Traditions.....

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!!!

SCORE!!!

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

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 why.....you 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?

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 words....so 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.

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!)

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 medications...in 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 terms...no. 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

Go Big Red!!

Sooo...my 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 it...um, not so much. Until now.

Barry belongs to an online 'message board' site for Nebraska fans, called HuskerBoard.com. 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!!!!

Eat.Pray.Love

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

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???