Wednesday, April 1, 2026
Tuesday, November 5, 2013
Same Song Second Verse
Almost 5 years ago, before I was even on Facebook, I started this blog at the request of some members of a former Church we attended. We have been members of many Church families due to moving, and they had heard our precious new daughter was diagnosed with CF and wanted a way to keep up with her. I posted for awhile and then, thankfully, there stopped being "news" to post. She is beautiful and healthy. We do have to do new treatments and antibiotics occasionally, but she has a very mild form of CF and we are very, very blessed.
I am updating today with a post very similar to the first ever written. Ashton has a new baby sister, Ainsley, and she is following in her sister's footsteps. She is beautiful, healthy, and she has CF. To say this is unexpected in an understatement. Of course we knew it was a possibility, but we so hoped it wouldn't be the case.
There really isn't much to say. She is healthy. We know how to treat it. We have been down this road before, and we will continue to use all of this and all other circumstances to bring glory to God. We give Him all the glory for great things He has done. He formed ALL of our children in the secret place... He knew their names on the cross and He knows every hair on their heads and every. single. strand. of DNA is EXACTLY as He intends it to be.
I just figured the same family and friends that were concerned about Ashton would want to know this. Love you all and hopefully there will be little or no news to share he in the coming weeks and years other than all is well!
I am updating today with a post very similar to the first ever written. Ashton has a new baby sister, Ainsley, and she is following in her sister's footsteps. She is beautiful, healthy, and she has CF. To say this is unexpected in an understatement. Of course we knew it was a possibility, but we so hoped it wouldn't be the case.
There really isn't much to say. She is healthy. We know how to treat it. We have been down this road before, and we will continue to use all of this and all other circumstances to bring glory to God. We give Him all the glory for great things He has done. He formed ALL of our children in the secret place... He knew their names on the cross and He knows every hair on their heads and every. single. strand. of DNA is EXACTLY as He intends it to be.
I just figured the same family and friends that were concerned about Ashton would want to know this. Love you all and hopefully there will be little or no news to share he in the coming weeks and years other than all is well!
Saturday, January 14, 2012
December ETCH Appt
I love that I almost NEVER have anything to write about these appointments. However, this time there sort of is something to write... but I KNOW it is not an issue. The thing is, the doctors like to see kids with Cystic Fibrosis in the 50th percentile or above for BMI. Ashton has never been lower than 49th, and has almost always been around 51st or so. I my opinion, the 50th percentile rule should NOT apply to her because she is pancreatic sufficient, but they always check it anyway.
At her December appointment, just after Christmas, the nurse practioner that we saw stated that her BMI had consistently dropped over the last couple of appointments, it is not in the 40th percentile, and because of this we have to come back once a month to keep an eye on it until it stops dropping. Now this turned on my argumenative "do you even read her chart" radar as I stated that there was no concern becasue she is pancreatic sufficient. I told her that we were told in the beginning that either you are or you are not, and it does not change. She let me know quickly that is no longer believed to be the case. So my next comment was that we should just automatically test annually so that we know what we are dealing with, and she agreed, but did not schedule a test. I really wished I was with a doctor.
Anyway, the deal is they are having me feed her a CF diet, which is a CRAZY amount of calories and VERY unhealthy for someone who is not pancreatic insufficient. Ashton LOVES fruit and vegetables. She is a dream eater and I do not want to jeapordize that for no reason. We go back on the 25th of January. We'll see what happens. The nurse acknowledged that this is the age where kids hit growth spurts (remember she grew 2 1/2 inches in 3 months) and need fewer calories.
She shows NO OTHER symptoms of insufficiency, but then I have to remind myself she shows no CF symptoms at all. We will see, and keep praying, and continue to be eternally thankful for our God's mercy and grace. I'll update after the 25th....
At her December appointment, just after Christmas, the nurse practioner that we saw stated that her BMI had consistently dropped over the last couple of appointments, it is not in the 40th percentile, and because of this we have to come back once a month to keep an eye on it until it stops dropping. Now this turned on my argumenative "do you even read her chart" radar as I stated that there was no concern becasue she is pancreatic sufficient. I told her that we were told in the beginning that either you are or you are not, and it does not change. She let me know quickly that is no longer believed to be the case. So my next comment was that we should just automatically test annually so that we know what we are dealing with, and she agreed, but did not schedule a test. I really wished I was with a doctor.
Anyway, the deal is they are having me feed her a CF diet, which is a CRAZY amount of calories and VERY unhealthy for someone who is not pancreatic insufficient. Ashton LOVES fruit and vegetables. She is a dream eater and I do not want to jeapordize that for no reason. We go back on the 25th of January. We'll see what happens. The nurse acknowledged that this is the age where kids hit growth spurts (remember she grew 2 1/2 inches in 3 months) and need fewer calories.
She shows NO OTHER symptoms of insufficiency, but then I have to remind myself she shows no CF symptoms at all. We will see, and keep praying, and continue to be eternally thankful for our God's mercy and grace. I'll update after the 25th....
Friday, September 30, 2011
September Quarterly Appointment Update on Ashton and Family Update
I so rarely update the family blog, I think because I started it for updates on Ashton and almost all of her appointments or blessedly uneventful! Still, we had an appointment this week, and though it was not necessarily eventful, there are updates. First and foremost she is an extremely healthy little girl!
When we got there and got in a room and they came and got her to measure her again because they said their equipment must have malfunctioned. I assumed it was saying she was smaller than she should be. Come to find out, after measuring four times on at least 2 different machines, she grew 2 and 1/2 inches in 3 months! Wow! I thought those pjs I bought at the beginning of the summer shrunk, lol!
