This Family Believes

One of my most vivid memories from childhood was lighting the Advent wreath each night at dinner. It's a tradition we've continued with our kids.

Here's a contemporary spin on the traditional Advent wreath.



To get this look:
Glass cake platter (minus the cover)
3 purple or blue pillar candles
1 pink candle (lit the Third Sunday of Advent for "Joy")

And there you have it.

More great kid-friendly crafts for celebrating Advent with little ones

Colin made an adorable advent wreath in PreK this week (I'll post pics on Thursday when he gets to bring it home :).

They used green salt dough or play dough to create the circle and birthday candles. It's the cutest, mini-version of an Advent wreath I have ever seen.

1st grade did one of the craft ideas listed on the website link above. They made their wreath by tracing their hands on green construction paper and pasting together.

Our tree is up and lit.

Thanks to the Frasier Tradition Christmas Trees and the Kysely Family for this beautiful donation to our kickball silent auction. You want one now, don't you!

The King Shall Come...

Season of Waiting

Happy First Sunday of Advent!

Minus a few glitches (i.e. kids getting sick) this weekend was a blast.

Here's a quick run-down of what we did...
Wednesday night-left for Fennimore
Thursday-spent Thanksgiving with my family
Thursday night-got home late and unpacked our bags
Friday morning-5 am went Black Friday shopping (CRAZY!)
Friday afternoon-re-packed our bags, left for Madison
Friday later in the afternoon-did some shopping, checked-in to our hotel, went swimming

Friday night-ate at P.F. Changs followed by a pillow fight and pajama party in room 306




Saturday morning-kids woke up super early, Trinity was feeling a lot under the weather. Topel boys had male bonding at breakfast. Topel girls had female bonding by sleeping in late :)
Saturday later in the morning-made Cooper his first teddy bear for Christmas

Saturday afternoon-went home and got out the Christmas stuff!
Sunday-Mass in the morning; picked out a Christmas tree


I have been waiting all week for this weekend. Now, it's come and past :(

Researchers tell us that the average person will spend 5 years of his or her life waiting in line, 2 years playing telephone tag, and six months sitting at red lights.
It seems like we're all waiting for something, so why not use these experiences to enhance our Advent disciplines by prayerfully waiting, joining our prayers with Isaiah, Zechariah, and all the saints?

A Thanksgiving Tradition

Last year we started a new family tradition. The Friday after Thanksgiving (yes, the same day known to many as "Black Friday") just the 6 of us go to a hotel for the night, do a little shopping, and on the way home we pick up a Christmas Tree.

Chris and I realized last year that we NEVER go on a vacation just the 6 of us. It also marks the anniversary of us moving into our new house after rebuilding after our fire. Chris had worked so hard to have us in our home for our first Thanksgiving with our new baby. That first night, we slept on the living room floor. My poor sister got the flu and will never enjoy Rocky Rococo's pizza again. Chris's truck died in below zero temps as we were coming home from picking out a new dining room table. A day we will never soon forget.

From our family to yours...bless you and your family as you celebrate your traditions new and old.

We wish you enough.
We wish you enough sun to keep your attitude bright.
We wish you enough rain to appreciate the sun more.
We wish you enough happiness to keep your spirit alive.
We wish you enough pain so that the smallest joys in life appear much bigger.
We wish you enough gain to satisfy your wanting.
We wish you enough loss to appreciate all that you possess.
We wish you enough. –Bob Perkins

It Could Be Worse

Confession: Please let what I am about to say go completely off the record!

I'm not usually a pouter when it comes to CF. But today I'm feeling quite trivial. I'm sure other CF mamas can feel my pain. When you've poured so much blood and sweat into getting your child to gain weight or pounded the heck out of their lungs to get rid of a nasty cough and to no avail you fail. CF is in control and not me. Well, at least that's what I feel like today.

Just shy of literally inhaling a stick of butter for the past week with every feed, Cooper still isn't gaining quite the weight he should be. His tummy is enlarged (=malabsorption). Oddly enough our Cayden, who usually is a rockstar at packing on the pounds, is also at a plateau. The pulmonary team's course of action will be to increase Cooper's enzymes yet again (although he is already on a high, high dose for his fat intake) and increase the dose of omemprozale (for suppressing acid). Cooper is transitioning to more bottle feeds so the dietitian suggested we add more formula/fortified breast milk to his diet. If things continue the way they have been, we may go down the "switch enzyme brand" route. We also talked with the doctor about Cooper's quick switch back to coughing shortly after he finishes a course of antibiotics. Dr. Green thought it would be worthwhile to keep him on antibiotics chronically through winter in an effort to keep his immune system working over time to combat any viral or bacterial infections that he might be introduced to.

