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 started...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 CUE.....here comes Ry with her toy catalogue in hand asking for a pen. Too stinking funny.....it 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.