Confessions of a Youth Minister and CF Mom

The Not-So-Camping "Camping Party"

2012-02-13T19:47:00.000-08:00

Sweet Colin turned 5 on January 20th. As is his tradition since his real "birth" day snow came our way and turned one celebration into two to accommodate all his out of town family. Of course my January baby boy would want to go camping of all things for his birthday. So we compromised on a camping theme. I totally turned into a pinterest junkie. All the clever camp themed birthday party ideas were there!

Decor: Nature and outdoors

Food:
Menu Kids in a Blanket, Campfire Flames, Bug Juice, and Sweet Treats for all the Happy Campers :)

Best Birthday Cupcake Cake I have ever seen! River's Edge took my theme of camping and ran with it quite literally. I was super impressed :)

The rest is just pure fun!

Dear Colin,
We may not get to spend as much time with you as we wish but you will always hold a special place in our hearts. You were the only little baby we got to have without worrying you might have CF. Even before we knew for certain, our hearts told us. You are a miracle. A blessing. You are funny, outgoing but sometimes still shy. You pose silly in pictures and you spell things goofy. You call trail mix, mail trix and only suck your thumb when you have your green 'b'.

All joking aside, I thought I was going to pass out when the nurse announced you weighed ten pounds. You were a big boy with a huge heart! God knew we needed someone just like you to fit the pieces together. You keep us "normal" when life is too tough.

Your blue eyes are the windows to your soul. I could look in them then just like I can now and know exactly how you are feeling.

We love you. We can't imagine life without you.
Love,
Mommy

Sigh.

2012-02-06T19:56:00.000-08:00

The dates are marked on our calendar. In big blue letters.

February 3rd-Cayden done with TOBI
February 14th-Trinity done with TOBI

I love seeing the clear vials disappear from the fridge. It's always a big deal when a 6 year old exclaims. "No more TOBI, question mark. YES!"

In addition to inhaled TOBI, Dr. Green also treats pseudo with the oral antibiotic ciprofloxacin (cipro). The combination of antibiotics has shown in clinic studies to reduce the prevalence of PA in future cultures.

Here is a graph of an eradication procedure for early or recurring PA done in 2008. Colisin is another common nebulized drug used for the purpose of killing PA, but it is more common to start with TOBI.

I am such a CF geek. In fact, I know I am when I enjoy looking at charts like this.

Cayden was in a study as an infant using TOBI and a combination of Cipro (or placebo) in patients who grew PA before their first birthday. However we couldn't complete the study because Cayden's liver enzymes were too elevated to begin.

We're really hoping for good results on the 13th because, yes, we could get more use to an extra 2 hours in our day.

Next post will be most definitely an update, but Colin's out-of-this-world 5th birthday party will also be spotlighted. After all, he deserves his own post every now and then.

Exciting Day for the CF World!

2012-01-31T19:30:00.000-08:00

This is such huge news. Today marks a momentous change in the way we view treatment for CF. The first drug ever to target the underlying problem in CF has been approved by the FDA. And while it doesn't address our specific type of mutation, it gives enormous hope as a similar drug is in the works.

FDA Approves Kalydeco (VX-770) — First Drug That Targets the Underlying Cause of CF - CFF

One box down, One to go

2012-01-23T12:09:00.000-08:00

A week into Cayden's pseudo treatment we got word from the clinic that Trinity had also cultured for pseudo.

TOBI® (Tobramycin Inhalation Solution, USP) is a prescription inhaled medication for cystic fibrosis patients whose lungs contain bacteria called Pseudomonas aeruginosa. For the purpose of this blog post we will refer to it as PA.TOBI is given in 28 day cycles especially for people on it chronically. 28 days off and 28 days on. At the end of 28 days they will be re cultured. If they do not grow PA we will stop TOBI. If they continue to grow we will most likely repeat and possibly change to Colistin at some point. Many will never get rid of PA, but the important thing is to minimize damage to the lung tissue.

Between the ages of 6 and 10, about 40% of patients with cystic fibrosis have Pseudomonas aeruginosa infections

By the age of 17, nearly 60% of people with cystic fibrosis have Pseudomonas aeruginosa infections in their lungs

Up to 80% of adults with cystic fibrosis between the ages of 25 and 34 have Pseudomonas aeruginosa infections

To learn more about taking TOBI you can visit TOBI's OFFICIAL WEBSITE

Each of the kids is on a 28 day cycle and each treatment takes about 20 minutes. We start each day as close to 6 am as possible. With antibiotic nebs we have to start with chest therapy (30 minutes) followed by TOBI (20 minutes). We try to accomplish all this before 7 am so we have enough time for breakfast and getting dressed for school.

I have to admit as little of fun it is for our kids, I hate it even more. We have lost 2 hours of our day and I for one am not a morning person. TOBI is super sticky which clogs our nebs so by the time we get everything working properly we're looking at another 15-30 minutes a day. In the words of our favorite bedtime story "Where the Wild Things Are" PA "roars its terrible roar and nashes its terrible teeth!"

As much as we hate TOBI we have to be thankful for it, because not too long again CF patients who cultured PA were not given much longer to live. The fact of the matter is that when CF patients do not treat Pseudomonas aeruginosa, lung function declines about 2% a year. That could be about a 10% loss every 5 years.

Fortunately neither Cayden or Trinity are symptomatic at this point, but it is still creeping its way into their lungs. As adults they will most likely always culture PA, but while we can do something before the damage is done we will.

It seems like everyone we know lately with CF has cultured PA. It's interesting to see the spurt of something like this so widespread in just our circle of the CF community. One of which is little Maddie a friend we have met via social network sites like Facebook and Cystic Life. Maddie is 3 and has had pseudo for an entire year. She is now hospitalized for 10 days and luckily her bronch came out with great results---PA is in her throat but not in her lungs. You can follow Sandy, Maddie's mom's blog at Mommy for Madeline.

