We Wish to Welcome You....

...to Munchkin Land!


As the musical "Wicked" says, we're gonna be Popular!


See all our fun on the way to Oz!
Happy Halloween and Feast of All Saints. All you holy men and women, PRAY FOR US!

Olive with a Twist Project!

Finally the finished product of the photo shoot the kids did a few weeks ago in preparation for the foundation's fourth annual Olive with a Twist
We're promised more of the captured personalities on the 12th. Chris and I will be going to volunteer the event so I'm sure there will be plenty to share!

The Krakora Studio in Madison donated their time for this project and I can't tell you how impressed I was with them. It was such a fabulous experience for our kids and I have no doubt, will be the talk of the Gala! Thank you Mike and Heather!

Follow this link to check out the cute honies in this picture!

To view all the photos from the session click on this link to view the Gallery Type in password "20cfgala10" when prompted. Find the kids' names on the scroll on the right hand-side. But hurry, the gallery expires November 26th!

A List

I thought I'd give a quick update post. Cooper's cold is on the mend (FINALLY). He finished his antibiotic course today and it's his half-birthday. Already 6 months old! Cayden ended up on bactrium as well since his cough seemed to continue and his sputum culture lent itself to the fact that he is not only combating a cold virus but also staph.

I wanted to share with you a list of all the things I know ONLY because my kids have CF. Below are a few of the most noteworthy. Enjoy!

I only know...
+that poops floats when nutrients/fat is malabsorbed. Sinking is what we aim for in the Topel house :)
+that there are different "families" of antibiotics.
+that pseudomonas is not a made-up word. it's a bacteria.
+that vests cost an average of $17,000.
+that chromosome 7 is the CF gene.
+that males are sterile.
+how to pronounce long, multi-syllable names of drugs, bacteria.
+that MRSA is code at hospitals to treat you like you are a leper.
+that is takes 3 negative sputum cultures to be taken off of "isolation" status at clinic visits.
+that the CF foundation is the most efficient non-profit, donating 90 cents of every dollar to research.
+many very amazing and wonderful people who have CF.
+that you can give a 2 week old applesauce (so they can take their pills).
+that you never know when you might need enzymes. we take them with us, in multiple bottles, everywhere we go.

...all because of CF.

And, the list goes on. Add a comment of something you know only because of CF.
My next post will hopefully include a very cool project the kids were able to be a part of to help with the Madison CF Chapter's Gala "Olive with a Twist." I'm really excited to see the finished project and will share it when I do!

Still MRSA FREE!

It's been a busy, busy week.

What I've enjoyed...
+Making Jack O' Lanterns with the youth group that bring God glory!


Here's a link to the poem we used to create these. It's an easy and great kid-friendly craft :)
+Spending time at Mom's Group. We started a new book study "Who is My Neighbor." I love it already.
+My husband's support and love.
+Watching my kiddos go crazy over used, hand-me down costumes for dress-up!

+Colin telling me that I must be going to work. I'm wearing "working clothes."
+Seeing my laundry pile nearly cease to exist.
+Getting a new book I ordered from Amazon: "Sabbath."
+Coming home from religious ed. to a CLEAN and QUIET house. Everyone was already tucked into bed when I got in.
+Knowing next week will not be as nearly exhausting as the current one!
+Celebrating Cooper's first tooth coming in!

AND...
the "icing" on the cake (haha. excuse the pun)...
+finding out the kids are sill MRSA free. This is probably so much more very amazing to me; the fact that out of all three of them only Cayden grew staph which is a "no biggie" when it comes to sputum cultures. Heck, it's nearly nothing. Trinity and Cooper; not a thing! UNBELIEVABLE!

To end, here are some quotes from St. Paul of the Cross who the Church celebrates today!

"Your crosses dear God, are the joy of my heart. How beautiful to suffer with Jesus!"

"Christ Crucified is a work of love. The miracle of miracles of love. The most stupendous work of the love of God. The bottomless sea of the love of God, where virtues are found, where one can lose oneself in love and sorrow. A sea and a fire or a sea of fire. The most beneficial means of abandoning sin and growing in virtue, and so in holiness."

"We ought to glory in nothing other than the Cross of our Lord Jesus Christ. You are blessed and don't know it. You have Jesus Crucified with you."

Autumn Blessings

I was all ready to blog on the great appointment that my kids had. What an amazing weekend we had camping. But before I post a new blog I like to see who's reading my blog. I was super excited to see three comments on my last post and so, unknowingly I clicked. Someone I do not know, and clearly does not know me used the opportunity to tell me how "selfish" I am to have continued having children being carriers of a disease. It felt like someone punched me in the gut. Literally. And yet, it didn't surprise me. After all, our world has completely lost the sense of the word "love." Love literally means suffering. It's the good and the bad. It's real life. I would do ANYTHING in the world to trade CF in for healthy children. But not at the expense of losing my precious, beautifully and wonderfully made children. I have blogged about this before but I'll do it again: Chris and I REFUSE to let cystic fibrosis control our lives. It has already done so much to our family unit. It will not have our happiness and our ambitions in life. We have (as the Teen Timeline I'm using to teach salvation history to the Catholic School middle-schoolers puts it) divine perspective. That is the ability to see beyond our immediate suffering. To see the larger picture, the will of God.

