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Monday, March 31, 2008

Organ Donation

Well, if you haven't already read Tricia and Nate's blog yet, the lungs were "no good" (as he puts it). Thank you all who were praying that she would get her new lungs. I know she will soon, I just have a feeling. Unfortunately it didn't happen this time, but there is always next time. Please continue to pray for Tricia and the grieving family. Hopefully they were still able to save someones else's life with their other organs.
Are you an organ donor? I know I wasn't until I started reading Nate's blog. He encouraged me to take that very important step. I know that someday my son will most likely need new lungs just like Tricia. I encourage everyone to be a donor. You could not only save 1 life, but you could save 7 lives!! Isn't that a great way to be remembered? I hold comfort in knowing that someday I may save a life or two. Thank you Nate for opening my eyes =)
Nate made it so easy for me to find out how to become a donor in my state. He had a link that took you to it. It also had a postcard thing that you could send out to whomever you want, so they know that your wish is to be an organ donor. The postcard can also encourage others to become donors as well. I'll try to find that link for you if you are not already an organ donor. Please, please, please help save a life!!!

Ok, I found it. Yea!! Click Here to find out more about how to become an organ donor in your state and how to ensure your wishes are carried out upon your death. If you decide to be a donor or already are, Click Here to to send a family/friend notification card. For those who know my email address, please let me know (or send me a notification card) if you made the decision to become a donor. For those who don't know my email address, please leave me a comment letting me know. I'd love to know that I helped you make this very important decision.

Thanks in advance,
M

Sunday, March 30, 2008

Please Pray

I'm pretty sure most of you that are reading our blog are also readers of Nate & Tricia's blog, Confessions of a CF Husband, so this post is probably telling you something you already know. They got "that call" & I can only imagine what this long awaited night feels like for them. I won't speculate on what I think they might be going through. No one can ever really know how another person thinks or feels at a time like this. I just feel led to pray for them, that all the details come together so Tricia will get her new lungs tomorrow, that God will guide the hands of the surgeons, that the surgery will be perfectly executed & that Nate, Tricia & their families will feel God's comforting presence with them during the process. I am also praying for the family of the donor, that God would comfort them during this difficult time & that they would know Him or come to know Him through their experience. Who knows! Perhaps Nate & Tricia will have the opportunity at some point to lead them to the Lord.

So now that I've shared what's on my heart tonight I will go to bed early for a change & continue my prayer time there. Thanks & please remember to pray for Nate & Tricia tonight & tomorrow! D.

We've got our own domain name!

So my husband is a little bit of a computer geek....well both of us are I suppose but as professions go it hasn't been a half bad deal for us. The personal upside for me is that my husband is always looking for ways that technology can enhance our every day lives. Yesterday he decided that our little blog should have it's own domain name to make it easier for people to get to us. So thanks to my husband "S" you now only need www.acure4lilchris.com to get to our blog. Woo hoo! Thanks S...hope you're enjoying your mid-afternoon nap while I'm keeping an eye on the kids! (He's going to just love that when he sees it!)

Hope everyone is having a nice weekend! Here is a cute pic of Lil Chris that I took a couple weeks ago when they were visiting. He's such a cutie pie, isn't he? D.

Saturday, March 29, 2008

Susanna's Story

I know I said I would wait for M's approval before posting Susanna's story but I know she's busy with Big Chris' family this weekend & I have no doubt she will be happy I didn't wait to post it!

Susanna sent this as a comment to us last night & as soon as I read it I wanted to share it with all of you. I was so blessed by her positive spirit & obvious devotion to her family & I was thrilled when I got to the end & saw she had given me permission to share her story! The Lord's timing is always amazing. If the events of yesterday hadn't occured we might never have connected with Susanna. What some of you won't realize right off the bat is that she & M are the same age. Obviously they have much more in common as well. I hope you will add Susanna's family to your prayer time as I have.

Susanna, congratulations on your new baby boy! I pray that the rest of your pregnancy is enjoyable & uneventful!! Please continue to share your story with us & we will share it on our blog!

Dear Dear M, Hi. I just found your blog tonight and there are so many things that I would like to say to you that I'm afraid I won't remember everything long enough to say it like I want to, but here's my try:-)
First, Lil' Chris is absolutely adorable!!! (I could say that over and over and not feel like I've said it enough:-) To see his smiling face no one would ever pick him out as having a problem.