She gained the weight she should have also, but because her height is now above average and her weight is average, her BMI has dropped to the 45th percentile. Even though she is pancreatic sufficient, they still like to see her at or above the 50th percentile. Right now it is the lowest it has ever been. They are not worried because the main factor is the huge growth spurt and she is not showing signs of insufficiency, but they did say not worry about restricting calories or fat, and to even add them liberally! They sugested all the things that are suggested to kids that are pancreatic insufficient, including full fat butter and sour cream in mashed potatoes, extra cheese and powedered milk added to whatever I can add it to, and anything else I can come up with to add fat and calories. They suggested 2,000 calories a day, which is the norm for adults!
I had also been reading about CF kids needing more salt in their diet because they lose more when they sweat. No one ever said anything about this to us, so I brought it up to the nutritionist. She said yes, to give plenty of salty snacks, use the salt shaker liberally, and even to add salt to pretzels, crackers, and popcorn! Poor Jackson is going to feel so mistreated.
We had the vitamin discussion again as well. I have not been able to get her to take the CF vitamin in liquid form since she was very, very young, so the consensus has been to have her take a whole chewable off the shelf like a Flintstone (the recommended dose for her age is a half.) Well, the only issue on the results of her annual blood work, which they drew blood for in June, was that her vitamin D was a little low. They like it to be 30 and it was 29. Soooo, they tell me they have a chewable CF vitamin! Why did someone not tell me that when we began trying to figure out what to do a year ago! She could chew! Anyway, she is taking it now and all seems good.
She also had a chest x-ray this time and though we do not have the result, she did a great job. She sat right where she was supposed to and said CHEESE! LOL! She also sat and opened her mouth for her cough culture and they said even the big kids fight them on that. The only other change is the addition of a cough regime to her vest treatment just to move any mucus that may be loosened during the treatment.
As a reward for how great she did she got her ears pierced. I think that was the most traumatic part of the whole day, but she wanted it even after she knew it was gonna hurt. She cried, but I think it was more traumatic for me!
In other news, Jackson is doing Cub Scouts and Flag Football. Flag football will be over in a few weeks and he wants to do pads next year. Apparently he can and his daddy said okay....I think I will need a prescription. He LOVES Cub Scouts and the whole family went on his first Cub Scout family campout. It was fun, and I hope he continues to enjoy scouting. It is a great program. First grade is going well, though he nor I enjoy the homework he has each night. We have had a lot of lessons on having to do things you do not want to do sometimes.
I hope all is well with your families. Until next time:)
When we got there and got in a room and they came and got her to measure her again because they said their equipment must have malfunctioned. I assumed it was saying she was smaller than she should be. Come to find out, after measuring four times on at least 2 different machines, she grew 2 and 1/2 inches in 3 months! Wow! I thought those pjs I bought at the beginning of the summer shrunk, lol!
She gained the weight she should have also, but because her height is now above average and her weight is average, her BMI has dropped to the 45th percentile. Even though she is pancreatic sufficient, they still like to see her at or above the 50th percentile. Right now it is the lowest it has ever been. They are not worried because the main factor is the huge growth spurt and she is not showing signs of insufficiency, but they did say not worry about restricting calories or fat, and to even add them liberally! They sugested all the things that are suggested to kids that are pancreatic insufficient, including full fat butter and sour cream in mashed potatoes, extra cheese and powedered milk added to whatever I can add it to, and anything else I can come up with to add fat and calories. They suggested 2,000 calories a day, which is the norm for adults!
I had also been reading about CF kids needing more salt in their diet because they lose more when they sweat. No one ever said anything about this to us, so I brought it up to the nutritionist. She said yes, to give plenty of salty snacks, use the salt shaker liberally, and even to add salt to pretzels, crackers, and popcorn! Poor Jackson is going to feel so mistreated.
We had the vitamin discussion again as well. I have not been able to get her to take the CF vitamin in liquid form since she was very, very young, so the consensus has been to have her take a whole chewable off the shelf like a Flintstone (the recommended dose for her age is a half.) Well, the only issue on the results of her annual blood work, which they drew blood for in June, was that her vitamin D was a little low. They like it to be 30 and it was 29. Soooo, they tell me they have a chewable CF vitamin! Why did someone not tell me that when we began trying to figure out what to do a year ago! She could chew! Anyway, she is taking it now and all seems good.
She also had a chest x-ray this time and though we do not have the result, she did a great job. She sat right where she was supposed to and said CHEESE! LOL! She also sat and opened her mouth for her cough culture and they said even the big kids fight them on that. The only other change is the addition of a cough regime to her vest treatment just to move any mucus that may be loosened during the treatment.
As a reward for how great she did she got her ears pierced. I think that was the most traumatic part of the whole day, but she wanted it even after she knew it was gonna hurt. She cried, but I think it was more traumatic for me!
In other news, Jackson is doing Cub Scouts and Flag Football. Flag football will be over in a few weeks and he wants to do pads next year. Apparently he can and his daddy said okay....I think I will need a prescription. He LOVES Cub Scouts and the whole family went on his first Cub Scout family campout. It was fun, and I hope he continues to enjoy scouting. It is a great program. First grade is going well, though he nor I enjoy the homework he has each night. We have had a lot of lessons on having to do things you do not want to do sometimes.
I hope all is well with your families. Until next time:)
Sunday, March 20, 2011
Updates and Strange Reminders
I haven't blogged here in a long time, but this is where I blog about family and Ashton's journey with CF. I thought some of you might be interested in the new doctors and how things are since we moved to Knoxville. Ashton's health continues to be outstanding, amazing even. There are reminders, however, that everything is not exactly right. These are things that would not necessarily lead us to believe she had CF if we did not know, but since we do know, we are able to recognize them for what they are. Her morning cough is probably not just allergies or sinus drainage. Her boughts with mild constipation and occassional vomiting are probably very, very mild CF related symptoms. We know we are so, so blessed that she is such a healthy little girl.
