Will you walk for him?

***UPDATE:  Several people have asked about registering as a family for the walk or registering their kids. Please note that everyone participating in the walk MUST be registered. If you have already registered and you plan on bringing a spouse or child that is not registered, let me know and I'll get you taken care of. If you have not yet registered and would like to register as a family without having to do so on an individual basis, please note that you can do so on the webpage after you have entered in your initial contact information. The following page has an option to "Register a Family Member." You can use this option to register your spouse or kids under the same user name/email address/ect. 

Will you walk for him? 

Will you walk for this dude?

Join us. Please. 

It's only two miles! 

And it's a walk, not a run! 

On May 17th. 

Walk for him.

For Crosby.

The Cystic Fibrosis Foundation's Great Strides Campaign is an event to raise funds for CF. The walk is Saturday, May 17, 2014 in Little Rock.

You can either join The Crosby Show for the walk or simply make a donation to anyone already signed up to the team. To sign up, just follow the link below to visit my Great Strides home page and click on "Join My Team!" Then, follow the step-by-step instructions to register for the walk.

http://fightcf.cff.org/site/TR/GreatStrides/9_Arkansas_Little_Rock?team_id=14902&pg=team&fr_id=1919

Lance and I will be there. Crosby himself has even agreed to making an appearance. It would mean the world to us if you guys would sign up. Only a hand full of our friends and family have registered after this post. But we want ALL of you there. Lance and I are both competitive and we want to show up on May 17th will the largest, loudest, coolest Great Strides team! I want the local CF community to say, "who are theses Crosby Show people? There are so many of them!" Please sign up. And encourage all your friends and coworkers to sign up too. 

Great Strides is the Cystic Fibrosis Foundation's largest national fundraising event. By joining The Crosby Show team, you will help fuel lifesaving research and medical programs that make a difference for people living with this disease, people like Crosby. 

Joining Great Strides is a simple and effective way for you to show your support for Crosby and his battle against CF. We would love for you to make a donation, but you don't have to in order to sign up for the walk. Registration is free! 

Join us. 

Help add tomorrows for Crosby.

Walk for him.

Crosby @ 4 Months

Dear Crozzie Bear,

You are 4 months old!

You just keep growing and growing and I am so happy about that. You weigh close to 14 pounds and you're 23 inches long. You are now in size 2 diapers and wearing 3-6 month clothes.

Just last week you decided to roll over! Now, every time I put you on your stomach, in two seconds flat you flip over on your back. I must confess, it's a pretty fun game. You have started drooling and putting everything in your mouth. You can soak through a bib or outfit with a quickness. I hope you're not teething but we are wondering if you're getting a milk tooth?!?

You definitely now notice the world around you. Whether it's your play gym, the tv, or your sister dogs, you are so aware of everything that is going on. You love to be held and you love to kick. You are so vocal! You have found your voice and you like the sound of it. Your sweet little smile rocks our world and your laughs make every hard moment fade into the background.

We can't get enough of you.

Love,

-Momma and Daddy

It's basketball season. You decided to wear your hogs hat in the style of your Pappy and Great Papa! WPS!!!

Genetics of CF

Fair Warning: This is going to be a pretty science-y post.

I have explained what Cystic Fibrosis is but I haven't explained what causes it. Get ready for a crash course in genetics. I actually took a genetics course in undergrad. Hard stuff but so very interesting. Hopefully, my science-y side can paint a clear picture here.

But first, he's a little treat to get you through this technical post:

Feel better? I do! Let's commence...

Every person has genetic information which tells the body how to form and how to function. All of that information is held on structures called chromosomes. We have 23 pairs of chromosomes; one pair comes from our mother and the other pair comes from our father. Like this:

Chromosomes are numbered in pairs from 1 to 22  and the final pair are our sex chromosomes, X and Y, that determine if we are male or female.

Chromosomes are microscopic in size, but hold a huge amount of information. The information is grouped into specific sets of instructions, called genes. Genes are what determine our physical looks, like hair color, eye color, height, ect. The genes supply the body with instructions for making certain proteins, which are the building blocks of the body. These proteins affect the body’s health, growth and development. 

All of this genetic information is written in code and stored as a chemical called DNA. The DNA code is made up of letters that spell out the instructions in genes. CFTR is a gene on chromosome 7. 