Second, an introduction. My name is Susanna. I am 27 years old and the proud mom to 4 extremely active, beautiful, high energy (I said active and beautiful didn't I? :0) children, 3 of whom have/had CF. Like with lil' chris, no one would ever have a clue that they have a care in the world. As a brief background,we had no warning about the possibilities of CF in our families. So when our Timothy was born 3 weeks early with a ruptured colon (due to a mucus plug) we had no idea what was going on. Obviously we got the crash course on CF. Our little Timothy survived and thrived and lived an awesome "Normal Life" (I'll come back to that comment later) We dealt with treatments, meds, the colostomy (from the ruptured colon)...we took it all. Oh we had the emotional bottoming out, but (short version) we came to the conclusion that we'd deal with it, do everything the best, and give him the absolute best life possible. And as others have stated on your blog, we are believing and working for a cure, with the advancements made in the last 20 years...by time our children are 20 years old...(but I'm getting ahead of myself)

Third, I have to tell you that when our Timothy was 6 1/2 months old he was doing awesome and it was decided the colostomy could be reversed. We were thrilled. Unfortunately something botched up with the surgery, the stool seeped back into the abdamon, the infection got into the blood....We lost Timothy at 7 months and 2 days old. (It's a longer story and I don't mean for anyone to think I can tell it so bluntly or without feeling because I assure you that is far from the case.) He was our only son, our first born, our life. And he is still missed terribly even though Dec. would have seen his 5th birthday...

Fourth, (I'll go on with my list) We decided to have more children. Here's a couple reasons why. One reason was... When we were in public we would see people that were severly crippled, mentally retarded, or be extremely deformed. I distictly remember looking at my husband and saying, "There are some things a whole lot worse than CF" People with CF can live extrememly productive, full lives. They can go to college, be very intelligent, become the doctors and researchers themselves, even have there own families (the list could go on and on)...they can make an awesome impact on the world! A second reason...Even while Timothy was still with us, we decided that we never wanted to tell Timothy that he "Can't have any brothers or sisters because we don't want to take the chance that we might have another one as "Bad" as him". We never wanted him to feel that 'what he had' was soooooooooo terrible. After losing our precious son we still decided the joy and fullness of his life far outweighs the pain and sadness of losing him. Even at only 7 months old his awesome little smile and friendly ways had touched thousands of people. (Seven hundred friends and family were at the funeral alone.) We feel our baby Timothy lived a very joyful, full life.

Now, Timothy has 3 siblings (and a fourth on the way, though this little guy was a bit of a surprise). Our boy, N__, is not even a carrier! (go figure...from one extreme to another. but we are very thankful to God for that blessing) J__, our "Little Princess", has CF and had a pretty rough first year with failure to thrive and lung issues, but for the last year and a half... only in the hospital once, putting on weight, and a gorgeous bundle of sweet energy!!!! C__ also has CF, but has done great so far. No hospital stays, no lung infections, a typical 9 monther that's starting to take her first steps!! She's a fat "Little Miss" and the first to have her daddy's brown hair and eyes that look like they're going to turn brown(Like his:) (All the others have my blonde hair and blue eyes:-) (But they ALL have had their dad's cowlick right in the front of their hairlines!!! Thanks alot dad!}:0) And back to the 'fat' part, all of us CFers know how we CHEER fat rolls!!And oh, how they LOVE each other! If one stays the night with other family, the other is constantly wondering where __ is and how she/he's doing and can we call and talk to them....they are best playmates.

Now, there's NEW Baby Boy... I realize reading this you may think that I'm not taking the disease serious enough, but please believe me, we do. When I found out I was pregnant this time, I cried, a lot at first. I just wasn't sure I could deal with the possible pain again. I haven't been down the whole CF road yet...I don't know the future for each of the children... but what I do know is that God has given us another special gift, this time a little surprise, and...you guessed it... we are going to help him life to his fullest potential with or without CF.
There's a whole lot more I could say, (and yes I know I've already written a ton...is there some kind of award for the longest comment? :-) Let me just encourage you. (1) Hang in there. Even though I talk of "living life to the fullest" that doesn't mean that you have to take him to the petting zoo at 9 months of age! But it also means that you don't have to only go to Wal-mart at midnight for the rest of his life just to keep him from the crowd. (2) Enjoy being "mom" to an incredible little boy and remember "you are the mom" you can most likely trust your instincts.(3) It's true some people understand better than others, but don't get too discouraged with those that don't understand now, they (especially if we're talking family) will probably come around. (Let's just hope it's before 2048:) (4)You have one incredibly handsome little man in Lil' Chris:-) (I had to say it one more time:)

Our prayers are with you, and our support behind you, Susanna and family

PS You are welcome to do whatever you would like with this 'comment', I know it's long. But if you erase it could you at least refer to it directly in a post so that I at least know that you got it. If you don't mind it being read, I don't mind it being posted. I'm new to the blogging world and don't even have my own blog, but it is very encouraging to find others that are going through some of the same things we are. This might be too much to ask, but if you wanted to copy and paste the comment into one of your actual blogs, I'd really like to know your thoughts, and your many friend's thoughts about what I've shared. Thanks for your time.