Fingers crossed this will kick it...we have 2 weeks left to see the verdict!

The Trip of a Lifetime

2012-01-07T11:55:00.001-08:00

Alright, you're going to need a big cup of coffee for this post. I have so much to share with you from our trip to Disney. Where to start...Wow! That's really all I can say about Cayden's Make-a-Wish trip. It was an absolutely magical week for our entire family and it was so hard to leave Give Kids the World (the village we stayed at). Chris and I both cried as we left for the last time. But we will always have a piece of our hearts there!

I'll try my very best to capture all this trip meant to our family and the highlights of each day. We are so grateful to our wish granters for the trip of a lifetime. Each day Cayden and I sat down to journal about our day's activities so we wouldn't miss an ounce of the memories we had just created.

For starters, let me share a little bit about Give Kids the World (GKTW). To be quite honest I would like to wish for a week at this place alone. Forget Disney, Hollywood Studios, Seaworld, Epcot and the like. This place is magic in and of itself. We could have stayed at the village all week long and never been disappointed.

Give Kids The World is a non-profit organization that exists only to fulfill the wishes of all children with life-threatening illnesses and their families from around the world to experience a memorable, joyful, cost-free visit to the Central Florida attractions, and to enjoy the magic of Give Kids The World Village for as long as there is a need. Since 1986, Give Kids The World has hosted more than 107,000 families from all 50 states and more than 70 countries. Give Kids the World was founded by Henri Landwirth, a Belgian Holocaust survivor who spent 5 years in Auschwitz and Matthausen concentration camps. Landwirth immigrated to the United States, where he studied hotel management. While operating a hotel in the Orlando area, he became passionate about helping sick children fulfill their dream of a family vacation.

This place was unreal! Ice cream was available all day with no limits. Their slogan at GKTW is "Ice Cream for Breakfast." No joke, the Ice Cream Palace opens before the Gingerbread House where you are served breakfast.

The Village operates with over 1500 volunteers each week (yes, you read the 2 zeros correct) and only 120 year round staff members. The "angels" as they call them are all there for one reason: to serve your family. The most amazing thing is to know that the other 200 families there are also there for the same reason, because they too care for a child with life-limiting illness. Each time you come back back the attendant at the gate says "Welcome Home." It is truly our home away from home now and will always have a special place in our hearts.

Ok, back to the trip.

Monday morning, the day after Christmas our limo arrived @ 4:30 am. The kids were estatic! Colin said "Hey mom, look at the fancy car! The president is walking up to our door!"

Mommy was so caught up in the magic that she forgot everyone's meds in the fridge so we had to turn around 10 minutes on the way. That could have really been a damper in our trip.

At the airport Cayden was greeted by Jay from GKTW! When do you ever got a personal escort?!?

Every Monday GKTW celebrates Halloween and the main street was decorated in pumpkins, spiders, and costume-making stations.

Tuesday was our most and least favorite day all rolled into one!
The morning began with the football teams from FSU and Notre Dame stopping by to visit GKTW and sign autographs, play and hand out ice cream.

Cayden loved hula-hooping with all the players.

Both teams warmed our hearts. Thank you for making the stop to make our day brighter :)

The kids were really excited for Magic Kingdom so we headed there next. For those of you who have been do Magic Kingdom before, you know the time it takes to a) park, b) get on the tram, and c) cross over with either the ferry or monorail. For those of you who don't, I think you get the picture. It takes a while. Just after we had gotten to Magic Kingdom and watched the Castle show it poured! We got so wet that we decided to head back and take the 45 minute trip back to where we had just come from. Here's our picture to remember fondly our most soggy moment:

Colin even took a picture with his 1st charcter! We were so worried about how he would do with his fear but he was so brave and really overcame it this week!

Wednesday the REAL Santa came to visit the Village. He was vacationing for the month in FL. I say real because the boys asked Santa if he was real and he said "Sure I am." But they investigated even more about his beard and if he was the REAL Santa his beard wouldn't move if they pulled it. Santa gave them the nod, they pulled his beard and well, it was REAL! They were in heaven.

Wednesday was full of horseback riding, SeaWorld, and a Pirate Dinner Adventure.
Feeding the dolphins was such a cool experience. Definitely my favorite part of the trip!

Thursday we met Minne and Mickey Mouse. It was so great that each day our village had different characters visit from the theme parks.

Our next adventure took us flying high. We got an air tour thanks to Mauiva Air tours and the boys both got to fly the plane. Colin and I got special permission to fly over Magic Kingdom since it is a no-fly zone!

The rest of our day we spent at GKTW and getting some very important things done!
The Castle of Miracles is home to over 86,000 stars of hope representing all the children and their families who have visited the village. Cayden got an exact replica to keep at our house to remind him of the magic and love he experienced on his wish trip.

We can always go back and visit to see his star using a special passport.

Friday we headed back to the [dreaded] MAGIC Kingdom. We say dreaded because lines had grown to over 2 hour waits for rides and the crowds were unbearable. Cayden's wish pin was amazing getting us to the front of lines as fast as possible. Cayden's favorite ride was Space Mountain. We met a ton of characters, but Trinity's favorite was Rapunzel!

After Disney we headed to Medieval Times. The kids loved eating with their hands (except for Colin)!

Saturday was our last full day in FL so we took in Hollywood Studios and met our beloved Toy Story, Phineas and Ferb, and Cars Characters! After lunch we met up with the Loof family from Jefferson to spend time swimming at their condo. The excitement got a little bit crazier with Cooper hitting his head, a trip to the ER and 6 stitches! We got home just in time to ring in the eastern New Year's!

