Friday, May 15, 2009

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!

Wednesday, May 13, 2009

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 ( 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.

Saturday, May 9, 2009

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:)


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:)