A New Day!

Thank you to everyone for your kind & encouraging comments!!

Today is a new day, the sun is shining (where I am) & the slate is wiped clean! Spring is my favorite season as it always generates feelings of renewal & growth. This is also the time of year when I get the itch to get outside & stick my hands in the dirt! =)

To Susanna who left us a beautiful comment last night, your prize for the longest comment is....(drum roll please).... a virtual high five! Great job! Our comments are now moderated, not immediately published & I'm not sure if M saw yours this morning, so I sent it to her in e-mail. With her permission (which I'm sure she'll give) & yours I'd really like to publish your story as a post on our blog so everyone can add you to their prayer time & be encouraged by your words.

Wishing you all a wonderful weekend!! D.

Thursday, March 27, 2008

Let's Learn About CF - Part 3

How is CF diagnosed? As in my previous "Let's Learn" posts my source is cff.org.

Most people (these days) are diagnosed with CF at birth or before the age of 2. A doctor who sees the symptoms will order either a sweat test or a genetic test to confirm the diagnosis.
A
sweat test is the most common test used to diagnose cystic fibrosis. A small electrode is placed on the skin (usually on the arm) to stimulate the sweat glands. Sweat is then collected and the amount of chloride, a component of salt in the sweat, is measured. A high level of chloride—a score of more than 60 mmol/L (a measure of concentration)—means that the person has cystic fibrosis. Scores between 40 mmol/L and 60 mmol/L are considered to be on the borderline and need to be looked at on a case-by-case basis. Scores of less than 40 mmol/L are considered negative for CF. The best place to receive a reliable sweat test is at a Cystic Fibrosis Foundation-accredited care center.
In a
genetic test, a blood sample or cells from the inside of the cheek is taken and sent to a laboratory to see if any of the various mutations of the CF gene are found. A genetic test is often used if the results from a sweat test are unclear.

Fortunately for Lil' Chris he was tested right away because the doctors knew both of his parents were carriers of the CF gene. M will elaborate more on this as she tells their story. The reason I say fortunately is because the earlier a child is diagnosed the better. It's so easy for CF babies to become malnourished if they are not being treated for their CF. Not because their parents aren't feeding them enough but because their little bodies just aren't absorbing the nutrients from their food. Lil' Chris started his treatment at just 2 weeks old which enabled him to grow at a more normal pace. I remember M telling me that the doctors were particularly happy with his length at his checkups each month because the taller he grows the more length he'll have in his torso & the better he will be able to breathe when he's older. That just blew me away. There are so many things to think about, so many areas that are impacted by this disease & so much that early diagnosis can help with.

I am now a huge proponent of parents being tested to see if they are carriers. I'm not saying this because I would recommend two carriers not to have children - that is a very personal decision to be made (with much prayer) by that couple & no one else. I am saying this because if you know you are both carriers then your child can be tested & possibly treated right away which can make a big difference. Never in a million years would I have thought that my sisters & I were carriers of a disease & yet, here we are. Thankfully our state now requires CF testing during pre-natal care but what about the states that don't? What about those who don't get the pre-natal care they need? These reasons as well as support for our little nephew are why my family & I are walking for Great Strides for CF this May. Not only do we need to raise money for CF research & financial support for CF familes, but we need to raise awareness about this disease! I encourage you to click on this link for GREAT STRIDES and look for a walk near you. We can all make a difference in our own small way & it's not just about the money. It's about getting people's attention. It's about being the reason that when a pregnant mom get's that call from her OB she recognizes what CF is & why it's important for the father to also be tested. It's about getting our corporations involved & walking for a cure! It's about showing our love & support to our friends or family who bravely & gracefully live everyday with CF. Walk for Lil Chris, walk for Tricia, walk for Alice, walk for Lauren, walk for Carmen, walk for the many others who need our support!

Thanks for your time tonight! D.

Wednesday, March 26, 2008

Hooked

You know, it's funny, even though I contributed to the beginning of this story I find that I'm as hooked on the new M & Big Chris updates as everyone else reading this blog! The interesting thing I think both M & I are finding is that it's much easier to share the little details about how we felt/reacted during those days in writing than it would be for us to share them in person. I'm finding out along with you the "inside story" about what my sister & her husband went through & my respect for them grows with each post. I have a much bigger mouth than M does by a mile but still none of us girls have ever been big on talking about how we feel. It gives me the shivers just to see the line "talking about how we feel" typed out! I know though that I've been a lot more open in the telling of this story as I've typed it & it's been cathartic. I saw M said in one of her comments that it's been a bit like therapy for her too. So thank you for allowing us to share with you & in so doing work out some things in our own minds.