As we packed up to leave we were in tears. Cayden was especially heartbroken to leave his balloon behind, but decided to leave his balloon he had bought in the lobby at GKTW for other kiddos to enjoy. It was so sad for him to say goodbye but it would have been too crazy to fly on a plane with his balloon!

Each day when we returned the wish fairy had left presents for each of the kids on our kitchen table. They go above and beyond with all the gifts. It was most special because for the first time Colin wasn't left out and not including because he isn't like his other siblings. For the entire week he was given the most special love and wasn't told no. That was what made our stay at GKTW so unique.

Thank you for letting us share our trip with you. It will be forever in our hearts and we will never forget the most magical week of our life. Thank you GKTW and Make a Wish! We will always have a special place in our hearts for you. Until the next time we get to hear "Welcome Home..." thank you for making it such a memorable trip!

Hustle Bustle

2011-12-14T21:11:00.000-08:00

We are so busy right now. To say we can barely slow down to breathe is an understatement.

Tomorrow night is our Make a Wish party to get all the paperwork finished for our trip to Disney. It's easy to forgot we have Christmas to celebrate before this big trip. Here are some pictures from our this past month as we decorated for Christmas and did some tree shopping at the Kysely's. Always our favorite time of the year!

Our Nativity Stable is filling up with stickers each night as we pray our way through Advent.

Our Christmas tree hunt was an easy one this year. We found ourselves a winner!

Clayton and Cayden

Time for cutting...

Trinity's turn

Timber! This year we competed with soggy shoes instead of snow as it as too warm in WI still.

Time for the star. Our trees always look taller inside!

Colin proud of last year's ornament he made in PreK 3

Trinity decorating

Cayden

Cooper...well he slept the entire time tree hunting and was just not into the whole "decorating the tree" thing.

Here's a pic of all 4. So much fun in such a small wagon...

Reaching the Finish Line

2011-11-15T19:00:00.000-08:00

Here's a long lost picture from Colin's first day of school.

It seemed as if the anticipation couldn't be any thicker. On Friday we headed off to Madison for the "weigh-in" that we had been working ourselves up to. And so, we did what all good CF mamas do. We went to McDonald's.

No. Not after. BEFORE!

Trinity ate half of a mighty kids meal with 2 slices of bacon, a chocolate milkshake and fries. We did the usual mask ups in the elevators and headed up to the second floor. They called Trin's name and without looking back we headed for the check-in room.

As I waited for the scale digits to finish calculating it was nearly killing me on the inside. Did we do enough? Could we have possibly gotten her to gain something? Anything?

The numbers stopped. Kilos. The nurse presses the conversion button.

My heart nearly jumped out of my chest with sheer joy. Deep breath. She did it. We did. Trinity gained almost 2 lbs in 6 weeks. In my heart of hearts though, I know she only did that in the last 2 weeks on her appetite stimulant. We weren't out of the woods yet, but I felt like I had finally reached a place of comfort.

Our plan is to continue with the appetite stimulant, however people's bodies can become immune to them. Our dietitian suggested cycling the drug if that happens. In the meantime we will also change her Zantac to a stronger proton inhibitor which for CF patients maximizes their enzymes effectiveness.

For all my fellow CF mamas, here is a really great new site clinic shared with us on Friday for CF recipes called CFChef
One serving of the Banoffee Stuffed French Toast is 1100 calories!

We won't be back to clinic until after our trip to Disney which seems too close to be real!

Monday our doctor from clinic called to tell us our three checks for MRSA all came back clear! After 2 long years we can finally say we are MRSA free again. The infection control head told our doctor to personally thank us for adhering so well to the eradication protocol. Remember those chlorohexidine baths?!?

It's great to have such wonderful things to take us through the cold season :).

This picture of Cooper says it all!

Pray for Rain

2011-11-07T12:18:00.001-08:00

It's just a figurative expression, but seriously we need prayers! This Friday is Trinity's big weight in and the moment of truth for how the appetite stim. is affecting her eating habits.

Our helping hands site is up and running. We've had a few takers and are really enjoying seeing how it works. Thanks to those who have stepped up and taken a "turn"!

I will post more on Friday or Saturday but we are very hopeful that she can pull of a 2 lb weight gain.

We'll keep you posted...

Here is a post-Halloween shot of the kiddos in costume. We are loving fall and the beautiful weather :)

Helping Hands

2011-10-20T16:36:00.000-07:00

On my day off today, I tackled winter clothes sorting, costume shopping for Halloween and...created our very own Helping Hands Site (thanks to my near and dear friend Catherine). As if she doesn't have enough on her plate, she took time amidst chemo treatments for cancer to help me finally get the ball rolling.

Lotsa Helping Hands is a website that answers the most common question we hear "What can we do to help?" in a very 21st century sort of way.

All you need to do to join is an email address. From there you will go to our community page: Topel's Helping Hands

Request to join. After we "approve" you as a member, you will receive an email letting you know what else you need to do to finally be officially in our group!

For now, we have set up 3 times a week for someone to help with nebulizer treatments and therapy (about an hour and a half time committment) and a few meals. The calendar on our site tells you when we are in need of help and let's you select which need you can meet for us. The site is very cool in that it sends you reminder emails the week and day before, as well as the day of. That's something I need for every task in life! I'm sure we will add more needs like play dates for Colin during clinic appointments or rides if an appointment is in the afternoon and we won't be back in time for school pick-up. Please check our site for more details as we learn more about how beneficial this will be for our family.

I also wanted to give a quick update on Trinity. We have been more than blessed with yogurt scouts and shoppers alike, but much to our dismay she has been resisting even the more with every ounce of our pushing food on her. So we have decided to back off a bit and give her some breathing room. 2 weeks ago we increased her enzymes and have not seen any changes in weight. The next step will be a different acid reducing medication. After getting a lot of great perspecive from other CF parents on getting GI tubes at such a young age, some of them suggested appetite stimulating drugs as an alternative option they were offered. I will definetely be bringing that up when I talk to our dietician next.

