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.
Monday, December 16, 2013
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!
Saturday, August 3, 2013
"65 Roses"
The rose has become a trademark symbol for Cystic Fibrosis
I thought I'd share a cute little story about how that came about.....
“65 Roses” is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce. Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary’s 4-year-old son, Richard, listened closely to his mother as she made each call. After several calls, Richard came into the room and told his Mom, “I know what you are working for.” Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, “What am I working for, Richard?” He answered, “You are working for 65 Roses.” Mary was speechless. He could not see the tears running down Mary’s cheeks as she stammered, “Yes Richard, I’m working for 65 Roses.”
Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation
I thought I'd share a cute little story about how that came about.....
“65 Roses” is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce. Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary’s 4-year-old son, Richard, listened closely to his mother as she made each call. After several calls, Richard came into the room and told his Mom, “I know what you are working for.” Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, “What am I working for, Richard?” He answered, “You are working for 65 Roses.” Mary was speechless. He could not see the tears running down Mary’s cheeks as she stammered, “Yes Richard, I’m working for 65 Roses.”
Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation
Monday, July 29, 2013
Triathlon
Triathlons don't have much to do with Cystic Fibrosis, but we think it's pretty neat that a little girl with this disease can do things like this! Kendell competed in her 2nd triathlon this last week and did a great job! Many patients with CF are on oxygen and have decreased lung function, so that even a set of stairs would have them short of breath.
We are so proud of her and the fact that she doesn't let this disease get her down. Nobody there watching (with the exception of her family) knew she has this disease and we like it that way! She ended up taking 3rd place overall in the female category and I'm still blown away at the blessing it is to have her be as healthy as she is that she can even do something like this! We are soooo grateful!
Kendell's little brother did the triathlon also, so he ended up in all the pictures. I have none of her by herself.
We are so proud of her and the fact that she doesn't let this disease get her down. Nobody there watching (with the exception of her family) knew she has this disease and we like it that way! She ended up taking 3rd place overall in the female category and I'm still blown away at the blessing it is to have her be as healthy as she is that she can even do something like this! We are soooo grateful!
Kendell's little brother did the triathlon also, so he ended up in all the pictures. I have none of her by herself.
Thursday, June 13, 2013
Test Results
Got a call from the nurse today about Kendell's culture and chest x-ray.
Each time we go they culture her sputum, (basically like a strep test swab) to see if she's growing any bacteria. Well, all of us are always growing some kind of bacteria, so I guess I mean dangerous ones. Some of the bacteria out there can be harmful for a person with CF, but wouldn't even cause symptoms in a healthy person. Also, a little know fact: kids with CF can pass certain bacteria between the two of them which is very hard (not to mention, very expensive) to kill.
Anyway, her culture came back normal, Growing lots of things, but nothing dangerous.
Good news
Kendell also had a chest x-ray, which came back with minor changes in her right lower lobe. They didn't go into much detail, because they weren't extremely concerned at this point but I'm guessing the x-ray was cloudy which means there is most likely some damage being caused by that darn thick sticky mucus. This is nothing new and nothing we are extremely surprised about, but the fact that is shows minor changes from last year is not the best news to me. I don't like the fact that even though it's slow progressing, it IS progressing. Her PFT's (pulmonary/lung function and capacity test) is still really high, so it doesn't seem to be causing any issues as of yet and we will continue to pray that is doesn't. Her PFT's have always been extremely high for someone with CF, probably even higher than a lot of healthy individuals. We consider that a huge blessing and hope they continue to stay high since that means the lungs are working properly and adequately. Basically we value every breath she can take on her own. A breath without struggle, without the use of oxygen and with lungs of her own that for now are healthy all things considered.
Each time we go they culture her sputum, (basically like a strep test swab) to see if she's growing any bacteria. Well, all of us are always growing some kind of bacteria, so I guess I mean dangerous ones. Some of the bacteria out there can be harmful for a person with CF, but wouldn't even cause symptoms in a healthy person. Also, a little know fact: kids with CF can pass certain bacteria between the two of them which is very hard (not to mention, very expensive) to kill.
Anyway, her culture came back normal, Growing lots of things, but nothing dangerous.
Good news
Kendell also had a chest x-ray, which came back with minor changes in her right lower lobe. They didn't go into much detail, because they weren't extremely concerned at this point but I'm guessing the x-ray was cloudy which means there is most likely some damage being caused by that darn thick sticky mucus. This is nothing new and nothing we are extremely surprised about, but the fact that is shows minor changes from last year is not the best news to me. I don't like the fact that even though it's slow progressing, it IS progressing. Her PFT's (pulmonary/lung function and capacity test) is still really high, so it doesn't seem to be causing any issues as of yet and we will continue to pray that is doesn't. Her PFT's have always been extremely high for someone with CF, probably even higher than a lot of healthy individuals. We consider that a huge blessing and hope they continue to stay high since that means the lungs are working properly and adequately. Basically we value every breath she can take on her own. A breath without struggle, without the use of oxygen and with lungs of her own that for now are healthy all things considered.