This weekend our family went to the American Museum of Science and Energy in Oak Ridge. It was free admission days so we took advantage. There was an exhibit where you placed one hand on an aluminum plate and one hand on a copper plate and the electricity from your body made a needle move. Then you were supposed to breath on your hands to make them sweat, and the salt on your skin would make more electrcity go through and the needle would move more. Neat little gadget, and Aaron and I both did it with the needle moving as it should. Aaron put Ashton's little hands up there and the needle went off the chart. If you'll remember from what I wrote at the beginning, one of the ways they diagnose CF is by the increased salt content in the sweat. A strange reminder that things are not exactly normal.
As far as East Tennessee Children's hospital... AWESOME. The doctors are much more aggressive. This could prove to be not so great, but for now, we are happy. They told us that kids as healthy as Ashton worry them because they can slip through the cracks until they are really sick. They do not plan to let that happen. So far they have only added a nebulizer treatment to her normal treatment regime. It is a hypertonic saline solution (yes, that is salt water) that she inhales as a mist twice per day with her regular inhaler and vest treatment. She hates it, but they say they have seen kids go from completely junky lungs to completely clear after six months of this, so they put everyone on it. I'm game. They also do a bronch once a year where they take a sample from her lungs to make sure they catch anything that could be growing ASAP.
A nice side treat is that they have a closet full of toys in the waiting room and one lady is in charge of them. She hands toys out and keep them clean and that way everyone can play and no one catches germs from the toys. She also sets up the exam room with toys, colors, stickers, etc. Last time Jackson went and they made sure he had plenty to keep him occupied as well. It made clinic day so much easier.
Jackson is doing GREAT in school here and is all about science lately. We are trying to nurture that. We love Knoxville, but we are so thankful for technology that keeps us connected to each of you...we love all of you. Hopefully it will not be so long until next time.
This weekend our family went to the American Museum of Science and Energy in Oak Ridge. It was free admission days so we took advantage. There was an exhibit where you placed one hand on an aluminum plate and one hand on a copper plate and the electricity from your body made a needle move. Then you were supposed to breath on your hands to make them sweat, and the salt on your skin would make more electrcity go through and the needle would move more. Neat little gadget, and Aaron and I both did it with the needle moving as it should. Aaron put Ashton's little hands up there and the needle went off the chart. If you'll remember from what I wrote at the beginning, one of the ways they diagnose CF is by the increased salt content in the sweat. A strange reminder that things are not exactly normal.
As far as East Tennessee Children's hospital... AWESOME. The doctors are much more aggressive. This could prove to be not so great, but for now, we are happy. They told us that kids as healthy as Ashton worry them because they can slip through the cracks until they are really sick. They do not plan to let that happen. So far they have only added a nebulizer treatment to her normal treatment regime. It is a hypertonic saline solution (yes, that is salt water) that she inhales as a mist twice per day with her regular inhaler and vest treatment. She hates it, but they say they have seen kids go from completely junky lungs to completely clear after six months of this, so they put everyone on it. I'm game. They also do a bronch once a year where they take a sample from her lungs to make sure they catch anything that could be growing ASAP.
A nice side treat is that they have a closet full of toys in the waiting room and one lady is in charge of them. She hands toys out and keep them clean and that way everyone can play and no one catches germs from the toys. She also sets up the exam room with toys, colors, stickers, etc. Last time Jackson went and they made sure he had plenty to keep him occupied as well. It made clinic day so much easier.
Jackson is doing GREAT in school here and is all about science lately. We are trying to nurture that. We love Knoxville, but we are so thankful for technology that keeps us connected to each of you...we love all of you. Hopefully it will not be so long until next time.
Monday, December 6, 2010
2 Years and Still Sympton Free!
I cannot believe it has been two years since our journey with CF began. We had no clue what we were facing, and still don't. But, Ashton had her quaterly check up just a couple of weeks before her birthday, and she is as perfectly ok now as she has always been. The doctors continue to be amazed! The one thing that has changed in my eyes is my thought that if they had not tested her at birth we still would not know. I cannot honestly say that I think that she would still not have any symptoms if we were not treating her. The reason is, I do notice an increased cough when she misses a vest treatment for whatever reason. This happens very, very rarely, but unfortunatley, it does happen. It could be something that would happen reguardless, we all cough, right? But it does seem to increase if there is a missed treatment. All of that to say, PRAISE GOD that they caught it at birth, and we have been treating from almost day one (since she was 5 weeks old!). Our God is a awesome God, truly! Thank you all for your love, support, and prayers for the first two years of this journey, and we beg that you continue it with us:)
Thursday, August 12, 2010
August Quarterly Appointment
We had our 3rd quarterly appointment for the year last week. One week ago today actually. There is actually stuff to report this time:) Usually this is not good, but today it is! Ashton measured large enough around her chest to get a vest! Yaaay! We received it yesterday and she used it last night and this morning. She is such a little champ. It CAN'T be fun, but she did it anyway. We are supposed to ease her up to 30 minutes, 10 minutes each at 3 progressively faster speeds. She did 25 minutes last night and 23 this morning! We only stopped this morning because she needed to use the bathroom... even though I took her right before we started. Hey, she's little, and if you could see how this thing shakes you, you would understand, ha:)
The vest is what we do in place of the "bop, bop", or Chest Physical Therapy. It basically blows up around her chest like a blood pressure cuff and shakes the mess out of her. The problem we have now is that she is supposed to take two puffs on her inhaler prior to the vest session, just like she did prior to her bop, bop. Well, we have been doing the inhaler (with a mask) and her bop, bop while she is asleep. Somehow I have to figure out how to get her to do her puffs now. I am sure we will figure it out....