So in the meantime, please pray for a healthy, ravenous appetite. That's what we need the most before we return to clinic on November 11th.

Appointment Update

2011-10-01T19:17:00.000-07:00

We spent all of this past Friday with clinic returns for all three kiddos since their weights were all a bit low this last trip to the doctor. We were well over due on our their labs so we did 3 xrays+ 3 labs+ 3 flu shots. Just for fun :)!

Cayden is up nearly 4 lbs (praise God!) which was a huge relief since his weight dropped so much from his cough at last clinic. He is steadily getting more used to PFT's and Dr. Green is confident that he will be a pro at them in no time.

Cooper is also up 2 lbs even though we are barely trying (and actually purposefully cutting back).

Trinity also gained weight but a very small amount. And looking at her growth chart she does little change from month to month. And that's when the conversation took me to somewhere I was not at all prepared to go. Dr. Green felt it may be necessary to seriously think about placing a g-tube (feeding tube) for nighttime feeds. This would give her an extra 500-600 calories a day while sleeping. It's hard to think of the decisions you have to make because of CF. All I can think of is a 14 year old girl wearing a swim suit and having a permanent tube coming out of her body. And this burden-of deciding her future is in our hands. It's just unfair. I think of all the choices we need to make that we shouldn't have to for our little 3 year old. Making the choice to have a feeding tube shouldn't be one of them. We should be making decisions like which school she'll attend and what spring recreation sport she wants to go out for. But not this. It is too permanent. Too scary.

For now we have 2 options in our treatment plan. The first is to increase her enzymes although she is already on a much high dose for her body weight. The dietitian asked us to give her 4 weeks at the new dose before doing a weight check. The second option will be to chance her proton inhibitor (acid reducer med) from her current med (Zantac) to something stronger.

In the meantime Chris and I are trying everything we can to help our little girl eat all the extra calories we can. We talked a lot last night after the appointment about the need for getting help at mealtimes just to have someone keeping track of her finishing her plate. The dietitian suggested a reward system for when she clears her plate and finishes 3 Ensure shakes. We started it yesterday at dinner time :)

On a side note: Finding store bought high calorie foods is getting more and more difficult. I went to buy yogurt we used with Trin when she was a baby that is made with whole milk and VERY high in calories. I couldn't believe it when I went to Wal-Mart it wasn't there anymore. And every single yogurt is NON-FAT. So if anyone knows of a high calorie yogurt please let me know. I'm looking for it!!!

Continue to pray for Trinity. We have 6 weeks until we return to the doctor and we are running out of options. I am so not prepared to make this decision for my three year old...

Ready to Kick It!

2011-09-22T20:22:00.001-07:00

We have so many wonderful things planned for this weekend's Kickin for a Cure event...we hope if you are able to stop by you will and enjoy the day with us!

I know I still need to upload Colin's first day of school pics and I promise to do that as soon as I can!

Here are some of the highlights of our weekend. As we think of all the hard work and all the sleepless nights, we can't help but feel completely excited for all our hard work to see it all unfold. It is so amazing to stop during the day and step back to realize for just a moment and that all this is happening because so many want to help find a cure for CF. Here is a little preview of what we will be sharing with people as they arrive with a list of the day's events we have planned.

We’re so excited that you are able to share this special day with us. On behalf of our entire family we are forever grateful and humbled by your presence here today, because without you there would be no hope for a cure to this terrible disease that consumes our entire lives. When our days are long and we feel as though we cannot go on any longer, we think of today. And it keeps us fighting. Thank you for helping us celebrate and for being truly wonderful people who are looking forward to saying that a cure has been found for cystic fibrosis! Enjoy your day!
Love, The Topel Family

A Schedule of Today’s Events
9 am Kickball begins! Watch local teams play for the championship.
*Concessions served all day! Please purchase tickets at the ticket table near the main entrance.
For the kids-kids activities, bouncy house, and face painting
26 Silent Auction Items on display in the Silent Auction Shelter near the DJ
11 am 50/50 Raffle Begins
1 pm Paddle Raffles Begin
Gift Certificates Adler’s Pub and Grill
Olive Garden Gift Certificates
Aunt Bernadette’s Sugar Cookies
Home-made Afghans
Home-made tie blankets
BP Gas Certificates
Qdoba Gift Certificates
Perfect Ten Kennels Gift Certificates
12-pk of Beer
Ladderball Game
Child’s Shopping Cart
1-4 pm Bingo (located in the shelter to the right of the Silent Auction shelter)
5-7 pm Southern-Style BBQ Dinner served by Capn’s Catering
Please purchase tickets at the ticket table near the main entrance.
6:00 pm Live auction (Silent Auction Shelter)-Vacation Packages, Autographed Russell Wilson and Donald Driver jerseys, 4 center court, courtside seats for a Badger's men's basketball game, Green Bay Packer tickets, Autographed Badger football.
6:30 pm Consolation Championship Game Played
7:20 pm 50/50 Raffle Ends
7:30 pm Championship Game Played
8:30 pm Silent Auction Ends

www.kickin4acure.com

A Little Emptier

2011-09-14T20:13:00.000-07:00

I have never personally known a person with CF who has passed away...until today.

We met Lauren 2 years ago at the Great Strides walk. She was a beautiful soul full of life and love for it. She was raising money like crazy for CF. Her mom even told us she had participated in a Pulmozyme study as a baby. Now it's a medicine that's changing the CF world.

But as brave as Lauren was at the age of 26 she also had a very real picture painted of the harsh reality of CF. She told us raising money for CF in hope a cure for her was not realistic. It was a fact that she knew. But she did it in the hope that newly diagnosed children would not have to face death.