I don't remember when it was that M called me to tell me about Big Chris' results but I do remember several conversations we had over the next few days about what they should do next. My heart was breaking for them but I wanted to be a sounding board for M to talk about what their possible options were & I tried to be as honest as I could. As M stated in her post, some of the things they had to consider were adoption, sperm donors, egg donors or in vitro. M may not have clarified this last option for you because in her mind in vitro was never really an option but I want to clarify it so there is no confusion about where both of us stand on this issue. Once M understood what the in vitro process involved - fertilizing eggs & then having them destroyed for being less than perfect - she vehemently opposed that as an option. Life is a precious gift from God at all stages. I know that's not a popular stand to take in this day & age but take it we will! It never ceases to amaze me that to honor life is ridiculed in our society today. Where have we gone America & how can we get back?

Thanks for listening tonight...please pray for M & Big Chris this week that all who are with them are healthy & that they have some great family time together! D.

Visit Time!

I'll have to leave the blogging up to my sister for the next few days. We are getting a house full here in a couple of hours. My mother and father-in-law, my sister-in-law and her husband, and their 3 little boys. Their ages are 9, 2 1/2, and 1. We'll all have our hands full with 4 boys in the house =) Please help pray that they have a safe trip and that all are well and we all have a great time :)

Tuesday, March 25, 2008

Great Strides Update

Well, he didn't call. So I took the advise from a commenter and called him myself (thanks com mentor for telling me to call, because I probably wouldn't have). He gave me names of 2 event directors that I can work with. One of which may come with him to our meeting on April 8th at 11:00am. I can't wait! They are going to go over a lot of info with me that can help me get this walk started. He said we need to develop a committee to help run the event. I have no clue who I can get to help me with that. I don't have any family that lives near me. I do know one person who might help out. She is a CF mom of a 2 year old here in my town. I met her through our CF Clinic. She comes over every now and then so we can chat.
We are also going to have to decide on a location and a date. He said fall would be best. May is too close to do one, so he suggested September. I already have a location and date in mind and some other ideas. I'll let you know how our meeting goes on the 8th.

Our Options

To start at the beginning of the story, click.....
1. The Beginning of it All
2. The Nagging Begins
3. The Nagging Continued
4. The Phone Call

While sitting by my sister-in-laws bedside, my cell phone rang...... it was the call that we dreaded even more than the last phone call with blood test results. Why? Because we knew that is was ok if just one of us was a carrier, but if both of us were carriers then we would have to stop trying to get pregnant and start looking at....
1. adoption
2. sperm donor
3. egg donor
4. invetro where they test them for CF before insertion (all very expensive options)
This is why it was so hard waiting for the results, because we both always wanted to have our own children. Not that we don't like adoption or anything, it's just that.........well, it's hard to explain. In a way, I guess, you just get curious as to how they will turn out. Will they have my eyes, my smile, my great sense of humor =) or will they have my husbands astonishing good looks (you're welcome honey=).
So, we thought back and forth what we would do. Never really coming up with a decision, other than stop trying to get pregnant. We knew for sure that we couldn't live with ourselves if we did this on purpose. We couldn't look into their eyes when they were having a difficult time breathing, without thinking "I'm so sorry, I don't know what we were thinking".

Well, the lady on the phone said that his test was positive, he was a CF carrier. And my heart sank yet again. The worst part was, that now I had to somehow break the news to my husband. (Wow, I just typed that last sentence looking up the whole time trying to hold back the tears.) I just remember how hard it was for me to look him in the face and tell him. I knew he would be devastated. He had wanted children ever since we got married. I was the one that wanted to wait a couple years. Here it was 3 years later and I had to tell him that we would never be able to have our own children. He would never get his Lil' Chris.

The News

Monday, March 24, 2008

Great Strides Update

Well, I was supposed to get a phone call today to get more info about starting a walk in my town, but I didn't. Although, now that I think about it, I remember him saying that he would either call Monday or Tuesday. So, hopefully I'll get a good call tomorrow =) I'll keep you updated.

The Phone Call

For the first part of this story, start here..

1. The Beginning of it All

2. The Nagging Begins

3. The Nagging Continued


So we knew that my 2 sisters, my husbands sister, and I am all CF carriers. What we didn't know was if my husband is a carrier. Since my sister is so good at being a big sister, she insisted my husband get tested right away since we were trying to get pregnant. So, on Tuesday, September 19th 2006,he got his blood work done. That Friday the 22nd, we left to go on vacation with D and her family. We had a blast! Having fun with my nieces kept our mind off the tests we were waiting for. Honestly, we really didn't know what the outcome was going to be. All we could do was pray that he wasn't a carrier, because we desperately wanted to have our own children. On Thursday the 28th, we left to go visit my husbands sister in the hospital, because she had just had her second baby. Yea!! The very next day, on September 29th 2006, while sitting at my sister-in-law's bedside in her hospital room, my cell phone rang.....

