Thursday, December 23, 2010

Thankful Thursday.....

The people over at RSBR have been urging people to write 'Thankful Thursday' posts, which is a pretty cool tradition. So, I'm jumping on the optimism bandwagon and following suit. Plus, this is just that time of year when it's necessary to take a few moments out of your busy, hectic schedule to really think about everything we are blessed with. So many of us get so stressed out and crabby during the holidays (just ask any of the checkout clerks at your local Target, they've got GOBS of stories) that we tend to forget what this season is all, here goes;

I am thankful for the release this blog has given me.
I am thankful that there are people who actually read it and are learning about CF.
I am thankful there are people who are organ donors. (Hint, hint. There's an icon over on the side of this'll take you 2 minutes MAX!)
I am thankful that there are self-diagnosed 'non-profit junkies' in this world.
I am thankful that 2 of them run the entire Iowa chapter of the CF Foundation.
I am thankful that my daughter calls everyone honey.
I am thankful that my son knows what a 'random act of kindness' is.
I am beyond thankful for the men and women who have dedicated their lives to researching and developing drugs that will eventually lead to my daughter's cure.
I am thankful that I have a husband who 'gets me' (most of the time, anyway).
I am thankful to be an aunt AND a great aunt.
I am thankful to have a baby goddaughter.....she is absolutely breathtaking.

And, finally, I am thankful for all of my friends and family for everything you've done for us throughout this past year. I am thankful for every penny you donated or raised. I am thankful for every supportive word spoken. I am thankful for all of your prayers. I am thankful for every single one of the emails and Facebook messages I've received with words of encouragement. I'm thankful for the shared tears and the shared smiles. I am blessed beyond belief.....

As we gear up for the New Year and another year of fundraising, I want to share a video we made for Rylan. Please feel free to share it with anyone you'd like who may want to help our efforts. 2011, I have a good feeling about you.....

Wednesday, December 15, 2010

My Not-So-Little, Little Boy.....

I am amazed that THIS is how my now 5 year old, 56.4 POUND 'little' boy, 1st came into this world. He came 8 weeks early and weighed a whopping 4.1 lbs....he was 18.5 inches long and looked like such a wrinkley old man :) But his Daddy and I thought he was the most beautiful, sweet, angellic little being we had ever laid eyes on. He was immediately whisked away to the NICU and stayed there for 46 days. I came home to shower every few days, but beyond those few hours at home, I never left his side. Daddy had to eventually go back to work, but his mind was never 'fully' there. He would bring his laptop to the hospital and work from there as much as he possibly could. The two of us slept on a little cot that was made for someone more like Chewy on Chelsea Lately.....but we were petrified to leave him.

I remember the day we finally brought him home and how quiet the house seemed. We were so used to the hub bub of the NICU and all the heart monitors and O2 machines beeping, when it was finally just the 3 of us (plus the 4 legged furry older brother) it just all seemed so surreal. Barry and I took turns watching him sleep in the bassinet just to be sure he was still breathing.....

Fast forward to today.....I had to take Kohen to the pediatrician the other day (it felt so strange to make the appointment for HIM, instead of his sister!) and when he jumped up on the scale and I saw the 56.4 lbs come across the screen I about lost it. HOW DID THAT HAPPEN???? When did he get to be so big??? He was literally just 46 lbs, I am SURE of it. Wasn't that just last month?? No, maybe it was at the beginning of summer??? I can't remember. But all I know is he is now a boy. He is 5. Granted he has been for awhile, but it just hit me like a ton of bricks. I looked at his hands and almost cried. He doesn't let me hold them anymore of course, so I hadn't noticed how big they really are.....

I wish I could remember the last day I bounced him to sleep in his nursery while he laid across my stomach looking up at me. I wish I would have realized it would be the last time. I wish I remembered the last time I heard him call 'MAMA, AARRRREEEEE YOUUUUU?' from his room in the morning waiting for me to come in and get him up. I wish I would have realized in that moment that I needed to really listen to his little voice and cherish it because it would be the last time he would say it in just that way.

You know what started this sappy post? Finally packing away the summer clothes that don't fit him anymore. And of course, since I was getting all sentimental, (and being the girl I am) I decided to get even more emotional and pull out his box of baby pictures.....

Thursday, December 9, 2010

Potty Training Tool!!!

Updates GALORE!!! 1st and foremost, clinic called last week and we got yet ANOTHER culture back that was negative for pseudomonas!! Thank you, God, for this 'little' reprieve. I know how quickly those nasty bugs can sweep in, so I'm just thankful for each and every day that is (for the most part) cough-free.....