Here is the other news. This news is neither good or bad...yet. I called today to check on her cough culture results because they had not called us as they usually do. I figured it was becasue we have a new doctor, due to the fact that our old doctor was a fellow, and she graduated after our last appointment in May. Well, that was not the case. I did speak with a new nurse, and she indicated that it was because there was a "bug" growing that was growing very slowly and they could not yet tell what it was. She said they may have to send it off to another lab. She also said that although it was a "gamma negative, rod," (this refers to the shape and other characteristics of the bacteria) which is characteristic of pseudemonas, the lab tech indicated that it does not look like pseudemonas. This is one of the two big bad bugs that we DO NOT want! So, I have to admit, that was a little concerning. However, we of course know that our God is an awesome God and He reigns, however it turns out. She has a little bit of a runny nose and an occassional cough, but nothing major right now.
Hopefully I'll be able to post some pictures or maybe even a video of "vest" time soon. This is a whole new era for the Stewart Family... no bop, bop! Wow...
The vest is what we do in place of the "bop, bop", or Chest Physical Therapy. It basically blows up around her chest like a blood pressure cuff and shakes the mess out of her. The problem we have now is that she is supposed to take two puffs on her inhaler prior to the vest session, just like she did prior to her bop, bop. Well, we have been doing the inhaler (with a mask) and her bop, bop while she is asleep. Somehow I have to figure out how to get her to do her puffs now. I am sure we will figure it out....
Here is the other news. This news is neither good or bad...yet. I called today to check on her cough culture results because they had not called us as they usually do. I figured it was becasue we have a new doctor, due to the fact that our old doctor was a fellow, and she graduated after our last appointment in May. Well, that was not the case. I did speak with a new nurse, and she indicated that it was because there was a "bug" growing that was growing very slowly and they could not yet tell what it was. She said they may have to send it off to another lab. She also said that although it was a "gamma negative, rod," (this refers to the shape and other characteristics of the bacteria) which is characteristic of pseudemonas, the lab tech indicated that it does not look like pseudemonas. This is one of the two big bad bugs that we DO NOT want! So, I have to admit, that was a little concerning. However, we of course know that our God is an awesome God and He reigns, however it turns out. She has a little bit of a runny nose and an occassional cough, but nothing major right now.
Hopefully I'll be able to post some pictures or maybe even a video of "vest" time soon. This is a whole new era for the Stewart Family... no bop, bop! Wow...
Monday, June 21, 2010
Sometimes you forget
I have spent the last several minutes scrolling through some of the CF blogs out there. Most are parents that have children with CF, but a few are spouses of people with CF, or were spouses of people with CF. In spite of daily treatments, and due Ashton's AMAZING health, I very often and all to easily forget that we even have a baby with Cystic Fibrosis. It is STILL hard for me to write that. Oddly, saying it is easier, it is like I can kind of blow it off... and words float away. Something written stays put, right where it is. I forget, and then I hear a cough, or, like recently, she has a cough that just won't let go. With Jackson, I didn't worry, kids get colds, right? I no longer REALLY have that luxury, although it is unbelievable to me how often I tend to forget that too. People who are around me would probably find it laughable to hear me say that I forget, as they probably think it is all I talk about. Still, in the quiet, the in "circus" as my husband calls the little world my brain functions in, it is often forgotten. I do not want to dwell on it. I am THANKFUL that Ashton is SO HEALTHY that is is possible to forget. Yet still, in some ways, it is almost harder because when you remember it is all very, very fresh, and this happens several times a week, sometimes a day. Then there are those well meaning souls that won't let you blow it off. It gets mentioned, brought up, one way or the other, and someone makes a statement like this, "I knew so and so and they had a daughter that had CF that lived into her teen years." That DOES NOT HELP! Granted, those people have NO CLUE that the average age is now 37 years and that Ashton is not expected to have her life shortened AT ALL by this disease, and I know all of that, but still....
This is no pity party. I honestly just find it amazing and unbelievable that it is so easy to forget... and so painful when you remember. The MAIN thing is, however, that I praise HIM that, like I said, we are able to forget. She really is SO healthy. Thanks you Jesus. When I read the other blogs, I see where we could be, and I am so humbled.....
This is no pity party. I honestly just find it amazing and unbelievable that it is so easy to forget... and so painful when you remember. The MAIN thing is, however, that I praise HIM that, like I said, we are able to forget. She really is SO healthy. Thanks you Jesus. When I read the other blogs, I see where we could be, and I am so humbled.....
Sunday, May 30, 2010
May Quarterly Appointment and other Stewart new
We had Ashton's quarterly appointment this week, and it was fairly uneventful, which is GREAT! She is 23 lbs and 31 inches, and they are continually amazed at how well she is doing. They did measure her for a vest that will take the place of manual "bopping" for her treatments. She has to be 18 months old (she will be Wed.) and 19 inches around her chest to be able to wear it. She is 18 inches, so we still need another inch. I am VERY MUCH looking forward to this vest, as it is getting increasingly difficult to do the manual chest physical therapy. I cannot do it unless she is asleep, which is not a big deal at night, I just put her to sleep first. However, getting her up in the morning to do it and keeping her asleep is a whole other story.
The one kink to the vest is that we found out it is quite pricey. Of course, any medical equipment is, however, we also found out that neither of our insurance policies cover it. Needless to say prayers in that department would be very much appreciated. When the time comes, we can appeal the insurance company, and we will... it will just take some time.