Tuesday, June 4, 2013
Checkup and Chad Lewis
Monday was quite an eventful day for us. We had one of Kendell's routine checkups at Primary Children's then we were able to go sit at a hole at the Chad Lewis Golf Classic (which benefits CF) as an ambassador to raise awareness. We missed some of the golfers because of the appointment, but we were able to talk with and see a lot of them.
Kendell's appointment went pretty good. The only concern was her weight. She had pretty much gained nothing from her last appointment 3 months ago. They really monitor these kids' weight and height because studies have shown their lung function is better when their BMI is higher on the charts rather than low where Kendell is and always has been. This is something that Kendell has battled with her whole life. We've been threatened over and over that they'll put a feeding tube in if she doesn't gain weight. (maybe threatened isn't the right word, but sometimes that's what it feels like). Miraculously she'll always have a massive weight gain for the next appointment, then the pattern seems to repeat itself over and over each time we go. I'm not sure this battle will ever end for her. I could just let them put a feeding tube in, but at this point I feel like even though she's small, she's IS healthy. If she was sick all the time, lethargic, etc. I would most definitely consider it, but that's not the case with her. The doctors know that also, so that's why it's never gone further than just "threats." She also had to get her yearly chest x-ray, so hopefully the results of that will be good.
Back to the golf tournament. I've been really proud of Kendell's willingness to help raise awareness at these fundraising events each time she's been asked. She has really impressed me. She is knowledgeable and does a great job talking to people and even a few times to the camera. I'm sure proud of her! Chad Lewis has sponsored this golf tournament for years, and sometimes there are some local celebs that come golf in it. We didn't see too many this year, (or at least any that I recognized) but did see Kyle Whittingham, Reno Mahe and heard Lavell Edwards was there but didn't see him. Kendell was interviewed by Rockwell watches while we were there (they are a big sponsor), so that was kind of neat. Best part of the day was that we got to have one of the legendary J-Dawgs!
Kendell and Chad Lewis (this is a picture of a picture, so not the best quality)
Kendell's appointment went pretty good. The only concern was her weight. She had pretty much gained nothing from her last appointment 3 months ago. They really monitor these kids' weight and height because studies have shown their lung function is better when their BMI is higher on the charts rather than low where Kendell is and always has been. This is something that Kendell has battled with her whole life. We've been threatened over and over that they'll put a feeding tube in if she doesn't gain weight. (maybe threatened isn't the right word, but sometimes that's what it feels like). Miraculously she'll always have a massive weight gain for the next appointment, then the pattern seems to repeat itself over and over each time we go. I'm not sure this battle will ever end for her. I could just let them put a feeding tube in, but at this point I feel like even though she's small, she's IS healthy. If she was sick all the time, lethargic, etc. I would most definitely consider it, but that's not the case with her. The doctors know that also, so that's why it's never gone further than just "threats." She also had to get her yearly chest x-ray, so hopefully the results of that will be good.
Back to the golf tournament. I've been really proud of Kendell's willingness to help raise awareness at these fundraising events each time she's been asked. She has really impressed me. She is knowledgeable and does a great job talking to people and even a few times to the camera. I'm sure proud of her! Chad Lewis has sponsored this golf tournament for years, and sometimes there are some local celebs that come golf in it. We didn't see too many this year, (or at least any that I recognized) but did see Kyle Whittingham, Reno Mahe and heard Lavell Edwards was there but didn't see him. Kendell was interviewed by Rockwell watches while we were there (they are a big sponsor), so that was kind of neat. Best part of the day was that we got to have one of the legendary J-Dawgs!
Kendell and Chad Lewis (this is a picture of a picture, so not the best quality)
Wednesday, May 29, 2013
Here we go....
It seems like almost weekly I see a story on the news, an article in a magazine or a Facebook post about Cystic Fibrosis. It is slowly and surely (and sadly) becoming a disease that is well known. It doesn't affect a large number of people, so it's no wonder people aren't sure what the disease is. I sure didn't before Kendell was diagnosed, but boy do we know all about it now! I blog Kendell's appointment updates, fundraising efforts and any events we attend on my personal blog, but I decided it was time to do more, raise even more awareness and keep family and friends posted and informed on what Cystic Fibrosis is (CF for short) and what it's like to have it. Not sure why it's taken me 11 years to do this? But they're so close to finding a cure and I want to be more involved than ever in helping that happen!
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