An Orphan Disease

Cystic Fibrosis is called an orphan disease because it affects such a small percentage of the population. If you recall from my post here, only about 1,000 people in the U.S. are newly diagnosed with CF every year.

"Rare disease" would probably be a better way to describe it but orphan disease is used because CF is a type of disease which has not been "adopted" by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it.

Basically, the big drug companies (or rather ALL of the drug companies) lack a sufficient profit motive to invest in the research and develop new drug therapies for CF. Because so few people have CF, nobody wants to spend the money on research for medicine because there are not enough patients who would then offset that expense by buying the drugs, when they became available. 

Without pharmaceutical companies invested, this also means that the U.S. Government doesn't fund research for a cure.

So where do we turn? 

Privately-funded research has created most of the medicines and treatments that have been able to extend the average life expectancy of the 30,000 Americans living with CF.  Private donations made to the Cystic Fibrosis Foundation have funded nearly every single CF drug available today.

This means that if there is any hope for future treatments and a possible cure, the  way it will be developed is from donations to the Cystic Fibrosis Foundation.

90 cents of EVERY DOLLAR that you donate to the CF Foundation goes directly towards drug development, research, and advocacy. That's huge!

I want a permanent fix for this fatal hereditary disease. Will you help me? Will you help Crosby? This little dude is waiting for a cure. He's waiting for the expiration date on his life to be lengthened.

You can help by signing up for the GREAT STRIDES walk benefiting the Cystic Fibrosis Foundation on May 17th. If you've already signup and/or donated, from the bottom of my heart, THANK YOU. Please encourage your own friends/family/coworkers to join us!

If you're reading this blog, I would love to see you there. Please join our team by clicking this link and registering. Registration is free.

Walk for Crosby.

Join us.

Join us so that someday CF stands for CURE FOUND.

Love,

Carmen

P.S. HUGE THANK YOU TO EVERYONE WHO PARTICIPATED IN THE COMPLIMENTARY MEAL LAST WEEK AT BJ'S RESTAURANT. BJ's is an ongoing sponsor of the CF Foundation. I thought that all donations last week went to the national CF organization but I found out that ALL of the money actually went to our local Arkansas chapter, which sponsors the very CF clinic Crosby goes to. So if you dined at BJ's last week and donated, whatever you gave directly benefited our little dude. How cool is that?? Lance and I went at lunch and I have to say our meal was fabulous. I also got to show our sweet waitress (who was in training) pictures of Crosby and we chatted about CF and how important the donations are to folks like us!

Crosby @ 6 Months

{*I want to say thanks to everyone who sent me texts, emails, and comments (IG follows too) about my guest post on Carol's blog yesterday. I really appreciate all the loving support that you guys show us. Your encouragement means so much.}

Dear Crozzie Bear:

You are half a year old!

We don't think that you can get any cuter.

You roll over, sit-up, and stand with support.

Everything, and I mean everything, goes straight into your mouth.

You are very vocal (love your throaty little baby voice) and you still love to be held and snuggled, especially by Momma. 

You are not a good sleeper. We are trying everything but you still wake up every 1.5 to 2 hours. Baby, please learn to sleep better! For you sake and our sake!

You have really packed on the chub the past couple of weeks. We call you "Tubby" and I am so thrilled you are thriving! {This is a HUGE deal for CF babies.}

We love you more by the minute and are hearts are so full.

You love hanging out with your Daddy, checking the Hogs message boards:

Crosby is chewing on a teething toy called Zo-li. So awesome! Thanks to Kandace for the rec.

Bath time!

Chewing on a frozen wash cloth (see what I mean by everything goes in the mouth!)

Blue Eyes!

Two of your favorite things to do: Hanging with Daddy (again!). And loving on Mom.

So now for a little fun and to get a little interaction with the Crosby Show Fans! Who do you think Crosby looks like? His Momma? His Daddy? Both? Please respond in the comments below {If you respond on Facebook, I can't see!}

 Love,

Carmen

Guest Posting on a Friend's Blog

So a few weeks ago, one of my oldest friends, Carol Spenst (née McCulley) asked if I would write a guest post on her blog found here.

Carol and I grew up together. We went to elementary school together and I was very close to her and her family, as her mother took care of me before and after school. I absolutely loved her family and the time I got to spend with them. Sadly, Carol moved to Kansas when we were in 7th grade. I was so sad to see my best friend go. We kept up with each other a little in high school (thank you AOL) and college. 

Funny story, I once went to cheer on my own UCA Bears at a soccer game at John Brown University, where Carol attended college. I didn't have her number, so I went over to the JB student section and asked if anyone knew Carol McCulley. A guy stood up and said he did and I told him I was an old friend and asked him to take me to her. I surprised her in her dorm room. We took this picture:

Carol ended up back in Central Arkansas after she and her husband, John, opened up a Chik-fil-A in Little Rock. So glad that she lives here again and that I still get to call her my friend.

Carol is an amazing writer and you will love her ADORABLE family. Carol is insightful, uplifting and encouraging. She is one of the sweetest gals I know. And I can attest to you that her sweetest is 100% real.