Our Options

Sunday, March 23, 2008

HAPPY EASTER EVERYONE!!

Saturday, March 22, 2008

Little Sisters Are So Funny

So now you know then. I have the worst memory of a thirty-something Mom ever. Most days I can barely remember what I did the day before let alone details from a few years ago. My kids make fun of me about it all the time. =) On top of that my mind plays tricks on me with details that I do manage to remember. I was so sure I had talked to M before my husband went for his test. Apparently the conversation I remember happened when I called to tell her that my husband's test was negative. Sometimes I think I'm losing my mind. =) M's memory is way better than mine so I'll always defer to her details of The Story. She was right that I am not typically an alarmist with the family...I wait until I have all the details before I upset anyone so her version of events makes perfect sense.

I knew of course that M was tuning me out as I nagged (yes, it was definitely nagging) her about getting tested after that but she underestimated just how persistent I can be! Looking back now, I can't say what I thought would happen (besides praying that one of them would not be a carrier) once both M & Big Chris were tested. I just felt that it was so important for them to at least know. I am not big on surprises. To have information is to be prepared but the knowing is so hard sometimes...

Great Strides - Taking Steps to Cure CF

I have GREAT news!! Thanks to Nate and his blog (cfhusband.blogspot.com), I was encouraged to make a call to try to get a Great Strides walk(a fundraiser for CF) started here in my town. Thankfully, I talked to the right person and now we may even be able to have one as soon as June of this year! I thought maybe it was too late for this year, but he said that they have been wanting to do a walk in my town. It's not like they have a list of who has CF in what town, and how many, he said. He also said that most walks start by someone calling in and asking to start one in their town. I told him I knew of a few people in our town that has CF. So, he was very excited to get my phone call. He is going to call me on Monday with more details and to maybe set up a time when we could meet and go over things. He is also going to send me a packet that explains everything.
I can't wait for the walk! It is going to be so much fun! I have so many ideas already! I'll let you know the details when I get them. Hopefully you can come and join us or sponsor me. I wonder what I should set the goal at? Any ideas? I'll be glad with whatever amount we get, b/c I know every little bit will help save my baby's life (or at least make it better).

The Nagging Continued

Please read first - The Nagging begins...

At this time, I still didn't know what CF was. All I knew, was that it was a genetic thing and it was a bad disease. What disease isn't a bad disease? So, I started to listen to D a little bit more. She knew a lot about it, because she had researched it when she thought her son might have CF. She told me that if my husband and I ARE both CF carriers, then there is a 1 in 4 chance that our children might have CF. I still wasn't really listening to what CF was, maybe it was denial, or maybe I just didn't think it would ever happen to us. But something made me call and make an appointment to get some blood work done to find out. Maybe it was all the successful nagging :) Or maybe, she got me curious to find out, since we were trying to get pregnant again. I thought, maybe this will get her off my case, because it can't be true that we are both carriers! What are the odds in that happening?
So, I went to the doctors on September 1st 2006. Yes, I keep track of everything! I'm a lot like my dad, thank God (just kidding, mom). I actually think that's why I'm such a strong CF mommy today (thanks dad!) Okay, back to the story.... Then, on September 13th, the phone rang. It was the phone call I had heard so much about and didn't want to get. They said that I was a carrier of the most common type of CF. Of course, my heart sank. "What if D is right? What if we ARE both carriers?"

The Phone Call

The Nagging begins....

So, D's husband was not a carrier. Since both parents have to be a carrier in order for the child to have CF, they were in the clear. Yea!!

After the big scare, D called me and told me that she was a CF carrier and that I should get tested. My reaction..."Oh yeah?". (Not really listening). Then she called again saying that she found out that my other sister was a carrier too and, of course, that I SHOULD GET TESTED (starting to sound like a broken record). My reaction again..."Yeah, maybe"(with no intention whatsoever). You see, I knew if I came out and said NO, she would just push more because she was just trying to look out for us. Not worth it, so my reaction was always the same. So every time she called to nag, I really wasn't listening at all. I would kinda just block her out. Sorry D ;)
Then, one day when she called me again to nag, for some reason, I was listening to when she said Cystic Fibrosis. I thought, "Hey that sounds familiar". I told her that I thought that was the same thing that my sister-in-law was tested for with her first child. So, of course she got even MORE worried! Then I said to myself, "Oh man, why did I say anything. Now she is going to bug me even more!" She INSISTED I find out for sure. So I asked the next time I talked to my sister-in-law or my mother-in-law (can't remember which one now). They said it was the same thing and that my sister-in-law IS a CF carrier. By this time, I started remembering the scare that her and her husband had, then started thinking of the scares both my sisters had. And then, the words my sister said when I told her that my sister-in-law was a carrier too, started sticking in my head...."If his sister and your 2 sisters are all CF carriers, then most likely you both are carriers as well."