This last week has been a VERY eventful one in the Mack house! We are officially pacifier-free AND little Miss Rylan is wearing big girl undies! (Maybe instead of saying it's been an EVENTFUL week, I should say it's been a week full of mishaps, messes, and tantrums??!) I will spare you the adorable pictures of little naked buns running away from the camera and down the hallway, and leave you with this picture instead.....

These cute little monster slippers have been THE BEST tool in getting her potty trained!!! She is one of those sweet little beings that could care less if her pants get soaked, if the barstools get soaked, if the carpet underneath Daddy's office desk gets soaked, if her brother's lego airplane that was placed a little too close to her gets soaked, etc.....BUT, she REFUSES to have her new little monsters slippers get soaked. And what would be the 1st things to pool up if she doesn't make it to the bathroom in time? Yep, you get the, if any of you are knee deep in potty training (and carpet cleaner), I URGE YOU to add new slippers to your child's wish list!!! You won't regret it! And if for whatever reason they don't work for potty training your child, you'll still end up with some REALLY cute pictures that will haunt your child for the rest of their life!!!

Tuesday, November 30, 2010

Dear Santa.....

A few nights ago, Kohen and I were snuggling in bed reading books. Ok. So we weren't reading books.....we were reading the Target toy catalogue. I told you, the kids never put the thing DOWN! But anyway. We were snuggling and chatting when all of a sudden he asked why Daddy has to go to work everyday. I answered that Daddy goes to the office everyday so Mommy can stay home and take care of he and his sister. I said that Mommy DIDN'T have to work because Daddy worked enough for the both of us. As soon as I said it, I knew that wasn't the 'right way' to put it. After all, as mothers we hold numerous job titles. We are chauffeurs, nutritionists, waitresses, referees, cooks, repairmen, secretaries, janitors, nurses, psychologists, teachers, attorneys, you get the point. But, I tried to keep the answer short and sweet. I simply said, Daddy works so Mommy doesn't have to. He looked up at me and point blank said, "But Mommy! You DO work!" I thought, YES! He sees all the above mentionned things I do and is FINALLY going to give me some credit! When he simply said "Sick-sick fibrosis. THAT'S your job!!" (Which, how fitting, is what he calls cystic fibrosis). Punched in the gut doesn't even BEGIN to explain how I felt at that moment. He always sees things so unbelievably clear. Out of the mouths of babes, right? And you know what? I couldn't ask for a more meaningful job. I will continue working for/with/against 'sick-sick fibrosis' until it is no more. Until all the men and women who are researching every day for our cure have finally struck GOLD. My baby DESERVES that gold. So, Santa, my list for you is pretty short this year. PLEASE CURE CF.

Monday, November 29, 2010

Tank You!!!

Rylan's been off the TOBI for 7 days now, so this morning we took her down to our pediatrician's office to get another throat culture done. We should get the results back before the end of the week, fingers and toes crossed that this is another negative! We also started using a nasal mist periodically throughout the day to help with dryness, and it seems to really be helping her. I've noticed the dark circles under her eyes have gotten a lot better.....

She is such a trooper.....she was also due to get a vaccination this morning. Normally, under NO circumstances, will she EVER get up on the bed at the doctor's office. She knows the second she gets laid down on it, someone is either sticking a huge swab down the back of her throat or a needle is getting plunged into her leg. So, we've learned how to maneuver her on my lap for all of it. But, for some reason, today was different. When the nurse came in at the end of the appointment with that needle in his hand, she actually let me put her up on the table! She didn't take her eyes off of him the entire time, BUT she let me lay her down. Wow. So, I held her little hands and on the count of three, both Kohen and I turned our heads, shut our eyes and waited for the wails. And, there they were. LOUD and clear. BUT, the difference today was they lasted a whopping 6 seconds. AND, through her tears, as she's rubbing her bare little leg, she kept sobbing "Tank you....tank you....tank you" to the nurse. Unbelievable. That poor nurse didn't know how to respond. He looked at me with tears in his eyes and said in all the years he's been in the medical field NEVER has anyone EVER said thank you after getting a shot. That little girl NEVER ceases to amaze me.....

We got the tree up over the weekend, and read our book "The Elf on the Shelve".....Santa's little scout elf has been working WONDERS in our house! Sibling rivalry is down by about 90 percent and whininess is down by about 30 percent (with a 2 year old diva in the house, ANY decrease in whininess is welcome!!). The kids can't wait to ransack the house every morning looking for the new spot the elf is hiding in! Here is a behind the scenes video of the elves at training camp (this video has become the new household favorite).....enjoy!

