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.....

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:)

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!