Today, our "cyster" Lauren left this world. And it feels a little emptier. While we were friends on Facebook I can't say I really "knew" her. But I knew what she was about and how much she loved to change the world for the sake of our kiddos.

I know that CF is life-limiting but there is not way to describe the feeling when you "know" of a person who passes away who has battled CF. I choose my words very carefully. Because I will never say "passed away FROM CF." Everyone who battles any disease is never defeated. They have fought the good fight...

Breathe easy Lauren. We love you.

First Day of School-Day 1

2011-09-01T18:36:00.000-07:00

Trinity's First Day of PreK 3

Cayden is a 1st Grader!!!

Cayden with his teacher Mrs. Kotz

And a quick pose by the 1st grade window...

Colin's first day is tomorrow.

Happy School Year!

2011-08-31T19:55:00.000-07:00

We're excited to start school tomorrow. It's 10 pm and no one can sleep. It's almost better than Christmas!

Yesterday I had enough with the coughs and called the clinic for antibiotics. The results from their sputum cultures was good news-no pseudomonas or staph. We were so happy to hear that. Cayden and Cooper both grew bacteria normally found in the GI tract. The nurse could only speculate that their large coughs are bringing bacteria from the stomach to the throat. That is definitely a first :)

I also failed to post that Cayden received word from Make-a-Wish that he is being granted a wish: a trip to Disney World. Our family visit is on Sept. 12th so we will know more details after that. We are super excited for this adventure of a life time. I'll post more details as they come.

Happy School Year!

Dig In

2011-08-25T19:03:00.000-07:00

It's time to blog. Yes, I've been digging my heels at the notion but seriously when did I blog last?!?

In the history of clinic visits, this last one will go down as one of the worst. It was one of those three for one deals (all three kiddos at the same visit). Weight gains are down. Cooper even lost 2 lbs but was welcomed since he didn't even make the charts last time around. Trinity barely makes the charts but she's on the bottom of the charts. Cayden got a cold two weeks ago and after 10 days on Cephlax is still coughing. Time for an antibiotic change. This time the drug of choice will be amoxicillin. We've just changed insurances (Chris started a new job after 12 years) and of course getting a prescription filled is like parting the red sea. There is literally no way of getting around it. I felt like I was on the verge of committing a crime just to get a REFILL for crying out loud! They all need yearly blood draws and chest x-rays but without being given the green light I'm not about to spend "pretend" insurance money on said procedures. So we'll wait on those two for the moment.

Trinity's weight gain was the most concerning of them all. We were asked to increase her zantac to double (2 ml to 4 ml) for the next 2 weeks. We'll weigh her at home and if no change the next step will be to increase her enzyme dose. Cooper has all the symptoms Trin SHOULD be having as she is not gaining weight. He on the other hand, poops 4-5 times a day, has a ginormous belly the size of Mt. Everest and still continues to pack on the pounds. The dietitian suggested cutting back on his milk intake as he could be having some lactose issues and following up with a GI specialist if we don't see an improvement in symptoms by next clinic. The dismal results from clinic continued to mount: Cayden also did not gain any weight. He needs to up the ante in milk shakes and snacks before bed. Mostly his lose of weight gain can be attributed to the cough he has had, burning all his extra calories. We continue to do chest therapy 2-3 times a day to push all the extra gunk accumulating in his lungs out as fast as possible, since now he is well beyond a "cold." Everyone will go back in 6 weeks...not typical since they have been going every 3 months since they turned 2.

In the rest of our busyness we are back-to-school shopping for next week: Cayden starts 1st grade. He is so excited he is dreaming of recess, snow, and his teacher Mrs. Kotz. Colin will go three times a week to PreK 4 and Trinity starts school for the first time this year in PreK 3. Which means we'll be meeting with teachers and educating them on how to give enzymes before meals and snacks, keep them hydrated, and using the restroom as needed :). Oh, the joys of CF!

Among the Holy Ones

2011-07-25T11:11:00.000-07:00

Our dear friend Connor left this earth on Friday to enjoy forever eternal happiness with His Heavenly Father.

Please pray for our friends Brian and Liz, their family and friends for healing and for peace in such a difficult time of loss.

Our community gathered last night in a candlelight vigil to pray and share stories with one another of how Connor has made our lives more rich by his suffering being offered up in humility. It was simply breathtaking to see all the lives this little boy had touched and brought together into one place.

Our theme was "richness" because Connor always knew how rich he truly was in this life. As we prayed over this theme, this passage from Ephesians came to mind:
Blessed be the God and Father of our Lord Jesus Christ, who has blessed us in Christ with every spiritual blessing in the heavens, as he chose us in him, before the foundation of the world, to be holy and without blemish before him. In love
he destined us for adoption to himself through Jesus Christ, in accord with the favor of his will, for the praise of the glory of his grace that he granted us in the beloved. In him we were also chosen, destined in accord with the purpose of the one who accomplishes all things according to the intention of his will,
so that we might exist for the praise of his glory, we who first hoped in Christ.

In him you also, who have heard the word of truth, the gospel of your salvation, and have believed in him, were sealed with the promised holy Spirit,
Therefore, I, too, hearing of your faith in the Lord Jesus and of your love for all the holy ones,do not cease giving thanks for you, remembering you in my prayers,
that the God of our Lord Jesus Christ, the Father of glory, may give you a spirit of wisdom and revelation resulting in knowledge of him.

May the eyes of (your) hearts be enlightened, that you may know what is the hope that belongs to his call, what are the riches of glory in his inheritance among the holy ones.

As people shared Connor's light with one another many told humorous, yet unforgettable stories of how Connor always saw the best in people, never wanting anyone to be left out or hurting. He was truly a window into heaven.

The last picture Colin had taken with is farmer friend...

We love you Connor and will miss your affectionate smile, your warm brown eyes, and your Guinness Book of World Record reading.