The Nagging Continued

The Reason Why I Blog

There are many reasons why I am going to blog about my son, who has Cystic Fibrosis....
1. To bring awareness about CF
2. To raise the improtance of organ donation
3. To help people understand CF more
4. To get things off my chest sometimes ; )
5. To let far away family know how Lil Chris is doing
6. To help new CF parents
7. To keep a diary of Lil Chris' life, so Lil Chris can one day look back on this
8. So other new CF parents won't make the same mistakes we did
9. To tell our experiences with CF
10. To get as many people I can to pray for Lil Chris
11. To get people to understand the importance of CF research
12. To help get donations for CF research to find a CURE!!

Let's Learn About CF - Part 2

Tonight we're going to learn about some of the symptoms & effects of CF. My source is cff.org:

The severity of cystic fibrosis symptoms is different from person to person. The most common symptoms are:
  • Very salty-tasting skin
  • Persistent coughing, at times with phlegm
  • Frequent lung infections, like pneumonia or bronchitis
  • Wheezing or shortness of breath
  • Poor growth/weight gain in spite of a good appetite
  • Frequent greasy, bulky stools or difficulty in bowel movements
  • Small, fleshy growths in the nose called nasal polyps

Sometimes people are told they have asthma or chronic bronchitis when they really have cystic fibrosis. New research shows that the severity of CF symptoms is partly based on the types of CF gene mutations (defects). Scientists have found more than 1,500 different mutations of the CF gene.

How does CF affect the lungs?

Scientists have many different ideas about what goes wrong in the lungs of a person with cystic fibrosis, but it all begins with defective CF genes. Normally, the healthy CF gene makes a protein—known as CFTR (Cystic Fibrosis conductance Transmembrane Regulator)—that is found in the cells that line various organs, like the lungs and the pancreas. This protein controls the movement of electrically charged particles, like chloride and sodium (components of salt) in and out of these cells. When the protein is defective, as in cystic fibrosis, the salt balance in the body is disturbed. Because there is too little salt and water on the outside of the cells, the thin layer of mucus that helps keep the lungs free of germs becomes very thick and difficult to move. And because it is so hard to cough out, this mucus will clog the airways and lead to infections that damage lungs.

It all seems so very clinical & far away when you read it like this, doesn't it? One of my favorite blogs that M introduced me to is Confessions of a CF Husband. Nate & Tricia's story really helped me understand so much better about the life of a person with CF. And when I say life, it's truly about life & not just about CF. I was so focused on all the symptoms & statistics & predictions I had been reading about that I hadn't stopped to think about the life Lil Chris will lead. Yes, CF will always be a part of his life but it doesn't have to be his whole life. I am so encouraged by Nate & Tricia's story of love & laughter admist even the hard times. I look forward to hearing the updates on the progress of their beautiful little girl & I pray for them daily. If you haven't seen their blog already, I hope you will check it out & pray for them also.

Lets Learn about CF - Part 3 coming soon...

Friday, March 21, 2008

The Beginning Of It All

I thought I'd introduce myself before I start telling my story. I'm M (apparently) and my husband is Big Chris (apparently). :) We have a 9 month old son named Christopher (after his Daddy), but we like to call him Lil' Chris. He was born with Cystic Fibrosis. That's all you're getting for now. I have to start the story somewhere! I might as well start from the beginning.

In the beginning God made the ......wait a minute, wrong story. Sorry, you'll have to get used to my sense of humor. Okay, well D got most of the story right, but here's how I remember it....

It all started about 3 years ago. I never really heard of Cystic Fibrosis (CF) until my sister-in-law got pregnant. She had the usual blood work done and didn't think anything of it (like D) until she got that phone call. She was a carrier of CF. Like D, I apologize that I was not as supportive when she got the news as I should've been. I guess I just didn't realize what CF was. I just remember feeling bad for them that they had to go through this and I just prayed for them that the baby wouldn't have it. So, her husband got tested, and thankfully he was not a carrier. This meant that the baby could definitely not have CF. Yea!!