Tuesday, November 23, 2010

Out Run CF!!!

A few posts back, I talked about my new love of running.....I definitely am NOWHERE NEAR being able to run a marathon or even a HALF marathon for that matter. I ran a 10k (6.2 miles) back in May for our annual CF Great Strides walk/run and honestly could barely walk for 3 days. NO JOKE. But I am ready and WILLING to give this long distance thing another shot...especially if it means BEATING CYSTIC FIBROSIS INTO THE PAVEMENT.

On March 20, 2011 there is an Out Run CF virtual race being held by Rock CF and CysticLife, 2 AMAZING organizations that are doing SO much for the CF community. The best thing about this race is that ANYone, ANYwhere can join! You can run or WALK any distance, whether it's a block or a full marathon, ANYwhere you'd like, while thousands of other people across the world are doing the SAME THING. We all lace up our shoes and put on our Out Run CF shirts (you receive one when you register) on the same day, at the same time, and raise awareness TOGETHER. How unbelievably cool is that?!

You are welcome to map out your own route, OR (AHEM!) JOIN ME! Some friends and I are mapping out a fun route and we'd love to have you along. I would love nothing more than to have a gazillion pictures of a GAZILLION people racing around little 'ol Des Moines, IA to plaster all over my blog and the CysticLife site.

So, again, here are all the specifics...

What: An Out Run CF Virtual Race held by Rock CF and CysticLife
When: March 20, 2011
Why: Because anyone can run – whether it’s for a minute or a marathon! Together, we can Out Run CF.

How: Register here

And, lastly, here is a REALLY cool site to get you basically just set up an account and then track your training progress AND keep track of others! (Be sure to join the Rock CF/CysticLife group, so you can hold me accountable and make sure I'm not slacking off!) I am committing to a half marathon, which is 13.1 miles. Whoa. I just put it in writing. I think I just threw up a little. Not going to promise to run the whole thing, but I WILL complete it (somehow!)...does anyone have a golf cart I can use??????? So, who's going to be my wingman??!

Monday, November 22, 2010

Welcome to the KMA's!!!

In honor of last night's AMA's (American Music Awards), I am hosting my own awards show called the KMA's. The Kiss My You-Know-What Awards. Guess who the big Winner of the Year is? Yep. You guessed it. Mr. Pseudomonas Aeruginosa.

But guess what? During Mr.PA's acceptance speech, Rylan pulled a Kanye . She embarassed the heck out of Mr.PA by grabbing that mic right out of his hand and declaring HERSELF as the big winner. HA! Take THAT CF. See that empty box? Round 2 of TOBI DONE! Another 28 days of nastiness DONE. 28 days of multiple hour long treatments DONE. Next year you may want to think twice about even showing up at the KMA's, CF. You're not welcome here. Thank you all very much for coming!

Tuesday, November 16, 2010

1st Infant PFT a SUCCESS!!!

So, let me start off by saying.....THIS WEEKEND WAS AMAZING!!!! WOW WOW WOW. Friday, the gals and I drove up to Minneapolis early to sqeeze in some IKEA time before the weekend's festivities. That evening we had the INCREDIBLE pleasure of meeting Josh and Carly Mogren of Welcome to Joshland fame :) IF you are not familiar with Welcome to Joshland, I INSIST you check out his site. Besides being honest, optimistic and just an all-around cool guy, Josh has a fabulous YouTube site that is dedicated to teaching kids (and people of all ages) about cystic fibrosis. Using humor and a crazy puppet named Moganko, Josh teaches kids the ins and outs of CF and, more importantly, how to have a great sense of humor and HAVE FUN with life. Big hugs to you, Josh and Carly! Thanks for the laughs!

Meet Moganko!! And just a little FYI.....Willow Smith has NOTHING on Moganko! That little puppet REALLY knows how to whip his hair.

Life is good. Really, really good.

So, onto Part 2 of the weekend. Remember that part I was SOOOOO nervous about? PIECE. OF. CAKE. Everyone's mood going into the infant PFT couldn't have been better, the procedure itself couldn't have gone better, AND the results couldn't have been better. We could have all used a little more sleep, but if sleep deprivation was the worst thing to come out of the weekend, well hey. NO SWEAT.

Our special 'night before procedure' dinner celebration. Someone was a little excited about being the center of attention.....

After a quick call to Nana's house to say good night to Bubby, we were all ready to call it a night.....