After I read the opinion of someone passing judgment on a complete stranger I read the third comment. Not ever hearing a word about this from my husband, he responded. It brought tears to my eyes.

Dear Pink Cupcake,
I am the dad of my wonderful kids and one lucky guy to marry such a giving wife. You should really think before you speak, because if you have read anything in these blogs, you would realize my wife is amazing and my kids are precious lives. Maybe in your world birth control, and abortion is your answer, but it is not in our vocabulary. We cannot play God and we should not have that power either, there are way too many people like you that think that are "selfish."

I knew sometime in my kids life that someone may judge our decision to be open to life and i never knew how i would respond to someone like you. I thought i would be worried what you may think, but then i look at these beautiful children and say i wouldn't trade them for the world. Yes our life is very very different then most. But we do not just sit on the sidelines and make this disease there lives. We work and work so they aren't sick, raise money for more tomorrows.

I would like you to do me a favor, as you are so bold to write that to my wife. Why don't you tell my kids that they shouldn't have any brothers or sisters cause they might have a genetic disorder? That sounds really selfish if you ask me. So take your Wow and shut your mouth.
Chris

All I can say is WOW. I love you, Chris. You are my rock.

OK, that was a side note. Now on to what I really wanted to blog about: Autumn Blessings.

Our weekend was filled with great things. Friday we had a 3 for all CF clinic appointment. And...all good things for each and every one of the kids!

Cooper- Weight gain, check. X-ray improved, check. He still has a bad cough though so we switched antibiotics from augmentin to bactrium.
Cayden- No weight gain (although his dietitian was not surprised since he gained 2 lbs last time) and he improved on his PFTs (pulmonary function tests).
Trinity-Weight gain (yeah!) and of course, got taller! She'll be a model for sure with her long legs.

After a great check-in (three hours to be exact) we headed off to Lake Kegonsa with the Bourke family for some relaxing and fall camping :)

All ready for the Lantern Walk!


Cooper all bundled up!


The kids loved playing in the beach.


Leaves were everywhere.

The Great Debate

We enjoyed the weekend outside!



The kickball pictures I promised..facebook makes my life too easy. It feels like cheating!

I recently saw this question posted on one of my fav CF sites: Cystic Life (started by Ronnie Sharpe, a fellow CFer I met through blogspot-a social network for the CF community. And it's really a great debate among CF parents: When do you call the doctor? I'd thought I'd share my philosophy on this much contested question since, in my opinion, it's one of the toughest to answer. There are so many factors, so many conditions that weigh in. Here's my thought process:

1) LISTEN. When one of the kiddos start coughing I evaluate how wet/dry it sounds. Before my kids were diagnosed with CF I had never used such adjectives in conjunction with the word "cough." And then there's the other question: how can you tell? Good friends of ours, the Needhams, who also have a son with CF told us: "You'll know." And, they were right.

2) COUNT. After the coughing begins it's time to do math. Yes, I keep tabs on how often and at what point in the day. At rest, the thick mucus of CF tends to cause more exacerbations. So typically the hardest part of the day for the kiddos is in the morning after a long nights rest after the mucus has had a chance to build up.

3) SIT. Simultaneously with steps 1 & 2 we increase chest PT from at the very least one time a day to two, even three, and sometimes four times a day.

4) And when all else fails after 5-7 days of 1, 2, & 3 OR a gradual deterioration. CALL. By that point I can just "tell" from the sound of the cough, the quality and quantity that there is no way this nasty cold is going to make its way out without a little assistance. The docs then will prescribe an antibiotic over the phone. Of course there is always the chance in real life that the antibiotic doesn't do the trick either and in that case there's more to this blog. But that's a story for another day.

So, what does this look like in my world? Take this for instance:
Cayden and Cooper both have coughs. Coopers started out with green drainage (aka boogers :)) from the nose and eyes. Increased PT and the green goop disappeared, nose drainage turned clear (good things...) Coughing slowed a bit. Then, it took a turn for the worse. Coughing quality worsened and frequency increased. Called the doctor after about a week and half since it looked as though he was turning the corner.

Cayden, on the other hand started coughing about the same time but no runny nose. His started with coughing during the middle of the night and to the point that it was waking him up from his sleep. Increased chest PT to 2-3 times a day but no change over the weekend. I decided to see how he did on Monday at school. Nearly NO cough :). Chest PT is amazing. SOOO simple, but such a great maintenance for lung functions. I swear by it.

Sometimes I take for granted how healthy they really are. And then, on occasion, it hits you when you least expect. On Sat. we were out and about enjoying the nice weather at a pumpkin farm and Cayden started coughing really hard from running so much. He looked like he was in so much pain. When I asked him what was wrong, he said "my lungs hurt." This was the first time we've seen him limited by CF. It broke my heart.

I hope that you are all enjoying the nice fall weather. We'll be camping this weekend with good friends. Thanks for reading...

Cooper is already 5.5 months old! Where has the time gone...