Thank you for always reminding us (every time we visited you) that God has a plan for us and that we will know someday. It brings us great comfort to know that you are counted among the angels and saints praying for us!

Breaking the Bank---and a Solution

2011-07-20T08:40:00.000-07:00

Our kids enzymes have been costing us a fortune. Let's be real here..ALL our CF meds are!

My friend Julie, who did our open house kick-Off fundraiser for CF, introduced to Wildtree and gave me a great way to earn some more money in a very practical way: becoming a rep! It's healthy, all natural and actually VERY GOOD food. And this month it's half the price it normally is!

CONFESSION: I am not a "party" person. I'm not much for things of that sort, never have been and never will be. So this is a big deal for me. What makes me convinced that this product is different is because it is! It's practical. It's something my family will use every day. And it's much better for our bodies!

As a mom, I love Wildtree’s simplicity and convenience. As a caretaker for 3 with special needs, I love the benefit of making extra money. My Wildtree business will help our family support exceeding costs for my children’s CF medications.

All natural cooking products... fast, simple, affordable,
and “wildly” delicious. No food dyes, preservatives, MSG,
trans fats or high fructose corn syrup. The grapeseed oil is the most healthy, amazing oil I have ever cooked with.

Did you know store brand Taco Seasoning has the same material in it that are in those little packets that come in your shoe box that says "do not ingest" on the side??? Gross!

So, while I am selling Wildtree I am helping cut costs of meds that help my kids digest their food better :)

Learn more about this versatile product line at MY WEBSITE

My launch was last night and had a great time sharing a meal with some of my mom friends! If you would like to order and support me you can still order from last night's launch! If you live near me, have it shipped to me (because it'll save you a ton of money). If not, feel free to order and have it shipped direct to your door.

Here's a modest list of my favorite products that I would recommend if it's your first time trying it out:

1. Fettucine Alfredo (just like Olive Garden's...but better for you!)
2. Butter Grape Seed Oil (who doesn't like the taste of BUTTER on, well EVERYTHING!)
3. Carrot Cake (super moist!)
4. Blueberry Pancake Syrup (my kids always ask for this one on their breakfast goodies. It's a delicacy)
5. Scampi Blend (perfect sprinkled on chicken or made as the more traditional pasta dish)

A Little Slice of Reality

2011-07-12T20:01:00.001-07:00

I know you'll be tempted to scroll down and get an explanation for this chart done by Cayden. I urge you to ignore such temptations and pause for a moment to think of what on earth was this little six-year old thinking.

Have you made your guess yet?
If not, consider it now.

I've said it time and time before but it's quite impossible to think of a world outside of CF. For our family living with CF is like eating, breathing, sleeping. It's categorized in survival of the fittest mode.

But it's also an unsaid thing. We don't "talk" about it per say. We just do.

As I scurry to put meals on the table, I distribute pills to 3 children. We run out the door with syringes of daily meds. I rise to pouring Ensure and Pediasure in sippy cups. And at the end of our day just as routine as brushing our teeth and saying our bed time prayers we sit in the living room as a family and watch a movie at the loudest volume. Sometimes we don't hear the phone ring. We are doing nebs and therapy.

Are you still wondering if I'll ever cut to the chase already and get on with the picture? Almost there...

My point is that we don't live in a fantasy land where CF does not exist. It is quite the opposite. We could wake up and say to our selves, "Self, why do we do ALL this. It's not like our kids aren't 'healthy'?" For one, we know that is a ridiculous question. And two, they are healthy...because of hours of treatments and pills before eating.

For me, this picture was a little slice of reality. That in the hustle and bustle of daily living our children still notice the tiny nuances CF has created.

Cayden pointed out to me the first number next to each person is their age.

The second number-how many enzymes they take.

My favorite part of the diagram? That Colin is included. He is no different although in reality he is very different from the rest of his siblings. Cayden sees him as an equal, and although they all realize and understand that Colin does not have CF, he sill is a person. And that is how they are growing up. They are no different than the rest. They my have CF, but it's not who they are. It is a blessing to be the mom of such beautiful, caring children. And sometimes we escape our reality and go about our "daily business" without a cough or ill symptom in sight. Other times we are shaken awake to harsh sounds of wet coughs and crys for help in the bathroom for comfort that it's ok. CF has changed them, yes, but we control how they live with it!

Coping with Your Child's CF

2011-07-06T06:46:00.000-07:00

Great webcast for new parents featuring Ali and Christina from last year's America's Got Talent.

Newly Diagnosed: Real Life Lessons on Coping with CF

I borrowed this question posted by Mandie Sharp (the wife of a man with CF who blogs at "Run Sickboy Run") that she posted in response to this webcast on her CysticLife site:
How about you? How are your thoughts different now about CF than they were when your child was diagnosed?

What are my thoughts on how my view of CF has changed since learning about CF for the first time? So different. We have been through the diagnosis process 3 times now. It definitely didn't get easier with each new diagnosis but I feel so much better now knowing what I have learned about the Foundation and the incredible hope it has for new patients. I am so grateful for the foundation and the great support system we have found. We feel incredibly blessed.

Happy 4th!

2011-07-05T20:36:00.001-07:00

It's Fourth of July weekend! We did some fun things as a family and stayed close to home :)

I finally got around to downloading 218 some pictures from May until this last weekend. So many adorable memories all rolled into one memory disk! But seriously, we are having a blast with this great weather.

Last week we worked on a little art project in the driveway making sidewalk silhouettes of ourselves. They make me giggle every time I see them (since it has yet to rain and wash them away)...

And in my spare time I've been training for 5K runs. It's been a huge accomplishment for me as I am, by no means, a runner. I hate every second of it but I'm very proud of my willpower. It's safe to say that I would have never done it if it wasn't for my training group of ladies to keep me motivated to train day in and day out! We're continuing to train for an 8K in September and a Climb for a Cure for CF in November (1,000 plus stairs straight up...ask me about it if you're interested in doing this with us!!!)