I never heard the words Cystic Fibrosis mentioned again, until about a year and a half later when my oldest sister got pregnant with her 3rd child. She got that phone call saying she was a CF carrier. I must apologize to her as well for not being there for her like I should have. Actually, I think she didn't tell me about it until after her husband got tested. Thanks a lot D! Just kidding :) It's hard sometimes, because we live so far from each other. Knowing her, she probably didn't tell me until afterwards, because she wouldn't have wanted me to worry. She's the type of person that always thinks of others before herself, just like how she started this blog to help my son and other people out there who may be in the same situation.

Then started the nagging for me and my husband to get tested......

The Nagging Begins...

M

Thursday, March 20, 2008

Now I'm on a mission

Once the shock of mine & C's diagnosis as CF carriers wore off, my prevailing concern was for my youngest sister M & her husband who were trying for another baby. I desperately wanted her to go & get tested & then of course for her husband to be tested as well. M is a very calm, cool, laid back kind of person & so is my brother in law. My sense of urgency for them was just not urgency that they felt. I'm sure she will chime in soon & tell you how I was driving her crazy! =)

I don't remember the exact details of how this next milestone came about but I know it was about 3 months after my diagnosis. M found out that her husband's sister, who was pregnant with her second child, was a carrier of the CF gene. I don't know how long M knew before she told me but I'm sure she knew what my reaction would be. I begged & pleaded for them to go & be tested. Just to be prepared I said, just to know what the possibilities were. M always maintained that it didn't matter to them. It wouldn't change anything.

Here I will change direction for a moment & tell you a little bit about M & Big Chris. This is important because it is the foundation for what you will learn through the rest of The Story. M & Big Chris met as teenagers, only recently did I hear the whole story of their first date, perhaps M will tell it to you one day. They have been inseparable ever since. They truly are one another's best friend. I am humbled by the love that is so evident in their relationship. Don't get me wrong, they're not the super demonstrative, lovey dovey type around people. It is the little ways they have with each other that let you know where they stand. They consistently put each other first, always thinking about what the other might feel, want or need. Two more in-sync people I have never met. They are not big talkers in general & certainly not about how they feel for each other. Their actions demonstrate that they face the world as one entity, supporting each other, firm in the belief that they can handle anything as long as they are together & obeying God's will in their lives. It has been an honor to watch them grow as a married couple, loving one another & serving the Lord.

Okay, back to The Story....I don't know what transpired to convince M & Big Chris that it would be beneficial for them to find out if they are carriers but, to my unending relief, M scheduled her blood work. (They will only test the husband if the wife's test comes back positive.) As we expected, it was positive that she is also a CF carrier. She took it in stride as she does everything & made an appointment for Big Chris to be tested.
My husband & I make it a habit to take our kids on one big vacation every year and often times M & Big Chris will come with us. We all love it when they come & that year, in the 7th month of my pregnancy, we went to Disney World. A little while prior to the trip Big Chris went for his blood work. You would never have known that the two of them were waiting for such a potentially life altering test result. They had a blast! Going on all the rides, playing with my kids, picking up the slack for my pregnant self & just generally enjoying their vacation. Or at least that's how it seemed to me. I love them for that... Have I mentioned that my Brother in law is great with kids? He loves mine like they were his own & so does my sister. Since the day they started talking about getting married he has talked about having kids. It was so obvious that he couldn't wait for the day when he could hold his own child in his arms. I always thought it was the sweetest thing. My heart broke for them when they miscarried their first pregnancy and I knew how much he wanted to have another child. I felt at that time that it was like the end of the carefree innocence of their youth. The harsh realities of life had hit them early & I was sad for it. I prayed & prayed that his test result would come back negative. I desperately wanted them to be carefree again...

Thanks for listening! D.

Let's Learn About CF - Part 1

One of the things we were surprised to learn in those early days was how common the CF gene really is. Approximately 30,000 people in the United States have cystic fibrosis. An additional ten million more—or about one in every 31 Americans—are carriers of the defective CF gene, but do not have the disease. You could be a carrier of CF even if no one in your family has CF and even if you already have children without CF. About one of every 30 Caucasian people (about 3 in 100 or about 3%) carries the defective gene. If your family background is not white, your chance of being a carrier is less than 1 in 30.

What causes Cystic Fibrosis you may ask? Here is an explanation from cff.org that really helped me understand:

"Cystic fibrosis is a genetic disease. That means people inherit it from their parents through genes (or DNA), which also determine a lot of other characteristics including height, hair color and eye color. Genes, found in the nucleus of all the body's cells, control cell function by serving as the blueprint for the production of proteins.
The defective gene that is responsible for causing cystic fibrosis is on chromosome 7. To have cystic fibrosis, a person must inherit two copies of the defective CF gene—one copy from each parent. If both parents are carriers of the CF gene (i.e., they each have one copy of the defective gene), their child will have a 25% chance of inheriting both defective copies and having cystic fibrosis, a 50% chance of inheriting one defective copy and being a carrier, and a 25% chance of not having CF or carrying the gene."

