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!
Wednesday, March 10, 2010
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:)
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