CF and the Summer

2011-06-30T08:06:00.000-07:00

In the time that has past we have celebrated our marathon of birthdays at the Topel House. For some reason ALL our birthdays fall from January-July (and our anniversary is in August) with the exception of March. It's a busy busy time of birthday cakes and parties.

As I took considerable amount of time away from the blog I've been debating on what to post as everything is status quo or as I and only I say "normal." But I've decided that my demise and downshift is for sure the season of summer. It has to be, by far, the most difficult season to have cystic fibrosis. As a Wisconsinite we are advantaged by the long winters and rainy springs to keep us indoors. Therapy is not so big of a deal. It's not so hard to ask your toddler to comply with indoor movies and a round of nebs. On the flip side. Summer.

I work. Come home. The kids want to play in the sprinkler. They want to ride their bikes. They want to take a trip to the park. Or play on the playground in our back yard. They want to go swimming. The list never ends. And so I am constantly finding myself trying to "sway" them back inside. I need to make dinner, start therapy, and if going outside involves sand or dirt give baths, put jams on and at the end of all this fall over and self-indulge in the highlights of the Casey Anthony Trail. What on earth will I do when the trial is all over?

Finding that balance between "everyday normal and average kids" to "you still have CF and it doesn't stop just because it is summer" is a difficult one.

What are some ways we try to overcome this obstacle as a family?
I always begin this battle with a question I ask myself each and every day...how are we going to fit CF into this day? When do we have time to do treatments? And then, I proceed with my ammo of combat:

-The kiddos do their nebs while I cook dinner. Have you heard the saying "kill two birds with one stone?"

-I let them "unwind" first when I get home by playing outside for 30-45 minutes before hitting the machines. By putting a time limit on their outside activities they will still get their treatments in AND have a bit of normal routine in their day.

-I find a different activity that they haven't done in a while and combine it with therapy. Play dough, crayons, painting, the wii. Although these can get a little tricky with vibrating machines!

-FLEXIBILITY! Sure, we have a routine. But every now and then routine is completely thrown out the window. Prime example of how we try to fit CF into our life and not the other way around: We do treatments in between things like at the outdoor movie theater before the movie starts. Or treatments in the morning if we will be gone late at night. Or treatments before t-ball and dinner after. You get the idea.

-And sometimes it just does not happen. If the kids are doing well I am especially unrelenting to not give myself a guilt trip if we occasionally need the "night off." It helps all of us recharge our batteries for the next day. But we never do this two nights in a row. We might just need that little boost of energy for challenges of tomorrow. If you are a CF parent don't let yourself get down. And please don't feel like CF controls your life. Because it doesn't. You control it!

My hope (after the gentle persuasion of our friend Catherine who is undergoing her third stem cell transplant) is to start a Lots-a-helping Hands (a free web-based community site) which allows you to post your needs on a calendar and allow people to sign up to help. I'm thinking this could be a huge help for appointments when Cooper is the only one going in and having someone else play with the other three at home or using it for nights when I have youth group and Chris is alone to fend for himself and 3 kids who need therapy. To help get the kids on their machines or do Cooper's therapy. Or play nights for Colin while we are doing therapy on the other 3. So my goal for the summer months will be to figure out what our family's needs most are and how we can best utilize "lots of helping hands." I know people want to help, but it's very humbling to allow others to take on our responsibility of caring for special needs children. But as I think of the kids getting older and more involved in sports, extracurricular events, homework...CF seems to overwhelm that schedule even more so. Check it out Lots-a-Helping Hands

I Promise to Blog More!

2011-06-15T10:49:00.001-07:00

Blogging has completely slipped off the track...I am so sorry. But we are so healthy, happy, and enjoying summer's return graciously.

And up until last Thursday we have been completely cough free. Cooper's nose is running green goo faster than I can wipe it. He goes back to Dr. Green's for a 6-week check on Friday so fingers crossed that he can kick it by then. If not, it's great timing to check in on his lungs. We've been doing chest pt at our very best 3 times a day for him, but 'tis the season for busy mornings and late nights outside.

Yesterday I gave him 2 puffs of albuterol and his breathing improved dramatically within a few minutes.

Bigger deal than Cooper's cold is that Trinity learned to swallow her enzymes this past Saturday! We can not believe she's doing it already at 3 and so well. I think she's happier now at mealtime because she's a bit more in control. Oh my little independent one, how we love you!

Cayden starts summer school activities next week. This week Colin and Cayden are hanging out at home with a college friend of ours playing outside and doing their swimming lessons with her while I'm at work (how awesome is that?!?). Colin is so much more brave and fearless of the water this year. What a huge difference from last year!

Great Strides has come and gone another year. We left the walk with a little over $13,000 banked for the foundation! Thank you for all your generous donations. We know they truly come from the heart and what is more amazing is that we are still raising tons of money amidst the economy and job loss. We're now onto planning our big celebration of the year: Kickin' for a Cure on September 24th. It seems like a long ways yet to Sept. but trust me, all the work that goes into planning the day catches up with you very quickly! It's truly a labor of love. Check back on the "Kickin' for a Cure" link at the top of my blog page for registration forms and schedules as we work on updating the site.

I promise to check in more frequently and blog weekly (if not bi-weekly) this summer.

Untitled

2011-05-09T21:12:00.001-07:00

“It's not hard to find the truth. What is hard is not to run away from it once you have found it.”

How do I give this post a title. It's a tough one to even imagine to write. And yet I am. Because this is what CF has done to our family.

It was a conversation I had played over in my mind at least a dozen times. Hoping and praying it would be in, let's say 15 years or so. But it didn't. It happened much sooner than I expected it to.