We also discussed vitamins. The CF vitamin they prescribed for her is nasty and frankly she stopped taking it at around the time she stopped eating baby cereal (around 11 months or so?) She would only take it mixed in that, and she just decided no more. If you give it to her straight she throws it up. I discussed this issue with her drs and they said we would discuss more after we got her vitamin levels back in Feb. At that point she had been without it for several months and everything looked great! They never said anything about it, so I just started giving her a quarter of a Flintstones vitamin. Now, this might sound negligent to some of you who are familiar with CF. But let me remind you that the difference in the vitamin for CF is that the A,D,E, &K fat soluble vitamins are in water soluble form, due to the fact that people with CF that are not pancreatic sufficient cannot digest their fats very well. However, Ashton is very blessed to have NO PROBLEM with that. So I NEVER understood why she was on this vitamin, and they could never tell me. When they acted all concerned about her not taking this vitamin any more, I questioned them on what the problem was since her panels were fine with NOTHING, I was giving her SOMETHING now, and there was no need for her to have a CF specific vitamin. The answer I got was "Well, now you're getting into a gray area." and "Better safe than sorry."
Needless to say I felt about two inches tall and I have NO CLUE how I am going to get her to take this. It is frustrating, to say the least, just because EVERYTHING thing we do for Ashton, the appointments, the treatments, the vitamin, everything is on the "better safe that sorry" mindset. I do agree with this, don't get me wrong. I pray that everything we do can keep her symptom free. That is the goal and the purpose for it all, and I know, as I have said MANY times before, how blessed we are... but that doesn't keep it from being slightly irritating when you have been there for 4 hours and you are told your child has to take this nasty medicine "just in case" even though her specific illness doesn't require it, and they offer NO solution as to just how to get a one year old to swallow it and KEEP IT DOWN!
Okay, enough of that. It truly was a great appointment, and I will update when we get the standard cough culture back. Of course we are praying she doesn't grow any bad buggies!
In other news, Jackson Graduated from WEE School this month. It was a wonderful program and of course I bawled. I bawled because he is growing so fast, I bawled because he wasn't with the same group of friends he started with in Wynne (and neither were we), and I bawled because they played a sad song, lol:)
He also started playing T-ball, and the only part he likes is batting (I think) and the icee he gets at the end of each game!
We have a busy summer coming up with VBS, swimming lessons, vacation, and Aaron is going to be gone A LOT... that part is not so fun.
Oh, one last thing. They really didn't discuss the meds in the pipeline that were mentioned in my last post. I suppose because they are not really available yet... but we are STILL excited about that one.
Okay, another thing! Ashton's Army raised over $2,000 for Cystic Fibrosis research. I want to thank the entire team and everyone who donated. We love you, and get ready for next year! I'll post the final amount as soon as I have it! If you are waiting on your t-shirt please don't give up, I'm working on getting it to you:)
The one kink to the vest is that we found out it is quite pricey. Of course, any medical equipment is, however, we also found out that neither of our insurance policies cover it. Needless to say prayers in that department would be very much appreciated. When the time comes, we can appeal the insurance company, and we will... it will just take some time.
We also discussed vitamins. The CF vitamin they prescribed for her is nasty and frankly she stopped taking it at around the time she stopped eating baby cereal (around 11 months or so?) She would only take it mixed in that, and she just decided no more. If you give it to her straight she throws it up. I discussed this issue with her drs and they said we would discuss more after we got her vitamin levels back in Feb. At that point she had been without it for several months and everything looked great! They never said anything about it, so I just started giving her a quarter of a Flintstones vitamin. Now, this might sound negligent to some of you who are familiar with CF. But let me remind you that the difference in the vitamin for CF is that the A,D,E, &K fat soluble vitamins are in water soluble form, due to the fact that people with CF that are not pancreatic sufficient cannot digest their fats very well. However, Ashton is very blessed to have NO PROBLEM with that. So I NEVER understood why she was on this vitamin, and they could never tell me. When they acted all concerned about her not taking this vitamin any more, I questioned them on what the problem was since her panels were fine with NOTHING, I was giving her SOMETHING now, and there was no need for her to have a CF specific vitamin. The answer I got was "Well, now you're getting into a gray area." and "Better safe than sorry."
Needless to say I felt about two inches tall and I have NO CLUE how I am going to get her to take this. It is frustrating, to say the least, just because EVERYTHING thing we do for Ashton, the appointments, the treatments, the vitamin, everything is on the "better safe that sorry" mindset. I do agree with this, don't get me wrong. I pray that everything we do can keep her symptom free. That is the goal and the purpose for it all, and I know, as I have said MANY times before, how blessed we are... but that doesn't keep it from being slightly irritating when you have been there for 4 hours and you are told your child has to take this nasty medicine "just in case" even though her specific illness doesn't require it, and they offer NO solution as to just how to get a one year old to swallow it and KEEP IT DOWN!
Okay, enough of that. It truly was a great appointment, and I will update when we get the standard cough culture back. Of course we are praying she doesn't grow any bad buggies!
In other news, Jackson Graduated from WEE School this month. It was a wonderful program and of course I bawled. I bawled because he is growing so fast, I bawled because he wasn't with the same group of friends he started with in Wynne (and neither were we), and I bawled because they played a sad song, lol:)
He also started playing T-ball, and the only part he likes is batting (I think) and the icee he gets at the end of each game!
We have a busy summer coming up with VBS, swimming lessons, vacation, and Aaron is going to be gone A LOT... that part is not so fun.
Oh, one last thing. They really didn't discuss the meds in the pipeline that were mentioned in my last post. I suppose because they are not really available yet... but we are STILL excited about that one.
Okay, another thing! Ashton's Army raised over $2,000 for Cystic Fibrosis research. I want to thank the entire team and everyone who donated. We love you, and get ready for next year! I'll post the final amount as soon as I have it! If you are waiting on your t-shirt please don't give up, I'm working on getting it to you:)
Wednesday, March 10, 2010
Exciting news all around
Wow! It has been a LONG time since I blogged. Since this started as a blog about Ashton and our family's journey dealing with Cystic Fibrosis, I tend to wait until I have something to report. Typically, nothing exciting is GOOD. Today we have exciting and good news though.
