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:)

She is taking baby steps unassisted, but she just took off with this on Labor Day. I thought at least the grandparents might enjoy:)

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.

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:)

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.

July Cough Culture

Just a short update... nothing abnormal on the July cough culture...yaay!

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:)

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!)

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:)

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...

Flip flops? Yes... for sale! Check them out, leave HONEST opinions.. and hopefully orders:) Tell family and friends...custom made to match any outfit

Vacation and other random pics

May cough culture results and family vacation

The results of the cough culture from May were good. She only grew one thing that wasn't normal, and it was a type of influenza... not a good thing of course, but not a major concern and they are not going to treat for it unless she starts showing symptoms, which... so far so good. In the meantime, we took a vacation to St. Louis! I will post pics and video as soon as we get them off Aaron's phone:) The battery died in the camera, and my phone took a swim in the toilet... so all the vacation stuff in on his phone. Jackson had a blast! We went to Meremac Caverns, we took a boat ride on the Meremac river... Jackson loved feeding the fish, the water was soooooo clear you could see them swim up to eat... and we went to the Arch, all the way to the top. However, when we asked Jackson what his favorite part was, he said "swimming with you mommy." The hotel pool was the first "real" pool he had ever been in and he LOVED it... he is definitely hooked. We could have not done anything but stay at the hotel and swim and he would have been happy. We stayed at the Mariott at Union Station ( LOVE priceline.come!) and it was great! We had everything we needed rigth there. We didn't even get to do everything we wanted to do, so I think we will definitely be going back... we did go see the Cards play too... but we made it through a 1/2 bag of popcorn, a hotdog dropped on the ground (Jackson dropped it, Aaron ate it!) and one inning before we finally gave in to the cries to go back.... maybe we'll try that again when the kiddos are a little older. Jackson has an ENT follow up this week and Ashton's next appointment is the 17th... so we'll see how that goes... we are praying for vitamin levels to be normal. She also had 6 month shots last week. She did great, is doing great on weight and jumped a line in length on the growth chart! So, yay!

Ashton's appointments were three weeks appart this time rather than four due to he doctor not be able to see her this month... so we saw a different doctor. This lady is the head of their CF Center. Ashton's weight and lenght were perfect, 15 lbs 3 oz and 25 inches.. this is a little over a lb and around an inch in three weeks! The goal is for her to gain between 15 and 21 grams per day and her average was 23! They did a cough culture which we should get the results of next week. They wanted to test her vitamin levels, but I told them that since I took her out of daycare, and she is no longer taking a bottle (I mixed the vitamin in her milk for school) I had been trying to figure out a way to get her to take it. The first week I was home she barely got it at all... but this week I figured out she will still eat her cereal if I mix it in. So, they are going to test for that next month.

There was one thing that was kind of disturbing to us this time. This doctor indicated that they would run the test for pancreatic sufficiency (to ensure that she is still digesting her fats properly) annually. We were concerned about this because we were told in the beginning, either you are sufficient or you aren't, based on your strain, and it doesn't change. You don't "become" insufficient. This doctor indicated that may not be the case. Since so few people with CF are sufficient to begin with, there is not that much information out there, and the possibility remains that some strains could progress to that eventually. The key to this is, if you will remember, Ashton's strain is very, very rare. Even more so than we thought. We knew there was only one case study, that one being in Czeckoslovakia (not sure I spelled that right, but you get the point), but we figured there were other cases that had just not had a case study done. Well, it seems that is not the case. She is only the second person in the world to have her strain. That being said, they really have NO CLUE, even less of a clue than we first though, how this is going to play out. If she were to start to become insufficient, testing annually will catch it early and allow us to take action before she begins to become malnurished. We can also look for the signs everday and have her tested if we feel necessary. This adds a whole new spin on things, as I had given up analyzing every diaper because we were under the impression she was and would stay sufficient. We are very thankful that the doctors are so in touch so as to not take it for granted though. I'll post about the results of the cough culture as soon as we get them. In all, this was another very positive appointment. Praise Him!

