Breastfeeding and Cystic Fibrosis

I can't claim to have a lot of experience on the topic of breastfeeding in relation to Cystic Fibrosis, but recently, a super mom out there, Kacie, gave a great interview that at least partly spoke on the subject. The complete interview is certainly worth the read and I highly encourage you guys to check out the full transcript by clicking here.

Wendy: Since you were exclusively breastfeeding Lucy, did the diagnosis affect this? What did your doctors recommend and what did you do?

Kacie: I had always known that I was going to exclusively breastfeed my children so the decision was made before Lucy was even born. When Lucy arrived, and because she had the blockages, I was not able to nurse her for 2 whole weeks. Imagine my frustration and heart ache to not be able to nurse my child when she cried for me! She never ingested a single thing until 2 weeks old, waiting for her insides to heal up. She was given fluids and nutrients through an IV while I pumped, pumped and pumped, and saved every last drop of milk I could get. I made the NICU nurses write in huge, red lettering, "MOTHER'S BREAST MILK ONLY!" in her file so she would never be given formula. The very first thing that went into Lucy's repaired intestines was exactly 5ml of my milk. She was not to be given more than 5-10ml at a time to insure that the surgery went well. After 2 days of "testing" her new tummy out, we were finally, at last, able to nurse. I will never forget the first time either! She latched on like she had done it before. We were off and running. The doctors were very pleased that I was so adamant about breastfeeding. The recommendations about switching to formula came later. Lucy was not gaining as much as she should have been gaining according to the AAP weight charts. When she dipped below 50th percentile, it was mentioned that we may have to supplement with formula for added calories. I told them that giving her formula would never happen in a million years! I went home that day and started nursing her around the clock like normal, but I added in feedings as well, even when she really didn't even have hunger cues. I became a human pacifier because I refused to put her on formula. Extra nursing worked. She gained enough weight to get above the 50th percentile so Lucy's nutritionist never mentioned formula to me again.


Wendy: How has breastfeeding proved to be a great help in relation to Lucy's diagnosis and her illness in general?

Kacie: I make jokes that my boob has been my best friend and still is! Lucy has been in and out of doctors offices her whole life. Her life is very chaotic and stressful because of CF. More stress than a child should have to go through: blood tests, needles, throat cultures, wearing a vest that shakes her chest and taking up to 9 different medications a day. By nursing Lucy on demand for the last 2 years, we have created a safe place for her to go where she knows everything will be okay. Nursing is her neutral place, a safe place, the quiet place among the storm. I am more in tune with her and her physical and emotional needs because of our nursing relationship. Nursing her for this long has helped her immune system. She is sick less often and when she does get sick it is very short-lived. If I ever get a cold or illness, she has never gotten it from me. She is receiving the antibodies from me that are needed in fighting the infection. I really cannot think of one negative thing to say about breastfeeding Lucy.

Read the full interview at Aruban Breastfeeding Mamas

So what do you guys think? Does/did breastfeeding create a "safe place" for your CF child? Would you recommend breastfeeding to the mothers that are out there reading this?

First Day Out of the Hospital...

...the LAST time I got out of the hospital. I found this video buried in my YouTube account and thought I would throw it up. I often hear other CFers say that, "I'm not going to let CF control me", when I ask them why they won't do their treatments. Funny thing is, that's the BEST way to get controlled by CF, stop or don't do your treatments. Want to really have control over your life? Invest 10% of it really taking care of your lungs and the other 90% will be all yours.

So what do you guys think? Does that make any sense?

Haiti, Rain and Community

What a great week so far!! There is SO MUCH to be thankful for that it's a little tough to narrow it down to just three things...

First, I'm so thankful that Mandi's best friend (and maid of honor) Lenore could be in town with us this week with her boyfriend Mo. They actually came here to Phoenix from Haiti where most of Mo's family lives. I'm very thankful that they were not in Haiti at the time of that devastating earth quake, but I would ask for your continued prayers for Mo's family and friends who lost someone or had their property badly damaged. It's been so nice hanging out with them as they are both very enjoyable people to be around.

I'm so thankful for the nice rain we had yesterday. Now, let me clarify, if we had rain all of the time, I wouldn't be thankful for it. But this is the desert, so it's a pretty rare occasion that we can actually get some rain. Tonight it was coming down that kitties and puppies! There were what seemed like sheets of rain pouring down from the sky. It's definitely nice to have a change from clear blue sunny skies once in a while...although I hope it goes back to being that way today!!

