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!

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....

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:)

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.

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:)

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...

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.....