Other thoughts

I know most of you come here for updates about Ashton, and some of you for updates about our family in general. Since today, praise the Lord, there is nothing new to report about Ashton's health, and our family is just having an ordinary little life (nice change, praise the Lord again!), I wanted to share something else. A few years ago I read a book by Lisa Terkeurst (www.lisaterkeurst.blogspot.com) called "What Happens When Women Walk In Faith." Well, in that book it suggested keeping some sort of written record of your faith walk, even if it were just a journal that no one would see until you died. You never know who this could encourage in the future, to see how God has worked in you life. I have no doubt that our entire life, mine and Aaron's together and everday that led up to our "togetherness" has had God's hand all over it, and I have much to record. I thought "Oh, I can keep a journal." But God's voice deep in my heart kept pushing me toward the second suggestion in the book about keeping a written record... to blog, and publish it for everyone to see... oh, wait Lord, really? "Don't you want people to know what I have done for you, Faith" the Lord responded. But wait Lord, my FAMILY might see it! People I work with! My friends, people who have know me since kindergarten or before, not just strangers who need to know about you! At that time the only place to blog I new about was myspace, and that would just be wierd. So, I compromised with the Lord (how smart was I?) I set up a special myspace page, did not link it to my realy one, used a "pen name" and began to blog. I think I made two or three posts, good posts, but who saw it? My rationality was that the Lord would lead those there who needed to see it. And he could, and maybe he did, but was I really doing what He wanted me to do? Was that kind of a cop out? Fast forward a few years... haven't posted since right after we moved to Wynne... haven't forgotten about it, still had the prompting, but not doing it. Fast forward a little more, we have a sick baby, people want updates, and what are they asking for, a blog... hmmm... okay Lord. Do I think this is why Ashton is sick? absolutely NOT... do I think I maybe better start obeying.?.. a resounding YES. So, from time to time, you may get random "Faith's faith" thoughts on here. Like this one. My goal, my purpose in this life is to live in complete obedience to Him, and that is what this is... obedience to my Father. I will share what he tells me to. I pray that he guides my fingers as to what to type. I am no longer working... and though free time is still not abounding... I'm out of excuses.

family connection

One reason we were so blind sided by Ashton's illness is that neither of us had ever heard of it before, and it is genetic... so the chances of us going our whole lives and never knowing someone related to us that had it is very unlikely. Well, while at my parent's house this past weekend the phone rang. The person asked for my dad, and since people often call on the weekend wanting him to come fix something, my mom said he wasn't there... not knowing who it was and not wanting to disrupt a family gathering unless it was an emergency. It was an older man who was a first cousin to my father grandfather... my great grandfather. He died when my died was twelve I beleive. He was apparently very nice, and told my mom that he had heard about her grand-daugher and wanted to tell us that in the 60s he had had a daughter with CF. (My great-aunt later told me it was a grand-daughter... which makes more sense, not sure which one is confused, my aunt or my mom, but that is not the point:) Anyway... she passed away when she was fourteen. They spoke for several minutes about advances that have been made in the treatment. Then they hung up... one mystery solved. Aaron's gene is so mild and so rare, anyone that had it on his side probably never knew... so we won't either. Still, it really doesn't make much difference other than it is interesting... you learn something new everyday I guess:)

Treatments

So, some of you wonder what exactly we have to do differently with Ashton because of the fact that she has Cystic Fibrosis. Well, not much really, but we do have to do daily treatments. Twice a day she has to have two puffs on an inhaler. How do you get a baby to inhale meds from an inhaler? Whith a "spacer." This is a tube with a mask that the inhaler fits into. The medicine is the same stuff that is in Aaron's inhaler for asthma, Albuterol. We squirt the meds into the spacer, put the mask over her face, and watch a little flap that moves everytime she inhales. It has to move 10 times to insure she gets all of the medicine. Then we remove the mask, wait thirty seconds, and do it again. She usually hates it, but occasionally she just sits there and breaths. This is much better than having to use the nebulizer and sit with a mask over her face for 15 minutes. The purpose of this is to widen the airways so that the CPT (chest physical therapy) will be more effective. That is the part that was kind of wierd for me at first. We have a little rubber suction cup, looks kind of like a tiny toilet plunger without the handle, that we have to beat her with. Yes, that is right, we beat our baby. We call it "bopping" because it sounds better, and around our house we call this "doing Ashton's bop bop." We figure that sounds more "warm and fuzzy" as she is growing up and with Jackson now than "Let's give Ashton her treatment." So, we take this "bopper" and we bop her in 12 different places for three minutes each. That is four spots on her chest, two on each side, and four on the back. Often times she sleeps through it or will fall asleep during it, sometimes she will scream through the whole thing, but more times than not it is a combination of screaming, being content, and sleeping. It will only get worse as she becomes more mobile. When she is physically big enough, she will get a vest to wear that does the same thing with compressed air if I understand it right. I have never actually seen one, but I would imagine it would be better. I am about to post pictures of the inhaler, spacer, and boppers. We usually use two on her back and get two spots at once, and sometimes Aaron and I both do it and cut the time down. Instead of 36 minutes it might take 18 or 26... every little bit helps:)

Okay, just a quick update. We got the results of Ashton's cough culture from last week and it was CLEAN! That means the culture only grew the normal flora that a healthy person grows:) Praise the Lord! The last culture she had in the hospital is the first one that has ever come back clean... every other time she grew staph and a few times strep on top of that. We were hopeful after the one in the hospital came back clean, but there was a possibility that the antibiotics were only suppressing the growth, not killing the bacteria. It appears that is not the case, she is bacteria free! This it the only monthly test they do, just to stay on top of things:) Praise Him for great results!