We were up by 6am doing treatments and all checked in to the hospital by 8am. Daddy and I were fully prepared for a miserable morning, seeing as though the little monkey was operating on only 6 hours of sleep. BUT, she was amazing, bless her little heart. She knew. She knew Mommy and Daddy needed her to be strong and she pulled through, of course. Here's a basic breakdown of the procedure.....1st came the drugs. 3 syringes of some pretty nasty tasting medicine later, Rylan was really (REALLY) sleepy. After she was conked out, they put a little vest on her and whisked her away to the procedure room. There she was placed in a small Plexiglas bed with a mask suctioned over her mouth and nose. This mask was connected to a computer, which is what would measure her airflow. Her lungs were inflated with air through the mask and then the vest she was wearing would inflate very quickly (think of a big bear hug), forcing her to expel all of the air out of her lungs. And, VOILA, the computer was able to measure how fast air flowed in and out of her lungs.....The whole process turned out to be a lot less 'involved' than what I expected. The measures they use to gauge her lung function are:

  1. FVC (Forced Vital Capacity, which is the total amount of air that can forcibly be blown out after full inspiration)
  2. FEV 0.5 (Forced Expiratory Volume in a Half Second, which is the amount of air that can forcibly be blown out in the 1st half second)
  3. FEV 0.5/FVC (the ratio between FEV 0.5 and FVC, which is what shows the AMOUNT of the FVC that can be expelled in a half second)
  4. And lastly, the size/volume of her lungs.

Numbers 3 and 4 are the most important....Rylan's numbers (when compared to other kids her age WITHOUT cystic fibrosis) were 100% and 120%, respectively. HIP HIP HOORAY!! What a HUGE relief. I am so proud of that little girl, it's not even funny. Her BMI has shot up, as well. We are nearing the 40th percentile, with the goal still being 50th. I've already prepped her for an upcoming turkey induced coma. Tee hee. BRING IT ON!!!!

Wednesday, November 10, 2010

Wish List.....

Honestly, where does the time go?! October has come and gone, and here we are already planning our Thanksgiving dinner.....ugh. And of course, the kids are already circling EVERY toy in EVERY catalogue/ad that comes in the mail. I've gotten pretty good at ignoring the 'I want THAT!' I hear in response to every random toy commercial on TV. It's gotten so bad that Rylan (always mimmicking her big brother) the other day shouted 'HEY! I want that!' at the TV during a DOWNY commercial. Huh??? Not sure if it was the soft sheets she wanted or the happy smiley mommy, seeing as though I had just found a spilled sippy cup behind the rocking chair with some sort of purple liquid oozing all over the carpet. AHHH, the joys.....

To add to the chaos of watching 3 kids every day, trying to keep the house SEMI clean (since the realtor may call at absolutely ANY second, usually with about a 10 minute warning before a family wants to come through the house), busing kids to and from school and doctor appointments, we have decided to take in another little munchkin during the day. This definitely wasn't planned, but I couldn't be happier about the decision. She is a little spitfire and adds a whole new energy to the house. There is a very sweet story behind it (and one that is CF related), but for now I'm going to treasure it myself and know that God has orchestrated a pretty amazing little twist to my life.....

This weekend brings some mixed emotions for me. It's a weekend packed full of CF, some I'm looking forward to and some, well, not so much. I'm SO looking forward to Friday and Saturday. Some fellow CF mama's and I (if you remember, they are one of the few reasons I'm thankful for CF) are road tripping up to Minnesota for their annual CF Education Conference. So, so, so anxious to hear all of the research updates and to just have a couple of days with the girls. Being around other people that 'get it' helps. Really helps.

And then there's Monday. The Morning of the Infant PFT. Our 1st PFT. Truthfully, I haven't even allowed myself to think about it much. I don't want to overshadow the first part of the weekend. I don't want the optimism to be drowned out by the sickness I feel in my stomach. Maybe it's because I have no idea what to expect. Maybe it's because I don't WANT to know what's going on inside her lungs. Out of sight, out of mind, right? She LOOKS fine. She SOUNDS fine. The doctor that we saw yesterday for our pre-op exam said so herself! We'd never met this doctor before, and she kept saying you would never know there's anything 'wrong' with her! Really?? I know that it was meant as a compliment. It's something I've heard numerous times before. Shoot, I'VE said it numerous times before. But honestly, it doesn't help. There IS nothing wrong with my daughter. ESPECIALLY when my daughter is in ear shot of that word. She will not grow up thinking there is ANYthing 'wrong' with her, or that she is sick, or that she is different. She will grow up as Rylan. Sweet, saucy, silly Rylan. And maybe THAT will be what makes her different. But that'll be HER choice.

