these important things.
We are so happy about this last visit and hope she continues to do as well at the next visits! We really try to stay diligent and make sure she doesn't skip medications and treatments, but we aren't perfect so sometimes it happens. But we worked extra hard the last three months to have proof that it makes a difference to skip certain things. If there wasn't any difference then no big deal, but if there was improvement we'd know that it payed off to work even harder. Well, the proof is there and we'll be doing our best to not skip these important things.
Thursday, October 3, 2013
checkup
Kendell had another one of her regular 3 month checkups a couple of weeks ago. Not too shocking but she didn't gain any weight, NOT.EVEN.AN.OUNCE! I was a little surprised, because I thought she'd been eating pretty good, but she never seems to gain much weight in the Summer so I guess I should know better by now. If she follows her past patterns, she'll have 2 or 3 bad visits then she'll have a huge weight gain and we'll all be happy for a bit.
She was due for her labs this visit and we had some weird results there. Her CBC was showing low white blood cells. They asked if she'd been sick, but she hadn't so we had to go back a week later and recheck them. That draw showed white blood cells back normal again, but low iron. We will have to go back again in a month to follow up on that but in the meantime she's been told to eat red meat, beans and dark greens like spinach. I almost laughed. This would be an awesome diet for her, but she refuses to eat all 3 of those things. I'm a little nervous about the fact that she doesn't like much meat at all right now. I wouldn't normally worry too much except a. she really needs the protein for her growth and b. she doesn't like any other iron or protein supplying foods (I may have just made up that term:)
we'll see what comes of it.....
She also saw the GI doc again this visit. He is still worried about the stool he can feel in her intestines. I'm wondering how many times they'll feel it and point it out before they actually do surgery?
Also, she's been having pains in her chest. We think possible heartburn, but he was pretty concerned about it and told us to really watch it to see if there's a food pattern. He said with the medications she's on (prevacid being one), she shouldn't be having heartburn symptoms. So not sure what to make of that, but we'll keep on eye on her like we always do....
We sure love our Kendell bugs! She's a pretty good sport with the hand she has been "dealt" in this life. Every now and then I feel sad and wish this wasn't our, reality (hers especially), but there's nothing I can do to change it and it won't do any good to dwell on the "what ifs." I just remember how grateful I am that with all things considered she is pretty darn healthy!
She was due for her labs this visit and we had some weird results there. Her CBC was showing low white blood cells. They asked if she'd been sick, but she hadn't so we had to go back a week later and recheck them. That draw showed white blood cells back normal again, but low iron. We will have to go back again in a month to follow up on that but in the meantime she's been told to eat red meat, beans and dark greens like spinach. I almost laughed. This would be an awesome diet for her, but she refuses to eat all 3 of those things. I'm a little nervous about the fact that she doesn't like much meat at all right now. I wouldn't normally worry too much except a. she really needs the protein for her growth and b. she doesn't like any other iron or protein supplying foods (I may have just made up that term:)
we'll see what comes of it.....
She also saw the GI doc again this visit. He is still worried about the stool he can feel in her intestines. I'm wondering how many times they'll feel it and point it out before they actually do surgery?
Also, she's been having pains in her chest. We think possible heartburn, but he was pretty concerned about it and told us to really watch it to see if there's a food pattern. He said with the medications she's on (prevacid being one), she shouldn't be having heartburn symptoms. So not sure what to make of that, but we'll keep on eye on her like we always do....
We sure love our Kendell bugs! She's a pretty good sport with the hand she has been "dealt" in this life. Every now and then I feel sad and wish this wasn't our, reality (hers especially), but there's nothing I can do to change it and it won't do any good to dwell on the "what ifs." I just remember how grateful I am that with all things considered she is pretty darn healthy!
Sunday, September 22, 2013
Hot Diggity Dog Event
A few years ago, Kelly really wanted to organize a bike ride that benefited Cystic Fibrosis. He started gathering some info and brainstorming on names, etc. About that time our local Cystic Fibrosis Chapter decided to hold the national Cystic Fibrosis Cycle for Life Event, the timing was perfect. We decided to put our time and efforts into helping with the chapters event. We also have a team that will ride in the event next Saturday, so in efforts to help raise money for our team we decided to hold a Hot Diggity Dog Event a few weeks ago. We sold hot dogs, had a kids bike parade and had a raffle. It was so much fun, that I think we'll do it annually. We really appreciate all the help we received and all the support from those that came to the event. We sure are blessed!
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