We all have two CFTR genes. The CFTR gene provides instructions for making a protein called the cystic fibrosis transmembrane conductance regulator. Say what?! Long name, I know. This protein acts as a bridge across the outer surface of the cells that produce mucus, sweat, saliva, tears, and digestive enzymes.

The bridge transports negatively charged particles called chloride ions into and out of cells. The transport of chloride ions helps control the movement of water in tissues, which is necessary for the production of thin, freely flowing mucus. The CFTR protein also regulates the function of other channels, such as those that transport positively charged particles called sodium ions across cell membranes. These channels are necessary for the normal function of organs such as the lungs and pancreas.

There are small differences in all our CFTR genes. Theses differences may cause the CFTR protein to be different, but it is still working correctly, transporting chloride and sodium ions across the cell membranes. However, sometimes the difference in some CFTR genes may cause the protein to not be made or not work correctly. When the genetic difference causes a harmful change, it is called a mutation. Cystic Fibrosis is caused when a person inherits two CFTR mutations and lead to minimal or non-working CFTR proteins. Defective CFTR proteins means that cells that produce mucus, sweat, saliva, tears and digestive enzymes are affected and the "bridges" that move sodium and chloride ions in and out of cells aren't doing what they're suppose to do.

When Crosby was screened as a newborn (as all newborns in all 50 states born in hospitals are), they are looking for mutations in the baby's genetic code. This is called gene sequencing. Crosby's CFTR gene was sequenced and he was found to have two mutations in each gene. This means he has a change in each copy of his CFTR genes, one mutation on each chromosome. 

Cystic fibrosis is an autosomal recessive disease. That means a person must have a mutation in both copies of the CF gene to have CF. If someone has a normal CFTR gene and their other gene has a mutation, that person will not have CF but is a CF carrier. Both parents of a child with cystic fibrosis are CF carriers. Lance and I are both carriers. 

Each time two CF carriers have a child together, there is a 1 in 4 chance that both will pass along their CF mutation to their child. Because the child would get two CF gene mutations, the child would have CF. However, there is a 3 in 4 chance that each child will NOT have CF. Children of two carriers may be healthy CF carriers like their parents. It happens like this:

The most common CFTR gene mutation is known as ΔF508. 80 percent of CF patients have a ΔF508 gene mutation and about 40 percent have two ΔF508 gene mutations. There are 23 other common mutations and over 1800 genetic changes have been identified in the CFTR gene. So while a majority of CF patients have this common mutation, lots of CF patients have different combinations of mutations that result in CF. The type of mutation or combo of mutations does not have a direct effect of the severity of cystic fibrosis. This means that even though we know what specific CFTR gene mutations Crosby has, we do not know how sick or healthy he will be.

We have chosen not to disclose which CF-causing mutations Crosby has. I'm doing it for privacy reasons. Probably because I'm an attorney and I've read/am familiar with the Genetic Information Nondiscrimination Act of 2008. But also because I believe that Crosby's genes are personal to him and any information regarding those specific genes needs to be kept private unless he decides to share later on in life.

Crosby's genes will not write his story. Crosby will write his own story. I'm just lucky that I get to be a part of that.

Thanks for reading through this.

Love,

Carmen

2 Lines

Dear Crosby,

It was one year ago today that I discovered your existence. I got up to go to the bathroom in the morning and those 2 lines appeared. Those 2 lines were so exciting, so surreal. I woke your Daddy right up and we both couldn't stop smiling. Then you grew and grew.  I look back on pictures of myself pregnant and think, 

Wow, that was Crosby in there all along. 

That whole time that was you! I get emotional just thinking about it. 

I love you so much.  

It's cliche to say, but I cannot imagine my life without you. I feel so blessed when I look at you and think, 

That is my son! I have a son and I get to keep him forever. 

Some days we cuddle in the biscuit for hours (not often enough though) and we just stare at each other. I love the way you look at me and then look at you Daddy and then you get the biggest smile on your face as if to say, 

Hey guys, I know you, I love ya'll! 

It melts my heart. You melt my heart. I've said it before but sometimes it feels like my heart will explode over how much I love you. I love seeing things as you see them. I love having you with me everyday. (Bubbers... Momma's got tears in her eyes right now just writing this).