And, as if ON comes Ry with her toy catalogue in hand asking for a pen. Too stinking never ends.

Thursday, November 4, 2010

Dear Diary

So, I've always been an athletic person. I played basketball all throughout school (although my husband to this day still doesn't buy it!), ran track and was also a cheerleader (THAT one he believes, but only because I annoy him by still singing the cheers on a regular basis and 'claim' to still know the dance to our highschool's fight song). By saying I was athletic, that definitely does not mean I was a GOOD athlete. I just liked being active. I still like being active, we belong to a gym that I LOVE and I've recently taken up running. Not really sure where this post is going, so stay with me please.....recently during these runs, I've found myself doing a lot of soul searching and I have come to a few conclusions. First off, I love running. I was always a short distance runner growing up, but now I love pushing myself to see how far I can go. When my lungs start to burn, I obviously start to think about Rylan. Maybe this is my way of getting closer to her? By having my lungs hurt and burn, I can relate to CF sufferers on some SMALL level? I don't know. But it definitely makes me think. I think about all of the people in this world that are affected by CF. I wonder if Rylan feels any pain? Do her lungs feel good? Do they hurt? My mind seriously just takes off. I wonder if she'll ever be able to run long distances. I wonder if there will be a cure by the time she's my age. Then I think about my age. 33. Median life expectancy for CF? 37. Have I lived a full enough life? Will I have by the time I am 37? Hell no. And, yes, I know that that age is 'just a number'. But there is no way that anyone could not let THAT number bother them when it comes to their kids. Then the tears come. The ugly ones. (Thank goodness I like running by myself, because no one would want to be a couple miles into a run and have to start consoling the crazy woman next to them). So, onto the second thing I have found out about myself. I like to cry. I've always been an emotional person, (honestly, my husband would probably tell you I'm borderline Bi-Polar at times), but I've never really been a person that cries a lot. Lately, I have really allowed myself to BE sad sometimes and to REALLY cry it out. And the best thing about a good cry? The feeling directly afterwards. You just feel so 'aaahhhhhhh'. I know that probably doesn't make sense, but that's the best way I can describe it. You feel so light, like that big ugly weight has been lifted and you can finally see clearly again. That good cry always gets me back into the right mindset. Life may not be fair, but it sure is good. And some even further soul searching has led me to a pretty major conclusion. I have been running FROM a lot of people for a long time. This post is getting heavy, I know, but for me today is more of a 'Dear Diary' kind of day. I feel like I have a lot of strained friendships these days. There are a lot of college friends that I don't talk to at all (other than the usual Facebook stuff) that I thought I would always be close with. There are a lot of childhood friends that I barely talk to anymore, that again, I thought I would always be close with. I know as you get older these things tend to happen. Your friendships become more about quality and not quantity. But what happens when ALL of these people that I'm thinking about were QUALITY friends? And there were a LOT of them? What then? And I know that it's been ME that has pulled away. I am the one that allowed the friendship to fade? Yes, it takes 'two to tango', but during these runs when I think back, I know. It's me. I'm the runner. What bothers me is I can't figure out why. I can't really pinpoint the exact moment in my life where this started to happen. Maybe it started around the time my dad passed away and it's some sort of 'coping mechanism'? Or maybe I've been too self absorbed and haven't thought a lot outside my little box. I don't know. But I do know that since Rylan's diagnosis it's gotten worse. I really have become 'disconnected'. I do, most definitely, have some very close, very dear friends that I talk to on a regular basis. But there are many others that I don't. And I hate it. I remember a fellow CF mom telling me that it took her about 2 years after diagnosis to 'get out of her funk'. Maybe it was Rylan's second birthday that did it, or maybe it's these runs. All I know is I'm ready to be out of this funk and back to simply being ME. The me with some really kick ass friends.

Sunday, October 31, 2010


I love them. I absolutely LOVE them. One of my absolute favorites is Halloween. Every year, we spend Beggars Night (which I'm just learning this year isn't something celebrated EVERYwhere??? What's wrong with you people?! We kid, we kid...) with some dear, dear friends of ours. Our kids are all close to the same age, and we all LOVE a good glass of wine.....what more is there to say?! So given the fact that Beggars Night fell on a Saturday night this year, well.....the rest is history. Happy Halloween!

Beggars Night Eve (is there such a thing??) Coolest. Sunset. Ever.

Pumpkin carving time!!! And no, we DON'T get those pumpkin carving kits. Get out those Sharpie's and knives kids! We do it 'old school style'.....