Finally, I'm so thankful for the overwhelming response to CysticLife.org! Many of you have joined us over there and for that I am so thankful. I never in my wildest dreams thought we would have nearly 500 members in just 3 days! The great part is, this is just the tip of the iceberg for where we plan on taking that site and this community. It's so nice to see others buying into our dream and it really validates the last 9 months of hard work :) If you haven't yet joined us, please go to CysticLife.org and sign up for a profile today. See you over there!

Started a New Running Plan!

**I've been getting a lot of questions lately about how I started running and if there was any particular plan that I followed. Well, here it is, and I must say, it REALLY works! Just stick with it and I promise that you'll see great results :)**

So I was back to some running today and I must say, it felt better than I thought it would :) I was fortunate enough to be following the blog of my cysta Sara today after she posted a good running routine which should get my butt back into shape. I'm prone to listen to her since she ran in a half marathon only 35 weeks after her lung transplant! Plus, she is an amazing and awesome person with a super cool husband to match, so why not take her advice right? I started it tonight, but I plan on being on the 2nd week by Monday. And in the effort of full disclosure I did cough up a little bit of blood tonight on the run, but it was very little and mostly streaked, so I'm not worried. I did two sets of 7% pretty close together today so my lungs may be a little irritated, who knows. As long as there's not an increase in blood over the next couple of days, I should be fine.

So anyway, here is the running plan that she posted (courtesy of fitsugar.com):

	Mon	Tues	Wed	Thurs	Friday	Sat. or Sun.
Week 1	Walk 6 min., run 1 min. Repeat 3 times (total 21 min.)		Repeat Monday's workout		Repeat Monday's workout
Week 2	Walk 5 min., run 2 min. Repeat 4 times (total 28 min.)		Repeat Monday's workout		Repeat Monday's workout
Week 3	Walk 3 min., run 4 min. Repeat 4 times (total 28 min.)		Repeat Monday's workout		Repeat Monday's workout	Repeat Monday's workout
Week 4	Walk 2 min., run 5 min. Repeat 4 times (total 28 min.)		Repeat Monday's workout		Repeat Monday's workout	Repeat Monday's workout
Week 5	Walk 2 min., run 8 min. Repeat 3 times (total 30 min.)		Repeat Monday's workout		Repeat Monday's workout	Repeat Monday's workout
Week 6	Walk 2 min., run 9 min. Repeat 3 times (total 33 min.)		Repeat Monday's workout		Repeat Monday's workout	Repeat Monday's workout
Week 7	Walk 1 min., run 11 min. Repeat 3 times (total 36 min.)		Repeat Monday's workout		Repeat Monday's workout	Repeat Monday's workout
Week 8	Walk 5 min., run 20 min., walk 5 min. (total 30 min.)		Walk 5 min., run 23 min., walk 5 min. (total 33 min.)		Walk 5 min., run 26 min., walk 5 min. (total 36 min.)	Walk 5 min., run 30 min., walk 5 min. (total 40 min.)

Once you're up to running 30 minutes straight, try to stick with this four times a week.

My Top Ten Most Frequented Websites

So I spend a lot of time on-line. Generally I will be working, but during my night treatment, I'm usually able to stop by some of my favorite sites to see what's going on in the real world! Here are my top ten most frequented site during the past six months:

1saleaday.com- I go to this site every night before I go to bed mostly just to check out the sweet deals on there. I have actually even broke down and bought a few things as well! I've gotten some Wii controllers for my little brother for free (just had to pay shipping) plus I got a Margarita machine for the Melin's that was 150 and I picked it up for 25. Check it out, you may just walk away for something.

Yahoo.com- For whatever reason, I've always like the way Yahoo presented there news, sports, finance, etc..I generally try to stop by at least once a day to check on the national/world news and the stock market.

Espn.com- I love me some sports. I generally read through as many box scores as I can during my last treatment (except for hockey) just so I can stay on top of team records and who's doing what.

WildAboutAZCats.com- I may love sports, but I love Wildcat sports even more! My beloved University of Arizona will always have my heart, especially the basketball team. Basketball isn't even my favorite sport (football is), but I've always felt emotionally invested in our Basket Cats. This site talks all things Arizona sports and is a great resource for what is happening with our teams.

Twitter.com- I'm not on my Twitter account as much as I used to be, but I still find it a very valuable resource for keeping up with what is going on in certain communities. I stay up with many in the CF and running communities through Twitter and I also tweet many of my blogs and CF news.