First, Ashton is doing GREAT! We have left monthly appointments behind and moved to quarterly appointments. This includes one "big" appointment per year in which we do all of the testing we did in the beginning, again. We did that on Feb 17th. We got xrays, stool elastase, cough culture (we do that one everytime) and blood work. The results were GREAT. They had NOTHING to report to us! One of the coolest parts is that even with not being able to get her to dring her nasty cf vitamin for several months, she showed NO vitamin deficiency. Bye bye nasty vitamin:)
When she is 18 months old, they will measure her for a vest, which will do the chest physical therapy for her, ie., NO MORE BOP BOP! Let me hear and AMEN! However, our next appt falls at 17 months, so we will have to wait until the next one, 20 months, to get measured. You also have to be 18 inches around the chest, which I am not sure she will be at that point.
If you haven't heard, we have a team walking in Ashton's honor at Great Strides, the Cystic Fibrosis Foundation's largest fundraiser. "Ashton's Army" has 12 team members and has already done a really good job of fundraising. I want to give a huge shout out to all the team members, I can't wait to see you guys on May 15th! (If you want to donate in Ashton's honor, go here http://www.cff.org/Great_Strides/FaithStewart and make a secure online donation in seconds.)
Now, the most exciting part EVER. For background on Ashton's specific mutations read previous posts if you haven't already. It might help you understand this one. Aaron and I both randomly search the internet for information on the very rare mutation that Ashton has. If you'll recall, at the time Ashton was diagnosed, she was only the second person in the WORLD documented to have this specific mutation. When they tested Aaron, the lab told us that he and Ashton were the only two people in their ENTIRE SYSTEM to have been found to have it. (Aaron is only a carrier, and the other person diagnosed was over seas, so wouldn't have used this lab.) Our searches never turned up much, just the same stuff we had already seen. The data bases still only reported the one case, Ashton had not hit their radar yet. No new info on prognosis, no extensive testing on this rare mutation, nothing. Until yesterday.
Yesterday I had an unexplainable urge to search again. Randomly? Maybe. Do I believe that? No. God speaks to me, I know that. I've shared some of it here. I will share more soon. So, I searched. Nothing new at first. I have the hits memorized. Then I saw a new article. I could only see the abstract, but it was enough. It was published around the time we left Wynne it looked like. It came from researchers in Memphis about a case at Lebohner where a baby had this same rare mutation. Some of you may not know, but this in only about 45 minutes from WYNNE! Anyway, I won't bore you will all of the details, but the situations are eerily similar, with a few notable differences. The coolest part is these doctors did IN DEPTH research of this rare mutation. The did research at the molecular level, discovered just how efficient (or ineffiecient) it is, and determined... are you ready for this? They determined there are drugs in the pipeline right now that can correct the inefficiencies in the specific mutation!!!!!! Remember, you only need one chromosome that works correctly for the gene to function correctly. This was INCREDIBLE news. We have been in contact with our dr at Children's, and with those involved in the research at Lebohnner. I will update as this story unfolds, but for now, say it with me, GOD IS GOOD!
First, Ashton is doing GREAT! We have left monthly appointments behind and moved to quarterly appointments. This includes one "big" appointment per year in which we do all of the testing we did in the beginning, again. We did that on Feb 17th. We got xrays, stool elastase, cough culture (we do that one everytime) and blood work. The results were GREAT. They had NOTHING to report to us! One of the coolest parts is that even with not being able to get her to dring her nasty cf vitamin for several months, she showed NO vitamin deficiency. Bye bye nasty vitamin:)
When she is 18 months old, they will measure her for a vest, which will do the chest physical therapy for her, ie., NO MORE BOP BOP! Let me hear and AMEN! However, our next appt falls at 17 months, so we will have to wait until the next one, 20 months, to get measured. You also have to be 18 inches around the chest, which I am not sure she will be at that point.
If you haven't heard, we have a team walking in Ashton's honor at Great Strides, the Cystic Fibrosis Foundation's largest fundraiser. "Ashton's Army" has 12 team members and has already done a really good job of fundraising. I want to give a huge shout out to all the team members, I can't wait to see you guys on May 15th! (If you want to donate in Ashton's honor, go here http://www.cff.org/Great_Strides/FaithStewart and make a secure online donation in seconds.)
Now, the most exciting part EVER. For background on Ashton's specific mutations read previous posts if you haven't already. It might help you understand this one. Aaron and I both randomly search the internet for information on the very rare mutation that Ashton has. If you'll recall, at the time Ashton was diagnosed, she was only the second person in the WORLD documented to have this specific mutation. When they tested Aaron, the lab told us that he and Ashton were the only two people in their ENTIRE SYSTEM to have been found to have it. (Aaron is only a carrier, and the other person diagnosed was over seas, so wouldn't have used this lab.) Our searches never turned up much, just the same stuff we had already seen. The data bases still only reported the one case, Ashton had not hit their radar yet. No new info on prognosis, no extensive testing on this rare mutation, nothing. Until yesterday.
Yesterday I had an unexplainable urge to search again. Randomly? Maybe. Do I believe that? No. God speaks to me, I know that. I've shared some of it here. I will share more soon. So, I searched. Nothing new at first. I have the hits memorized. Then I saw a new article. I could only see the abstract, but it was enough. It was published around the time we left Wynne it looked like. It came from researchers in Memphis about a case at Lebohner where a baby had this same rare mutation. Some of you may not know, but this in only about 45 minutes from WYNNE! Anyway, I won't bore you will all of the details, but the situations are eerily similar, with a few notable differences. The coolest part is these doctors did IN DEPTH research of this rare mutation. The did research at the molecular level, discovered just how efficient (or ineffiecient) it is, and determined... are you ready for this? They determined there are drugs in the pipeline right now that can correct the inefficiencies in the specific mutation!!!!!! Remember, you only need one chromosome that works correctly for the gene to function correctly. This was INCREDIBLE news. We have been in contact with our dr at Children's, and with those involved in the research at Lebohnner. I will update as this story unfolds, but for now, say it with me, GOD IS GOOD!