This picture still cracks me up.....this is the 'scary face' that Kohen wanted to carve in his pumpkin.

Little Miss Olivia the Pig and her sidekick, Iron Man. It took me until the end of the night to figure out why a 2 yr old would leave a pig nose on their face ALL NIGHT LONG! She's used to Bubbles, the nebulizer mask!!!

Aaaannnnnddddd.....they're OFF!!!


We hope everyone had a weekend filled with sugar induced craziness, great jokes, and most importantly, GREAT friends!

Monday, October 25, 2010

Short and Sweet.....

Happy Monday everyone! Just wanted to post a quick update.....we got a call from the University of Minnesota clinic last week and they have scheduled Rylan for an infant PFT on November 15th. PFT's (pulmonary function test) basically show how well a person's lungs are working. The problem is most kids can't properly 'do' them until they are 5 or 6 years old. Click here to see a great video from a fellow CF'er that helps to explain need to have excellent control over your breathing in order to get an accurate reading. So, unfortunately, that means you can't get a baseline for their lung function until they are older. Some clinics (like the U of Minn) do what they call an infant PFT, where they actually sedate the child and do some sort of process to test their lungs. Unfortunately, I don't know much more about it other than they give them drugs to make them really drowsy, put them in a box, and somehow 'capture their tidal breathing parameters'. Yeah, you lost me there too. Ugh. Sounds wonderful, right? You can count on me being a total wreck that morning. But, I am happy we are doing it. Apparently they are only able to do these infant PFT's until they reach a certain height and weight, so that's one good thing about Rylan being on the little side. Lately, we just have to try to find the positives in anything and everything we can! With the way she has been growing lately, I'm sure (and actually hopeful) this is the last one of these we will be able to do.....

Also, tomorrow marks Day 1 of our next round of TOBI. She will be on it for 28 days again and then we will reculture for the pseudomonas. Fingers crossed that this will be her second negative! If that is the case, then we will do one more round of 28 days on, 28 days off for negative culture number 3.....and then (everyone say it with me!) RYLAN WILL NEVER HAVE PSEUDOMONAS AGAIN!!!! Hey, we can always hope right?

Wednesday, October 20, 2010

A Love-Hate Relationship....

Last night I was reminded of how deeply I both DESPISE and appreciate cystic fibrosis. I'm sure to most people that sounds completely insane, but I AM thankful for what CF has given my family. It's hard to put into pictures may do better justice.

Why I hate CF.....medication after medication, but they only treat the SYMPTOMS. They don't fix the problem.

Why I hate CF.....I can't look at newborn pictures of Rylan without crying. Those 1st two weeks of her life we thought she was 100 percent healthy. We had no idea what life had in store for our little family of 4.

Why I hate CF.....having to explain to a then 3-yr old why his tiny baby sister has to have all of these tests done.

Why I hate CF.....having to take antibiotics that haven't even been approved for children under 6 yrs old....when you're 5 months old.

Why I hate CF.....your sense of 'normal' is something most people will never have to experience for even one day of their life.

And the list goes on and on....but what I'm finding is, as time marches on, that 'other' list is growing even longer. And one day, THAT list, the list of reasons why I'm THANKFUL for CF will be the longer of the two.

CF has given Kohen a chance to be a REAL superhero

CF has made our hugs a little tighter.....

.....and our kisses a little sweeter.

CF is teaching my kids companionship.....

.....and compassion.

It has given me a 'CF family'.....

.....who understand the importance of a superhero cape.

In the words of a great CF mom, "So many people's trials and struggles in this world are over the pettiest of circumstances, they can't see huge blessings when they're staring them right in the eyes......we warrior moms can. cus we know breathing isn't always a priviledge, sometimes its a right, that we have to fight hard for." She is so incredibly right. There are so many reasons to be pissed off at life...but then I look at that little girl. How can I waste ONE single moment on pettiness?? How can I get angry or upset at ANYthing when God placed that little angel in MY arms? Everything about that little girl is a blessing. Every. Singe. Little. Thing. And that includes CF.

Tuesday, October 19, 2010

It's Pumpkin Time!!!

Sunday may have been one of the best days EVER. We traveled to Patch's Pumpkins in Adel and it was SO worth the drive. The kids had a blast, the weather was perfect, AND they had a petting zoo. Seriously, could it get any better?

I don't know what cracks me up more about this picture, the fact that my kids are too cool for school or the miniature donkey in the background!

Really??! I SO could have taken this little guy home with us. SO adorable!