Facebook.com- I've met many of you through my Facebook page and I'm very thankful for this wonderful site. It's a great way to keep up with some in the CF community as well as flip through photos until your heart is content. There are also a bunch of good groups out there that serve the CF community that have pages on Facebook. One of my favorites is CysticLife's fan page :)

Movoto.com- I've been looking for a house lately and this site is simply one of the best for how much information it has on it. You can find out just about anything and everything about a house that peaks your interest and they generally have good pictures of the property as well.

TinyURL.com- I post a lot of links to interesting articles I find onto Facebook and Twitter. Since I usually don't want to take up a ton of space with a long URL, I'll shorten it with this free service. One thing I like about them is there is no account and no signing in necessary.

RunSickboyRun.com- Yeah, guilty. I spend a lot of time on this site. I probably should be spending more, but I have a little project going on right now that is taking quite a bit of my time, focus and energy. I really enjoy writing for this blog though and I really hope that it can serve as a source of education, inspiration and hope to many of you!

CysticLife.org- Believe it or not, this site has been taking up most of my time the last six months. We launched yesterday, so it feels real good to "release the site to the wolves" (that would be you guys)! If you haven't signed up for a profile yet, please do, over 300 people in the CF community did yesterday!!!

What are your favorite sites? Any that I just need to add to my daily list?

Who Wants to Dream With Us???

Today is the day that Ronnie and I have dreamed about for what feels like forever. We have dreamed big and it feels so incredible to see our dream coming true. I could not be happier or more excited than I am today, to see where else our dreams will lead us. What am I talking about you ask? Let me back up and give you the full story so you can join in on our dream.

As most of you know, Ronnie and I have worked together for the last 10 months. In April of last year, Ronnie was asked by an incredible couple, the Gettels, to create a web site for the CF community. The charge was undefined, but the possibilities lit a fire under Ronnie unlike anything I have ever seen. His love for the CF community and his desire to support and encourage them fueled his imagination. Our life became one huge brainstorming session. This dream became a reality with the formation of an organization called CysticLife. And we were well on our way after assembling a dream team that consisted of Ronnie, two brilliant web developers, and his beloved (this would be me, Jezzabel prefers unemployment) to write, design and spread the word.

To us, CysticLife (CL) has become a dream not only for an organization, but for a community. CysticLife isn't just a new organization; to us, it's a new movement. We want CysticLife to be a place where people can come when they're down to be picked up, and a place to share your accomplishments when you're riding high. It will be a place to gain knowledge from your peers who have lived it and get it. CL is about becoming comfortable with who you are and what CF means in your life. It is about transforming the CF community into being their own cure. We want to give people the skills to manage their CF and take care of themselves. We want people to go through life with a smile on their face, a can-do attitude and the confidence to take on whatever challenges might come their way.

We have taken our first steps to making our dreams come true. Today, we launched CysticLife.org, a social network (like facebook) made specifically for the CF community. On CysticLife.org people can post blogs, ask questions, maintain a profile, contact others, and search members by age, location and relation to CF. This is going to be an incredible resource, and the best thing is...this is only the beginning.

We are super excited about this site and would love for you to check it out, and hopefully share in our excitement. We truly love and value each of you and your opinions. You never hold back on RSR when it comes to sharing what you think, so we're hoping you do the same for CysticLife.org. We know if you think it's terrible, you'll tell us like it is, and that if you think it's great, you'll join in our on dream. We're really shooting for the latter ;-) !!!

Oh yeah...in my excitement I forgot to give you the link. Here you go: www.CysticLife.org

Welcome to Joshland!!

Are you looking for a new CF/Life related blog to follow? Then look no further than Welcome to Joshland! Josh has got to be one of the most involved and inspiring fibros out there and I thoroughly enjoy the friendship we have built the last handful of months. Recently, Josh has been working on his YouTube page to be a kid friendly CF show of sorts. He has only filmed the intro "episode" thus far, but I'm sure with a little bit of nudging from you (and your kids) he'll be eager to do more. Josh has a BIG heart for kids and it really shines through with his warm and inviting personality. I encourage all of you to check out the "pilot episode" below and stop by Welcome to Joshland after you leave here!

If you didn't think that was enough, check out the talented fibro Josh and a couple fellow cysters contribute to The Breathe Song Event. This song has been a real source of inspiration to many of us in the community and, in my opinion, one of the best CF related materials ever put out to mainstream. Enjoy!!