Okay, so I haven't gotten around to taking pictures of the treatment "equipment" or making a video of the treatment, but I will try. I was looking at Ashton tonight and how she ADORES her big brother, and then at her fat rolls, and I feel so truly blessed. Ashton has dodged a HUGE bullet in that she is enzyme sufficient. I exchanged e-mails with a lady today who's daughter has to take the enzymes and she said that their drug bills top $70,000 annually! Only 15% of the people with Cystic Fibrosis are enzyme suffiecient. PRAISE HIM that we do not have to worry about meds with every meal, gaining weight, etc. Praise the Lord oh my soul!

Also, there is a new article out that can be read at cff.org. The article is very informative and discusses the very real likelyhood that in the next ten years CF will be a controlled disease, very similar to asthma! Woohooo... what wonderful news for the 70,000 people in the world who have CF and their families. Also, there are techniques out now that allow doctors to harvest eggs from women with CF, test those eggs, and fertilize and implant only those eggs that aren't carriers of a CF mutation! That means Ashton has the very real possiblity of eliminating the risk that her children will have CF, when before now her chance of having a child with CF was 75% if she married a carrier... they are making such progress... Praise God from whom all blessing flow!

Ashton had her monthly appointment at Children's on Wed. She will go to the pulmonary clinic once a month until she is a year old, then she will go quarterly for the rest of her life. Of course when she turns 18 she will have to go to an adult care clinic. At these appointments they basically weigh her and measure her just like at the regular check-ups all babies have. They also do a "cough culture." This is where they stick a swab to the back of her throat and gag her to get her to cough on it. It is NOT FUN. However, it is the worst part of the appt, so it could be worse:) They culture this to see if there is any bacteria the first couple of times she grew strep. However, the last time we were in the hospital they did one and it was the first one to come back completely clean! So, we are praying this one is clean as well. If she grows a bacteria, they may treat with oral anitbiotics (usually some form of amoxil) or if it is a bad one (I'll write more about those later) or she is symptomatic and they can't get rid of it, she may have to go into the hospital for IV antibiotics.

After the measuring and weighing (triage), we wait for a long time then we see the dr. She just asks questions and listens to her breathing. We also see a respiratory therapist who just checks on how treatments are going, and if we need anything equipment or med wise. Then we see a nutritionists who tracks Ashton's growth. At this appt her weight was 14lbs and 1 oz and she was 24 inches long. This is in what they call the green zone, 50th percentile or above, which is NO RISK! Great news! She also got great reports from the the doctors so this was a great appointment. I want to stress that the doctors are continually amazed at how well she is doing. Especially with her history of RSV, which can cause damage in babies that do not have CF, they expect problems with that. However, to date, there are none. They are somewhat shocked at her wonderful condition, but considering the God our family serves, we are not:) We are simply pleased and thankful beyond measure.

As I have time I will write more about her daily treatments, and some general information of CF that some of our family and friends might be worrying about. Also, Ashton hit a milestone this week:) We've been trying to make her laugh with no luck, we just aren't funny enough, until big brother got in on it that is.. Jackson did it! He was so excited.. he exclaimed "She likes me!" Love you guys... keep checking back...

music

Sometimes music says what we can't, and sometimes God speaks to us through music. Below are two songs that have spoken to me recently and that express how I feel... hope you enjoy;)

As you can see from the previous posts copied from myspace, we know we are all created for God's glory...and we are determined to use this for just that, and to teach Ashton to do the same. I am delighted to share this journey with you all. I can't wait to see what He has in store of each of our children:) As some of you have heard we recently spend a few more days in Children's Hospital. This was precautionary only. Ashton had a cold and since they do not know how her particular strain of CF will play out, they want to be extra careful, and we want them to be!