She's never worn sunglasses a day in her life, but she chooses today to wear these horrendous blue Spiderman glasses that were so scratched & finger-printed I'm surprised she could see 2-inches in front of her face.....

Pony ride?? Yes, please! Meet Rylan's new bestfriend. This little old man was so sweet and gentle & Rylan was a natural! Just look at that pose!

Rylan's horse of choice? Thunder. Kohen's horse of choice? Sugar :)

How do you finish off a perfect day? With a big 'ol bowl of soupy ice cream! (and who needs a spoon anyway??!)

Yep, they're dirty all right.

A perfect end to a perfect day....(this was about 2 minutes before the total sugar buzz sent the 2 kids screaming in circles around the table for 20 minutes!)

Tuesday, October 12, 2010

1 Down, 2 to GO!!!!

Yippy!!! It's official, Rylan's 1st culture from this last bout with pseudomonas came back NEGATIVE!!!! WOO HOO!!! So, now we will start the 28 days on, 28 days off of TOBI (inhaled antibiotic) on the 26th of this month. We will take additional cultures on the off months until we can get 3 negative cultures in a row. Your prayers would be greatly appreciated that we kick this bug in the butt SOON!! FOR GOOD!! Her labs came back normal as well. Her lung x-rays showed some 'streakiness' (mucus build-up), but there was no significant increase from this past January. So, for now we continue doing what we are doing...working hard to keep her lungs healthy and strong.

One question I get asked a lot is, will Rylan ever NOT have to do her vest or take other words, will she ever get 'better'. There are so many ways to answer that question. For me, many times it leaves me dumbfounded. Because many times it comes from people that I think should know the answer...I guess in a 'perfect world' everyone would know as much as I do about CF. Everyone would take time to read at least a LITTLE bit about it, seeing as though someone I love so deeply has to battle it EVERY day. But I also realize that until someone is personally affected by something, more often times than not, they don't. It's not that they don't care or purposely say or do things to hurt our feelings, but everyone has their own battles and things that are of importance to them. And I definitely DON'T want people to NOT ask questions. I WANT to educate, I WANT to make people understand. I WANT people to know Rylan, and by saying that, I mean to REALLY know her. So, to answer that question in textbook Rylan is not going to 'get better'. Cystic Fibrosis is a progressive disease. All of the time/treatments/medications we do is to delay its ugly progression. But to answer that question from a mother's perspective, from MY perspective, HELL YES. With the science and technology that is available today, of course we will find the 'magic pill'. I just need to make sure it's within Rylan's lifetime. So if you HAVE questions about CF, ask me. By becoming educated, you become an advocate. And by becoming an advocate, you help her and the other 29,999 people in the US battling this disease. So, please know your comments and questions are welcome and are actually greatly appreciated!! xoxo

Monday, October 11, 2010

Go Big Red!! husband is a DIE HARD Nebraska fan. When he and I were first dating, I did what any girl would do to win a sports guy's heart. I lied. I gushed on and on about how much I LOVED college football. I consider it a harmless little 'white lie'. My husband considers it a premeditated scheme to get a ring on my finger. So, several grueling years of football filled Saturdays (and one wedding ring) later, I finally broke the news to him. I can't stand it. I don't get it. I don't understand how you can LOVE one particular team over another SO much. I don't understand ANY of the rules. For instance, why is it that when one team kicks it to the other team, they do something different EVERY time? Sometimes they run with it, sometimes they let it fall and just WATCH it roll to a stop, and other times they catch it and drop down to their knee?? How do these poor kids even know which one to do? Seriously. I don't get it. I like the tailgating part of football, of course, but the rest of, not so much. Until now.

Barry belongs to an online 'message board' site for Nebraska fans, called Last week, someone posted a comment that this Friday night there is a piano tailgate in Lincoln, NE that will benefit the Cystic Fibrosis Foundation. The commentor urged anyone that was in town this weekend for the game to attend the event, stating how great of a cause it was and also listing all of the evening's festivities. Barry responded with a post that said we hoped to be able to make the fundraiser, seeing as though our daughter has CF. And this is where the story begins...that is all it took for this group of Cornhusker fans to rally together for some family they've never met and raise several hundred dollars in our daughter's name. The man even offered to personally buy us tickets to the tailgate to ensure we were able to go. Guess what? Now I get it. Now I understand why people have a favorite team. Now I understand what it means to be a true fan. These people take care of each other. They respect each other and share a sense of friendship even though most of them have never met each other. How cool is that? I'm sure any other team would have done the same for one of their fellow fans, but for my husband's sake (and my marriage!)....GO BIG RED!!!!