CF carriers do not show CF symptoms themselves, but can pass the problem CF gene to their children. So for my sisters & I, apparently one or perhaps even both of our parents were carriers of the CF gene.

So what does it mean if someone has CF?

Cystic fibrosis is the most common, fatal genetic disease in the United States. CF causes the body to produce thick, sticky mucus that clogs the lungs, leads to infection, and blocks the pancreas, which stops digestive enzymes from reaching the intestine where they are required in order to digest food.
I will elaborate more on the symptoms of CF in Part 2.

Wednesday, March 19, 2008

My first encounter with CF

I know it seems odd for me to start this story talking about my own personal experience but it will make sense later on as I develop the story for you. I apologize in advance for the novel that I've written on this post!!

It was my fourth pregnancy & the beginning stages of my pre-natal care with this child. This pregnancy had been different than the others from the very beginning. I was three months along & instead of being horrendously nauseated with morning (all day) sickness, I was ravenously hungry all the time & barely nauseated at all. Having miscarried my first pregnancy, I was very nervous at this change in what I knew to be standard pregnancy issue for me. Fortunately I had an early ultrasound but I won't bore you with the reasons why. Suffice it to say, the ultrasound showed the baby as being right on track and alleviated my mind a great deal. As all pregnant women do, I went for my battery of bloodwork that week & never thought another thing about it. I had two other kids to take care of & no time to worry over bloodwork that in my mind would be perfectly fine.

It was a complete surprise a few nights later when I listened to the messages on my answering machine & heard the voice of my Nurse-Midwife. It took a moment for the words she said to register in my mind. I played the message back & heard her say "Your bloodwork came back & showed that you are a carrier of Cystic Fibrosis. You'll need to bring your husband in for some bloodwork to see if he is also a carrier...". She went on & said other things but I couldn't tell you what they were. All I heard repeating in my head was "you are a carrier of Cystic Fibrosis" over & over. Immediately followed by "How can this be? I've had two other children & never heard a thing about this...". As it turns out, my last pregnancy three years earlier, was prior to the mandatory CF testing.
I am not a hysterical person but I called my husband that day about as close to hysterical as I get. Tripping over my words & trying to Google this unknown disease on our kitchen computer while I was talking, I felt fear wrapping it's hands around my heart. By the time my husband came home that night, I had pulled myself together & could talk about things somewhat rationally. The fear was still with me though. We both had done plenty of research by that point & knew what it would mean if he were also a carrier.
I have to stop here & offer an apology to my younger (middle) sister. (I don't like to use full names online, so for the purposes of this blog we will call her "C") She had just had her first baby a few months earlier & said to me "Don't you remember? They tested me for this & I was positive as a carrier too." To this day, I have no recollection of her sharing that with me. It has bothered me since we spoke that night that I could be so insensitive at a time when she & her husband undoubtedly went through the same experience that I talked about above. So, one more time, I offer my apology to C & her husband for not being more supportive to them during the early days of her pregnancy when they received this same news.

As for the story.... It was a stressful couple of days for us. Full of prayer for this unborn child and that ever so human inner struggle to accept & submit to God's will in our lives even if it wasn't what we wanted it to be. Fortunately for us, as it was for my sister C, my husband is not a CF carrier. I don't think I can describe the relief & profound thankfulness to God that flooded my being when we received the results. I couldn't wait to call & share the news with my sisters...

On the heels of that great joy however, came concern for my youngest sister, M, who had recently miscarried her first pregnancy & was actively trying to get pregnant again. The prevailing thought was, if C & I were carriers, in all liklihood M would be too...

Thanks for listening tonight....I'll catch up with you again tomorrow.

For more, click....Now I'm on a Mission

Tuesday, March 18, 2008

About Lil Chris


This is my nephew who we affectionately call Lil' Chris.

Adorable, isn't he? We all just love him so much...



Which leads me to the purpose of this blog...

Lil Chris was born with a genetic disease called Cystic Fibrosis. In short, CF is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). I will expand more on this later. For more information now, click on the link above.

My goals with this blog are (1) to raise awareness about Cystic Fibrosis and the importance of organ donation and (2) to ask for your prayers for Lil Chris and the scientists who are searching for a cure. Such amazing strides (you'll see this mentioned again later) have been made in the research & treatment of CF just in the past 10 years that I firmly believe, through the hand of Almighty God, a cure is possible in Lil Chris' lifetime.

Thanks for taking the time to visit this blog. I look forward to sharing this story with you in the coming weeks.

D.

My first encounter with CF