As for Jackson, he is getting so big! I wish all of you could see him and hear him. You wouldn't believe it. He is a precious little boy and a GREAT big brother.

last update on myspace... March 6th

Friday, March 06, 2009
same song, different verse
Okay, we've had a few days to digest Ashton's diagnosis now. I'm not sure I"ve really digested it at all really. I think I may still be in shock, so beware of the blog you may get when the shock wears off:) For now, we are just continuing to know that this is for His glory. CF is a genetic disease, and both parents have to be carriers for a child to have it. Therefore, the very fact that Aaron and I are her parents is what makes her "sick." Then again, when I think about it, the drs say she has gene "mutations" that she inherited from each of us. Who wrote our DNA? Who are we to question the Great Writer... the author of human DNA. If there is one thing that I know that I know other than Jesus Christ is the living son of God and died for our sins, and that I am going to the place He prepared for me, it is that He created Aaron and I for each other. Think about that... when He wrote our respective DNA, he wrote it with the other in mind, and the children that were created from it. Both of our children where formed in the secret place and their exact DNA that would be inherited from us was known from before time began. He chose us to parent these particular children and to guide them through their particular purpose on this earth. This event in our lives could very well be the beginning of the purpose for which our family was placed together on this earth. Who am I to question? Such things are too great for me know. I am so very, very thankful that she is currently symptomless and that she has NONE of the digestive problems that often come along with CF. We are going to ge diligent in doing what the doctors say to try to keep her healthy. I plan on blogging a little later about a conversation I had with the Lord the day I found out I was pregnant, but I need to pray about exactly how to word it first. Stay tuned if your interested:) (Yes, you read that correctly, a conversation with the Lord.)

update on myspace after the official diagnosis

Ashton test results
We now have an official diagnosis of cf for Ashton. Thank you all for you prayers and please don't stop now. We are going to use this for God's glory!

another update from myspace.... from Feb

Sunday, February 08, 2009
update on Ashton
As some of you may know we have been in the hospital with Ashton twice recently. Since the only updates a lot of you get are "through the grapevine" I thought I would post a little info here. At birth Ashton tested positive as a carrier for Cystic Fibrosis. They did a sweat test to determine if her sweat chloride levels indicated that she actually had cf. This is a diagnostic test and should tell you if a person has the disease. They tested both arms and to be positive your levels have to be above 60. One arm was 65 and on was 60.8. Normally if a child has cf they see levels in the 80s to 100s. So, we waited 48 hours and did another. Your levels have to be under 40 to be negative, between 40 and 59 is inconclusive. Her numbers this time were in the 50s. So, we are now in the 5th week of waiting for the genetic sequencing to come back and let us know whether or not she actually has cf. In the meantime, we have been told to treat her as if she does and we do an inhaler and cpt (chest physical therapy) twice a day unless she is sick, then it is 4 times a day. We were admited to Children's for evaluation of her and education for us to learn how to care for a cf child. Tues I took her to her pediatrician for a cold and ended up traveling by ambulance to Children's. (This was policy only, she wasn't actually sick enough to really need an ambulance. That is what they told me anyway.) She has RSV. This is not a fun illness anyway, and the presumption that she has cf made them even more careful. So, we came home on Friday. She is still very sick from the RSV, but she will recover. Nothing like a trip to Children's to show you just how sick your child is NOT. We continue to beleive that she DOES NOT have CF. She has NO symptoms, and apparently they are having trouble finding what they need to find to diagnose her officially anyway. Thanks everyone for your prayers, and we hope to update with GREAT news about how our God works soon!

Ashton's birth announcement on myspace

Mary Ashton is here!
Ashton was born at 7:53 pm on Dec 2, 2008. She was born on Aaron's grandmother's birthday (who' s name was also Mary, along with my mother and my grandmother). It was timing straight from the Lord. We took Jackson to school, went to the dr for our regular appt, and he said I was 4 cm! So, he sent us across the street to have a baby:) That was about 11:30. We called Aaron's parents, they came to get Jackson at school, and we called my folks and they came on. My brother had to work in Paragould that day ( about 20 minutes from Jonesboro, where we delivered) and he told Krystal (his wife) that he bet we have the baby that day so just come with him! So they got to be there too. Big Brother Jackson is beyond excited and loves her soooooooo much. I'll post more pics soon. Thanks to everyone for your well wishes, prayers, and support:)

first post

Hello everyone. We've had some requests to set up a blog to update on Ashton, so here we are. I'll use it for general Stewart family updates though, for anyone who is interested:) Leave comments often so I'm encouraged to keep writing. I'm going to start by copying over a couple of posts I made on myspace over the last few months to catch everyone up. I hope this is useful to those of you who have been faithfully praying for us. We are thankful and blessed to have so many prayer warriors on our side. We love you all!