Wednesday, October 6, 2010


Have you ever had one of those moments where your heart feels this unexplainable rush of peace when your head is telling you to fall to pieces? I guess I shouldn't say 'unexplainable', because for me I know it's God....I had one of those moments today. And I am so thankful for that moment.

We had clinic this morning. I had the car parked, 3 kids, 3 bags, 1 stroller, and a hot cup of coffee all into our CF Center at Blank Children's Hospital by 7:45am (for that I am also thankful!). We take care of my 11 mo old niece during the week, so she had the priviledge of coming to clinic with us today (she's actually my GREAT niece, but that just makes me sound old). So our little troop arrived at the office today ready to take on the world. Little Miss Rylan walked in with her curls swinging, jumped up on that scale, twirled around and just smiled up at the nurse. She was so proud of herself, it was like she knew she had grown. Even though she is pancreatic SUFFicient (meaning for now, her pancreas is working the way it should and absorbing nutrients without the help of enzymes), her weight has still been under scrutiny. Studies show that cystic fibrosis patients with BMI's of 50% or higher have better lung health and are less prone to infection. BMI, or body mass index, is where they calculate how healthy a person's weight is when compared to their height. Rylan's BMI has been as low as 1%. Soooo, even though we don't 'think' it is CF related, it's still been something that has raised some red flags. Our last clinic appointment we were at 8% and TODAY, dun dun duuunnnn, drumroll please.....we were at 25%!!!!! That is SO incredible, we were all jumping around the room (including our dietician). All of that peanut butter and guacomole she's been eating by the spoonful is finally paying off. We've got a ways to go before we hit 50%, but I know we'll get there!!! Thanksgiving is right around the corner, right??! Next piece of great news, her blood oxygen level is 100%. Can't get much better than that...

So, as clinic went on...I did hear something I wish I could push out of my brain. I heard the word colonized. Ugh. Really? Colonized? Translation = because she has had pseudomonas so many times in such a short period of time, they think it may have taken up shop in her lungs and we'll be unable to erradicate it. BUT, they did say possibly colonized. So, I'm not going to let it upset me...what we've decided to do is go on and off TOBI (the inhaled antibiotic) every 28 days for 6 months (or however long it takes to get 3 negative cultures). I'm confident this, along with tons of prayer, will do the trick. So peeps, I'm asking for your help, pray. Pray. Pray. Pray.

So, before I sign off I want to tell you about 'the moment' I had. Our last stop was the x-ray lab to get updated pictures of her lungs. As we were sitting in the waiting room, my mind is reeling. It's going 100 mph and all I can think about is the word 'colonized'. I can visualize the stupid word, for goodness sake. I keep thinking about what life will be like if we DON'T get rid of the PA. She'll be on and off different antibiotics for the rest of her life. I'm thinking over and over again, that's just not fair. Life's not fair. And on and on and on. All while Rylan is making Mia giggle by sticking EVERY sticker we've accumulated throughout the morning on the stroller, the arm of the chair, and my face. As Rylan is squirming around on my lap to get a better angle at my forehead, she looks up at me with those big 'ole blue eyes just as I hear Celine Dion belting out the words to the song 'A Brand New Day' over the speakers. The exact part that I heard was "Hush love, I see a light in the sky. It's almost blinding me. I can't believe I've been touched by an angel with love". Aaahhhh. Yep. It's a brand new day. Thank you, God, for the reminder. My husband and I were JUST talking last night about how all you really need is love. Thank you, God, for all the love that is surrounding me in this exact moment. XOXO

Tuesday, October 5, 2010

The Big Olivia the Pig Birthday Partay!!

Ry Ry celebrated her big second birthday on Saturday with her favorite 'person' in the whole world...Olivia the Pig!!! She had such an amazing day, thank you everyone for making it so unbelievably special! For those of you who may not know who Olivia the Pig is, she loves all things fancy and LOVES the color red! So mama went a little nutty, oh well! Birthdays are special!!

Red-velvet cake, SO yummy!

She wasn't quite too sure what to make of all the singing!!

Pre-party anticipation!

Our welcome greeter!

Who ever said plastic tableclothes and folding chairs weren't fancy??!

Red feather boa chandelier, CHECK!!

Our next CF clinic appointment is tomorrow morning, bright and early at 7:45am. We get labs and x-rays done, so it should be close to 12-12:30pm before everything is said and done! Keep Rylan in your thoughts and prayers and wish for ALL fabulous news! Maybe she should wear her striped tights and tutu for good luck???