Thursday, October 22, 2009
Long time no blog...
Wow! So much to blog about since the last time I did this! First, we did not get to skip our October appt. It was an oversite. I got a phone call on a Friday that they needed us to come on Tues. So, we went. No problems, everything looked great, and she is up to the 56th percentile in her height to weight ratio. This is WELL ABOVE where they want her to be. We never heard from the cough culture and I keep forgetting to call. Must not be too bad... but I'll let everyone know when I know:)
In other news, as most of you know, the Stewart clan is moving yet again. This is number 10 in 10 years I think. Aaron has accepted a postition as the Executive Director of the Magnolia Economic Development Corporation (the C might stand for something else, Council, something, not sure really!) Anyway, he accepted the position on Sept 15th, and the movers came on October 5th. How's that for turnaround! They came on the 5th because that is the only time they could come. His first day on the job was the 19th, however, the house we want to rent in Magnolia is currently occupied until the house the current residents are building is complete... so we are living it up in Hampton at my parents house until we can move in. That is supposed to be next week. We are PRAYING! I love my parents, I am so grateful to them, and I know they are loving the time with the grandkids, both sets of grandparents are, but I am ready for my own house again:) LOL! I am sure they won't mind some peace and quiet either! We are just excited to see what the Lord has in store for us in Magnolia, Arkansas. We are excited to start visiting Churches, meeting friends, and bringing glory to His name in whatever way He has in store for us!
I have had two job interviews... waiting to hear back from one so we can make a decision if their is a decision to make. I will keep everyone updated.
Ashton's next appt is Nov 19th and we are really praying they have all the flu vaccines she needs then. They will vaccinate us too if they have the supplies, so that will be good:)
In other news, as most of you know, the Stewart clan is moving yet again. This is number 10 in 10 years I think. Aaron has accepted a postition as the Executive Director of the Magnolia Economic Development Corporation (the C might stand for something else, Council, something, not sure really!) Anyway, he accepted the position on Sept 15th, and the movers came on October 5th. How's that for turnaround! They came on the 5th because that is the only time they could come. His first day on the job was the 19th, however, the house we want to rent in Magnolia is currently occupied until the house the current residents are building is complete... so we are living it up in Hampton at my parents house until we can move in. That is supposed to be next week. We are PRAYING! I love my parents, I am so grateful to them, and I know they are loving the time with the grandkids, both sets of grandparents are, but I am ready for my own house again:) LOL! I am sure they won't mind some peace and quiet either! We are just excited to see what the Lord has in store for us in Magnolia, Arkansas. We are excited to start visiting Churches, meeting friends, and bringing glory to His name in whatever way He has in store for us!
I have had two job interviews... waiting to hear back from one so we can make a decision if their is a decision to make. I will keep everyone updated.
Ashton's next appt is Nov 19th and we are really praying they have all the flu vaccines she needs then. They will vaccinate us too if they have the supplies, so that will be good:)
Thursday, September 3, 2009
Sept appt
We had our Sept appt today. More of the same really... except that she has jumped from the 50th percentile on the growth chart to the 51st...she got a smiley face sticker for that! Also, there was the warning for the cold and flu season coming up. We were advised to not go to the mall or Walmart during "peak" hours and to not used the nursery at Church if we know there are sick kids in there or that there is something going around. They are of course pleased that she in no longer in child care for as long as that can last. So we may be hermits this winter! Still, they did not recomment the RSV vaccine for this season, which is good, and we will not go back until the first week of Nov. That is skipping another month! I'll report the cough culture results when we get them.
Ashton took three steps yesterday, on her 9 month birthday. I am currently having to remind myself to shut the bathroom doors to keep her away from the soap ( her new favorite snack) and the potty (she has deemed it her personal aquatic park). Jackson is as wild as ever, all little boy, with a mouth that rivals mine as a child, and that is bad. He love his sissy though, and is still loving his new school.
Ashton took three steps yesterday, on her 9 month birthday. I am currently having to remind myself to shut the bathroom doors to keep her away from the soap ( her new favorite snack) and the potty (she has deemed it her personal aquatic park). Jackson is as wild as ever, all little boy, with a mouth that rivals mine as a child, and that is bad. He love his sissy though, and is still loving his new school.
Tuesday, August 25, 2009
August appt and other happenings...
There was a surprise for the August appt... there wasn't one! I guess since we basically skipped July (didn't go until July 30th...) and our dr is out in August.. they just skipped! We go on Sept 3rd... another LOVELY 8:00 am appt. The ONLY good thing about that is that we get in and out faster, we did last time at least.
In other news, Jackson started WEE School at our Church last week and LOVES it! He is already learning more and it is only from 8-12 3 days a week, which is much less school that he is used to.
Ashton took a step, well, really it was more like a stomp, she moved one foot forward while standing on her own so I am putting it on record that her first step was at 8 months. I am sure she will wait until she is at least two to take another one since I have put that in writting! She has also given up on baby food almost all together. Some new foods that she has tried recently and really taken a liking too are real green beans, carrots, turkey sandwich with mustard, ramen noodles (I cannot eat these in front of her if I want her to eat something else), and cinammon toast crunch. She has pretty much decided it is only big girl food for her! She also broke another tooth through yesterday, top left...