I won't self-deprecate out of fear of appearing disingenuous, but I was surprised she would want me to write something for her space but at the same time, I was truly honored. 

Sometimes I am a little scared to hit publish after drafting my own blog posts for fear of how what I have written will be perceived. I always try to be super honest, and let's face it, there is vulnerability in transparency. It's even scarier to do so when someone else will be hitting the post  button. Carol asked me to write about something I have mentioned on here before but never in detail - my faith. I was tested after Crosby was diagnosed with CF and it isn't a pretty story. But it's real. If you're interested, follow the link here.

Love,

Carmen

Complementary Meal

Hi Friends! Crosby here.

Want a free meal at new Little Rock restaurant before it opens?

BJ’s Restaurant and Brewhouse is opening in Little Rock at Shackleford Crossing.

Next week they are having a soft opening. My Momma wanted me to pass along a coupon that will entitle you to a complimentary dinner at BJ’s. 

ALL donations benefit the Cystic Fibrosis Foundation. The deal is that you need to make a reservation and bring the coupon.

It would mean so much to me if you would consider participating. This is a great way to try out a new restaurant and help out a good cause at the same time. Your donations will help fuel lifesaving research and medical programs for people living with Cystic Fibrosis, people like ME!!!!

For more information visit www.cff.org or http://www.bjsbrewhouse.com/foundation.

Here is the coupon. If you can't print from the blog, please email my Momma at sanderscarmen@hotmail.com and she will email you a copy of the coupon!

Thanks to everyone!!!

Love,

Crosby

I'm holding you close

Here we are.

I'm holding you close.

We have an unspoken agreement,

You and I.

I usually know what you want the moment you fuss.

And you know by my presence,

I’m about to make everything all better.

I give you comfort,

And you give me joy.

I babywear you.

And I hold you close.

You grab my shirt, pull my hair, and slobber on my face.

And I hold you close.

You're in my heart, in my mind, and in my arms.

I don't have this Momma thing completely down,

But that's okay.

I have no intentions of tricking you into believing I’m perfect.

I acknowledge my imperfections,

There are plenty.

But hopefully I am an example of a life lived honestly.

My love for you is perfect,

But I am not.

You melt my heart.

You make me so happy.

And it’s written all over my face.

My sweet, Crosby. I'm holding you close, 

And I always will.

I Love You to the Moon...

And Back.

Love,
Momma

Consuming Ones Placenta

That title got you didn't it?

Now you're thinking that I'm super crunchy or granola and you're also thinking I'm pretty gross. She ate her placenta! But, if you read this post in it's entity and see that it's not like I fried up it up in some butter and scarfed it down AND there are actual benefits to placenta consumption, maybe you'll be less grossed out or even better, a little more informed. 

This all started before I was even pregnant when I read a post by one of my favorite bloggers over at www.mamaandbabylove.com. Now, I don't want to go casting stones, but Stephanie is pretty granola. She did actually saute and eat her placenta. I imagine that it tasted something like liver. I'm not sure why, but that's what I imagined. Being the liver-hater that I am, that doesn't sound very appetizing. But the research and benefits that she pointed to made it seem like this was a very good thing to do. However, I was present when my BFF Natalie gave birth. I know what a placenta looks like. As I read Stephanie's article, I conjured up that image, and I thought,

I could never eat that.

While pregnant, I gave little thought to placenta consumption because of aforementioned gross analogy to liver.

Fast forward to my final days of pregnancy. A close girlfriend of mine, who had given birth just 6 weeks prior to me and who happened to use my same OB, offhandedly mentioned she had her placenta encapsulated and that it was the absolute best postpartum advice she could give me. 

What?! 

Placenta encapsulation? 

What is this? 

That is a real thing? 

Kandace explained that there is a company in town called BirthWorks and one of their doulas offers placenta encapsulation services. It's consuming your placenta in pill form. 

So before I signed up, I decided to do a little more research. As it turns out, humans are actually one of the only mammals that don’t regularly eat their own placentas. Some researchers believe it must be because the placenta offers some fundamental biological advantage. The placenta contains high levels of things like iron, vitamin B-12 and certain hormones. 

The thought is that the placenta may offer a new mother certain health benefits, like the treatment of postpartum depression. It has been suggested in the past that postpartum depression in some women is spurred by the quickly shifting levels of female hormones after giving birth, and that by eating the placenta, the hormones will stabilize and postpartum depression can therefore be prevented.

Another thought is that the placenta can offer some degree of pain relief due to certain chemicals contained within the tissue. In ancient Chinese medicine, placental extracts are commonly mixed with herbs taken to relieve pain, stimulate milk production, and even to cure impotence. Additional potential benefits of a placenta pill included the ability to improve breast milk supply, increase energy and even prevent aging. 

Now, I know if you google placentophaiga (the scientific word for the practice of eating one's own placenta) that you'll come up with a myriad of information from sites that promote the practice by saying you must eat it and if you don't you're depriving yourself of nature-intended beneficial nutrients, to stark criticism and  flat out opposition.