I've cried more than I normally do in the past three and half months. I cried when you were born. I cried  those first two weeks when you were so hungry and couldn't get full because we didn't know you had CF. I cried when you were diagnosed with CF. I cried when I had to go back to work. I cry when you seem not yourself. I cry when I think time is going by too fast. I cried the other week when I had to pack up all your little newborn outfits. I cry when I think that your tiny little hands are the same hands that will be strong, manly hands like your Daddy's someday. Mommas can cry pretty easily. Having little babies makes us really vulnerable. 

I love watching you change and grow. I  love watching you make new discoveries and marvel at the world. You just noticed your feet the other day and you could not stop looking at them. You stare and stare as if to say, 

Wow, look at these! They are my feet! 

You are so full of wonder. 

I love your little personality. I love the way you want to be with me all the time and you settle down immediately when I hold you in my arms. I love how joyful you can be and grin right back and your Daddy and I when we grin at you. I love your fiery little spirit and how you let us know when you're not happy. I know your cries are just your way of communicating and I respect that. I tell you when you're upset, 

It's okay, Crozzie. You're just having some feelings. It's okay to tell Momma about them.  

I was forever changed by those 2 lines that showed up a year ago. Changed for the better. Changed for good. Crosby, you were wanted, you are loved and you are adored. You have brought so much joy into our lives. We're so lucky to have you. I'm so lucky to have you. Way before you were born, your Pappy told me that having babies is the greatest gift and raising children is the meaning of life. I didn't know what he was talking about. But now I do. You've showed me my purpose, sweet boy. My life battle will be fighting for you. And I will fight until I breathe my last breath. I love you forever and ever and ever, Crosby. Thank you for being mine. 

To the Moon,

Momma

The first time we met.

Holiday Recap

We had a wonderful first Christmas with Crosby. I tried to appreciate every moment. After all, you only get one first!

Before I get started, I have to give a BIG shout out to my Lochridge Clan family. These people! Love them. Thanks for always being there for me. Through everything. Thanks for loving me. Through everything. Thanks for loving my family. Thanks for loving Crosby. And thanks for what you did to make his Christmas wish come true. Lance and I were truly humbled. From the bottom of my heart, thank you! Love you all. So glad I get to do life with each of you. Ya'll mean the world to me.

Love to Robert, Val, Kathleen, Sammy, Lyndli, Karen Jo, Kelly, and Joey. Not pictured but sending thanks to as well: Ricky T, Henry, Trenton, Brian, and Kim.

We had Christmas Eve at Lance's parents. 

Family picture. Crosby is wearing his Cousin Eddie hat. It was evening, so he was feeling very serious!

Sherrie serving dinner. The table was gorgeous.

Lance, Miss Martha and Crosby's Great Grandfather!

Aunt T and Croz! Tara was sweet and  held Crosby while the rest of us ate.

Pops, Daddy and Crosby. 3 generations of Smith men. How handsome are they?

Christmas morning was just us. Crosby was in a great mood. We listened to Christmas music, opened presents, and drank coffee. It was perfect.

Our Stockings were hung by the chimney with care.

Still a little sleepy while seeing what Santa brought.

Lance helped open Crosby's presents.

He got a mobile!

As you can see, he was absolutely thrilled.

Zoe and Lucy got in on the action too.

 Zoe doesn't need help opening her present.

Christmas Day we went to my Mom's to open presents and eat lunch. It was a little bittersweet. Someone was missing.

Marlee, Aunt Sissy, Lance and Crosby getting the presents ready.

Crosby was just hanging out, waiting for his next meal!

Marlee and Nanny are opening their presents.

I didn't get any pics of my Granny, Uncle Randy and Cousin Connor. But they were there too. So glad they were a part of Crosby's first Christmas. 

The rest of the week was spent eating, cuddling, playing, and resting. 

We caught up on naps.

We got to meet our friend Gray! How cute is she? It was fun to watch the babies stare at each other. Gray is 8 weeks older than Crosby. It was good to catch up with Jacob and Heidi too.

So cute!

Gray wanted to touch Crosby! Gimmee!

Aunt Natalie came to spend an evening with us while Lance played poker. We didn't get a picture of her though. But she brought Crozzie his very own Chuck Taylor's! Thanks, Nat. We love you!

New Years Eve was pretty low key. I think we were asleep by 9:30.

Happy New Year!!!

NYE Dinner with the Aclins. Our running buddies. They are pregnant with Crosby's bff due in June!

Wishing everyone a wonderful 2014!!!

Love, 

Carmen