Cayden has graduated to ENSURE-a whopping 350 calories per can! Caydens BMI (Body Mass Index-weight to height) is looking super aside from of his lack of weight gain. Cayden was sick this past week and since starting bactrium (which has an anti-inflammatory component) we have seen an immediate turn around in his cough. So lung-wise we are really happy with is progress! He even PR'd in his PFTs today!

So while it definitely was not the news I was hoping for today, I'll take it. Because it could always be worse.

I've been too busy to update with pics lately. But here's the family picture I picked for our Christmas cards! Enjoy your weekend.

When I Think About Tomorrow

Four words. Cystic Fibrosis Education Day.
If your local CF clinic provides one, definitely go. I have been trying to go ever since Cayden was diagnosed and finally five years later I made it! There was just SOOO much info to process. Here is a recap of my top 3!

1) Dr. Beall shared some amazing progress in drug development. Namely the "Pipeline" which he is referring to in terms of drugs currently in studies.



Start to finish a study drug can take up to 10 years to be available to patients. Even in phase three (the last and final) drugs have a 20% failure rate.

Just today, the first drug of its kind to correct the basic defect in patients with CF, made the spotlight:
New England Journal of Medicine Publishes VX-770 Study – CF Foundation

2) The most eye-opening moment of the entire day was hearing all the legal rights of CF patients. From tips on getting a job, health insurance, and dorm life I realized that there are bigger battles we have yet to face with our children. When I think about what the future holds it is simply scary and unknown.

3) Twins from Japan shared their amazing story of beating the odds and living into their 40s. Their story really reaffirmed what Chris and I are doing with our children. We keep their lives normal, we teach them responsibility and independence, and we allow them to "hate CF" (as long as there is a time and a place). It did raise some curiosity for me, as a mother. When will my kids ask me if they will die from CF? Even with all the hope and promise, the affirmation from the CEO of the CFF that transplant drugs more than likely will not be something we as a new generation should ever have to face, I have to be brutally honest. Because I know, and I am certain, that the day will come when they sense that CF is a threat to their life. That it is serious.

Read more about the Power of Two

There Will Be NO Hatred Here

Period. If you have been following this blog (and even if you haven't) there has been quite an uproar. More comments than I can fathom being made on one post that had absolutely nothing to do with the debate. the criticism. the judgment. the hatred.

And there will be no hatred here.

That's not what I'm about. That's not what my family is about. And that most certainly is NOT what my blog is about.
And for that very reason I have changed my comment moderation for approval on each and every posting. Because I do not have the time and energy to blog as it is. But when I do it is to share wisdom, hope and faith that my children share with me every day. To tell friends and family near and far the positive life my children are living because of the CF Foundation's amazing accomplishments over the past 5 decades. At the very least it is a story of perseverance. And when I do have the time and energy I do not need to be beaten with unkind words. Our family survives on support, pray, and our faith in a God who is all-knowing and all powerful. Rich in love and mercy.

There will be no hatred here.

So if you are reading for the first time, or the second, or perhaps the 56th time I am not writing this blog as an opening to some great debate or to ask for your approval. I am simply sharing our journey. I am proud of my beautiful family. If you do not agree with how we are living our life, please walk away quietly. And if you wish to build us up with positive comments, you are welcome to do so.

And if you need one more reason as to why I blog. It is for such a comment as these:
I received this post on my blog Saturday.

Christie wrote...
I'm sorry that people are feeling a need to attack you and your beautiful family! I'm currently awaiting results on my youngest son for CF. He had his sweat test on friday and I'm hoping they'll call me monday. I have 4 children and he is the 1st one thats had any health problems of any kid. However, even if he was the 1st, I would probably STILL have had the other 3 because its the choice of me & my husband. It is no one else's business but your own. People with CF are living healthier and healthier lives now. Medications & technologies are getting better and better and I want to hold out hope that there will be a cure by the time my son begins his family. CONGRATULATIONS to you for wanting & having your beautiful family. Your children will learn your love and how beautiful life is and thats an awesome gift! I just found your blog today while I was doing reasearch on CF to pass time while I sit by my phone waiting for results. =) THANK YOU!!!!!

Hope has two beautiful daughters
their names are Anger and Courage.
Anger at the way things are,
and Courage to see that they do not remain as they are.

+St. Augustine of Hippo

We keep moving forward, opening new doors, and doing new things, because we're curious and curiosity keeps leading us down new paths.
+Walt Disney

Help Babies with Cystic Fibrosis

Trinity helping Dr. Green label Cooper's sputum culture

Pepsi is giving away millions to fund great ideas. Both first and second ranked submitted ideas will be given $250,000 towards their idea. Right now, Cystic Fibrosis is ranked #2. Voting continues until November 30th so vote everyday!

The money will be used for hypertonic saline studies in infants (that's exactly the study Trinity is currently enrolled in).

Take a moment and VOTE NOW!