Health wise, all is good. She is coughing a little more, but I am CONVINCED it is from extra saliva from teething... you can just about see it choking her... So, we are just doing our treatments and continuing to pray:)
In other news, Jackson started WEE School at our Church last week and LOVES it! He is already learning more and it is only from 8-12 3 days a week, which is much less school that he is used to.
Ashton took a step, well, really it was more like a stomp, she moved one foot forward while standing on her own so I am putting it on record that her first step was at 8 months. I am sure she will wait until she is at least two to take another one since I have put that in writting! She has also given up on baby food almost all together. Some new foods that she has tried recently and really taken a liking too are real green beans, carrots, turkey sandwich with mustard, ramen noodles (I cannot eat these in front of her if I want her to eat something else), and cinammon toast crunch. She has pretty much decided it is only big girl food for her! She also broke another tooth through yesterday, top left...
Health wise, all is good. She is coughing a little more, but I am CONVINCED it is from extra saliva from teething... you can just about see it choking her... So, we are just doing our treatments and continuing to pray:)
Sunday, August 9, 2009
She speaks!
So Ashton has now said 3 words! First was "Dada", which started out and still is sometimes "ada,", then was "Mama" (only once, never since!), and now, and the most frequent, "Bubba!" Jackson has been visiting the grandparents and we just got him back. She looked right at him and said "bubba" more than once in a several minute span...she was soooo happy to have him back, as were we:) He missed her too... he went straight for her when we picked him up. They definitely have a special bond and I pray that it grows as they grow older.
Some of you may have gotten an e-mail from Aaron in the form of a prayer request for a new CF drug. For those of you who didn't, here is your request. There is a drug that is in the works that will affect people with the DelF508 mutation, which is the mutation Ashton inherited from me. If approved, it will actually treat the actual defect in the gene, if I understand it right, not just the symptoms it causes... this drug has just moved to the next phase of testing! It is that much closer! Please pray for wisdom for the drs and scientists involved, as well as the safety and health of the patients particpating in the trials.
Some of you may have gotten an e-mail from Aaron in the form of a prayer request for a new CF drug. For those of you who didn't, here is your request. There is a drug that is in the works that will affect people with the DelF508 mutation, which is the mutation Ashton inherited from me. If approved, it will actually treat the actual defect in the gene, if I understand it right, not just the symptoms it causes... this drug has just moved to the next phase of testing! It is that much closer! Please pray for wisdom for the drs and scientists involved, as well as the safety and health of the patients particpating in the trials.
Thursday, August 6, 2009
Thursday, July 30, 2009
July appt and random pics
Ashton's July appt was uneventful, which is always good. They did say they would measure her for a vest at 18 months, and we will cross our fingers that she is big enough... since there wasn't much to report, I thought I would post some pics for you to enjoy. She has two new fave foods, pickles, and Nanny cookies. She devoured the Nanny cookie (aka tea cake) and sucked the pickle for like 10 minutes. She just grabbed it off a plate and went for it! The other two pics are just my babies showing out, Jackson is teaching her:)
Wednesday, July 1, 2009
update on vitamin levels
This will just be a short update. Nothing major, and really I just wanted to post;) They are probably going to reduce Ashton's vitamin dosage by half. I truly believe she should have always been on a regular vitamin like is recommended for all breastfeeding babies now rather than a CF vitamin. The difference is that the CF vitamin takes the fat soluble vitamins that people that have the digestive problems that come along with CF have trouble digesting, and make them water soluble. Since Ashton has no trouble digesting fats, I believe she should be on a regular vitamin. Don't get me wrong, as long as she is healthy, no big deal, but too much of a vitamin in your system can cause problems also. The nutritionist at Children's is great and has worked with us so much. As much as she could anyway. We haven't really needed the attention that most do, which we are extremely thankful for and Praise Him for! I don't think we are even going to see her anymore now unless we run into a weight or vitamin issue:) Anyway, yes, this is a random post, but I like to post every two or three days if possible...
Oh, and Jackson swears Ashton said "bubba" this morning! Also, it is becoming very obvious that Ashton's favorite place to play is "bubba's" room, and she LOVES purple hull peas:) (Talk about random!)
Oh, and Jackson swears Ashton said "bubba" this morning! Also, it is becoming very obvious that Ashton's favorite place to play is "bubba's" room, and she LOVES purple hull peas:) (Talk about random!)
Monday, June 29, 2009
June cough culture and vitamin levels
The June cough culture looked great! Apparently exactly the same as last time meaning she still grew the influenza from last time but that is apparently no big deal...and apparently there really was some kind of staph on the last one that is not there now. All of that to say this one is good:) Also if you'll remember, they drew blood to check vitamin levels...which were all normal except for one type of vitamin E that was elevated. I would think better high than low but I am waiting for a call back on that. In other news, for the first time since she was born Ashton had a cold that got better before she had to go into the hospital! Praise Him! Also, in the space of two weeks she has begun to crawl, pull up, and has cut two teeth! She is keeping us all on our toes:)
Wednesday, June 24, 2009
June ACH visit
We had our June check up last week. Ashton weights 16 lbs and 5 0z and was 26 inches long... they are always off from her pediatrician who said 27 inches the week before:) Anyway... 50th percentile which is still the green, or "no risk" area! Yay! We are still waiting on results from the cough culture and the vitamin levels. She has a little cold right now and actually started getting sick the day before this appt, so she was sick while she was there. They said she sounded clear in her lungs, so they just told us to to four treatments a day instead of two, which we knew. Let me tell you, though it is much easier now that I am not working, it is still a challenge to get in four of those treatments a day... Anyway, a great appointment overall and I'll update again when we have test results. Hope everyone is doing well:)
Steppin' Out on Faith...
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