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

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.

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.

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.

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 :)