Lance was pretty skeptical. Especially since I threw this on him literally one day before my due date. Plus he thought it was weird. And gross. But he acquiesced on this and allowed me to make the decision. Which I decided to go for it as I lay in my hospital bed counting contractions. Talk about last minute.

I've read where some hospitals have specific guidelines on releasing a placenta to a mother. For me, I had no problem. I simply told my L&D nurse that I wanted my placenta and she put it in a medical plastic bowl with a lid and put it on ice in the sink until my placenta encapsulation specialist could come retrieve it.

Shortly after I had given birth to Crosby, the gal I had called hours before showed up. She took my placenta and dehydrated and encapsulated it. The next day, she brought my placenta pills to me up at the hospital. I took 2 pills, three times a day for the first week. Followed by 2 pills twice a day for the second and finally one pill twice daily for the third week. Because the placenta is dehydrated, there is no taste. No grossness. I swear.

Since I have nothing to compare it to (i.e. I've only given birth once) I don't know for sure if it had all these miraculous affects. I will say that while I was pretty teary the first week or so, the baby blues faded fairly quickly and once my milk came in, I had no trouble with supply! My friend Kandace has given birth twice, once without taking the pills and once with. She swears there was a huge difference in her emotional state and energy levels. I'm a believer.

And, let's face it. I'll do anything that helps my little dude or helps me take better care of him.

So, I shared all this, not to say, "you must do this, it's the only way." But to explain what I did and why I did it. Take what you want, and leave the rest :)

Love,

Carmen

Vitamins and Salt

This post is all about supplements prescribed for Crosby.

Starting the post out right with this cutie's pic.

In addition to all the enzymes we give Crosby daily, he also takes vitamins and salt.

Here is our monthly supply of all of Crosby's meds from our local, friendly pharmacist.

My bedside table. Two nights worth of empty enzymes caps. [Oh, and that book. Praying Circles Around Your Children. A sweet friend gave me that and I highly recommend it!]

First up: Vitamins.

Because patients with CF can suffer from pancreatic insufficiency (which Crosby does), they have trouble absorbing fat-soluble vitamins and nutrients. This is because if you're body is having trouble breaking down fat and the fats quickly pass through you, certain vitamins that are found it fats (as opposed to water), aren't absorbed either.

AquADEKs is a multivitamin and mineral supplement designed to help increase absorption of fat-soluble vitamins A,D,E,K and other micronutrients.

Interesting fact about AquADEK - it was developed especially for CF patients and was funded by therapeutic development grants for the Cystic Fibrosis Foundation. Proof positive that if you donate to the Foundation, your dollars go towards treatment developments!

AquaADEK is bright orange and smells very, well, it smells vitaminy. Maybe like liquid Flintstones without the sweet, fruity taste. The smell is SO strong. Surprisingly, Crosby takes the vitamins well. I wouldn't say he loves them, but he doesn't seem to mind them.

The awful thing about AquaDEK is the color. Any spit up or drool after a dose results in the ruining of an outfit. We have A LOT of stained clothes. As the smell indicates, the vitamins are pretty powerful and must be taken with a feeding, so that they don't upset his stomach. On a lot of CF forums, parents have reported that their children smell like the vitamins when they sweat. I haven't noticed that yet, but after he take the vitamins, his sweet little baby breath smells like them!

Now for the salt.

Yep, good old table salt. We give Crosby salt daily. Or, well, we're suppose to. CF causes the salt balance in the body to be out of whack. People with CF lose a lot of salt in their sweat and unlike you and I, it can't be reabsorbed. The more they sweat, the more salt they lose. Crosby's skin even tastes really salty. 

We've been told over and over that most CF patients, including babies, crave salt. Crosby's sweet nutritionist has told me stories of CF kiddos who open salt packs and pour them into their mouths. Well, not Crosby. We have struggled from day one to get this baby to take his salt. He is suppose to have 1/8 teaspoon daily. Doesn't sound like much, does it? Tell that to this guy:

Crosby hates salt. We've tried every which way to administer the salt.

I've divided up the dose and sprinkled it into his bottles, he refuses the bottle and then I've wasted all that breastmilk.

We've tried dissolving it in water and using a dropper to put it in his mouth and then washed it down with breastmilk. No dice!

I've tried dilluting it in apple juice. Eck says my Little Dude.

Lance once just wiped in on his tongue. Worst. Idea. Ever.

I've put it in baby apple sauce. Nope. And because he must take his enzymes in apple sauce, I was a little nervous he would start hating apple sauce so I gave that up pretty fast.

I've even sprinkled it on my boob in hopes that he would just lick it off during nursing. Hates it.

Most recently, I've sprinkled a little bit on baby pears. That is going okay.

No matter what, he's got to take it. I'm super nervous because at 6 months old, and especially going into the summer months, we have to increase the dosage to 1/4 teaspoon daily! What's a Momma and her salt-hating boy to do? This guy is not his Daddy's son when it comes to salt. Lance salts food without tasting it! If you have suggestions on how I can give Crosby salt, I would love for you to leave them in the comments section below.

Oh, and it was a good week for the Hogs. My Dad would be happy. Lance is very pleased. Go Hogs Go from the cutest little Razorback:

Love,

Carmen