Thursday, April 30, 2009

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!

Tuesday, April 28, 2009

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 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!

Friday, April 24, 2009

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...

Wednesday, April 15, 2009


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;)

Tuesday, April 14, 2009

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!