On our family vacation to the Outerbanks of NC (which is a fabulous family destination if you're ever in the market for one!) Cayden told my mom he knew something about CF. Something he hadn't been told. Rather, he just quote...'figured it out." He told my mom, his beautiful Nana that he was going to die from CF. If they don't find a cure soon.

Goosebumps lined my skin. My mind was blurting in fragments. "But, I...didn't...even...get...a...chance to..........explain."

Our year has been plagued by pain and unfortunately, untimely death. Daddy talked to Cayden more when they were alone and when I asked Cayden what they talked about he told me exactly as it was described. He would die from CF someday. I am swallowing my heart. I can't breathe. "Who told you that...was it something we said?" No. "I just figured it out."

As I choked back tears I asked him "What did daddy say about that?"

Cayden answered, "I don't need to worry about that right now. God will take me when he is ready. And I will be in heaven with Treyton."

This is the truth. We can not run from it. We can not hide it. It is the honest truth. The ugly truth about this disease.

I'll take Cayden's response to heart though. We don't need to worry. God will take care of us!

More Birthday Candles

2011-04-26T12:33:00.000-07:00

It's Cooper's birthday today.

Could you give him the BESTEST birthday present in the world? Can you give him the
gift of LIFE? And make a small contribution in his name to CF? It would
mean the world to share more than 38 birthdays with him...we love him
so very much. God bless you :)

More Birthday Candles

Days turn into Years

2011-04-25T18:53:00.000-07:00

Enjoy some handsome (plus one gorgeous picture) of the kiddos at Easter.

355 days of bliss. All turning into one year tomorrow. Happy Birthday to my sweet, sweet Bubba!

Good Friday

2011-04-22T09:40:00.000-07:00

When my kiddos were little (ha...and they still are) we started the tradition of remembering Good Friday by coloring the Stations of the Cross and then putting them all around the house in a sort of scavenger hunt fashion. Once they are done were pray and "look" for the Stations in order.

Get the coloring page template from catholicmom.com

This year we ended up more numerical thanks to having a kindergartner in our house :)

If you give a pig a pancake...

2011-04-14T14:49:00.001-07:00

...he'll ask for syrup to go with it.

Cayden brought this book home from his school library a few weeks ago. What a great segue to our next fundraiser for CF in Fennimore this weekend. If you're up for a drive (or if you live in a relatively close proximity) consider joining us for our 6th year of

Flipping flap jacks

Sizzling sausages

And O-Ding on cheese curds for a benefit full of silent auction items included Brewer Tickets, camp ground certificates, and the list goes on and on!

Last year we raised just over $6,000 for the Foundation. We are hoping to do better this year!

On a side note Cooper had a great clinic visit yesterday, just shy of hitting 24 lbs (only 4 lbs lighter than Trinity!) We saw an N.P. because of difficulty in scheduling and she, like I, agreed that Cooper is still having some major malabsorption because of the quality and quantity he is still having in bowel movements a day despite his positive weight gain.

After brainstorming some possible avenues to pursue our plan going forward in the next 6 weeks before our next clinic visit was to reduce his caloric intake by decreasing Pediasure shakes from 2-3 a day to 1-2 a day. Since Cooper will be 1 soon (way too soon even for ME!?!) he will be switching to whole milk which may help some also. If that does not make a difference, the second step will be to increase his omemprozale (acid reducer) dosage.

It's that time

2011-04-12T16:29:00.000-07:00

Tomorrow Cooper goes to clinic for his six week appointment. It's so unusual to be actually looking 'forward' to a CF clinic visit.

But this time, something tells me Cooper is going to rock his weigh-ins. He is getting more solid by the second, I swear!

Tonight, please say an extra prayer for our dear friends the Bourke family. Their almost 12 year old son is facing rough days ahead in his battle with brain cancer.

Come Walk

2011-04-11T12:35:00.000-07:00

Looking for a creative way to pray the Stations of the Cross this Lent?

I was doing some Youtube searching for Holy Week and came across these great youtube videos.

For the stations that I couldn't find a media version I'll be reading the meditations from Lifeteen's "Come Walk": Teen Guide to the Stations of the Cross," but you can use any mediation book!

The Stations of the Cross are an invitation into the heart of God.

We adore you, O Christ, and we praise You...

Because my your holy Cross, you have redeemed the world.

Opening
Station 1
2
3 Jesus Falls the first time
4
5
6
7 Jesus falls the second time
8
9 Jesus falls the third time
10 and 11
12 Jesus Dies on the Cross
13
14 Jesus is laid in the tomb

Pink

2011-04-06T20:58:00.000-07:00

What is more crazy than having 3 kids in a house of 6 with CF?
3 bottles of pink amoxicillin and a mommy on augmentin!

Cayden started complaining of a sore throat today so I wanted to have ALL of us (excluding Cooper) checked out. Everyone, including me, have been hacking the worst of coughs for upwards of a week. Line em up...one, two, three, four.

You would have thought an army or a herd of cows or a flock of geese were coming in to the clinic this afternoon. I love doctor's offices who are patient and treat you like family. Who hold your baby so you can take off your toddler's coat. Who carry your diaper bag from the waiting room to the room. They are my heroes!

Now we just all need to get a little healthy. A long deserved beach house awaits us.

This is my thought for the day: Sometimes I feel more than equipped. And sometimes less. I guess that's God's way of keeping me to completely rely on Him!

Invisible Mother

2011-04-06T08:37:00.001-07:00

Do you ever feel invisible. I know I do. Especially after a long day at work, scurrying to throw something together for dinner before my ravenous children eat me alive. After spending hours on treatment. While being kicked as I hold down, yet for another night, a screaming toddler as I hold one hand on a neb and the other over their arms so they won't remove their mask. If you ever feel like me, this is for you. Thanks to my friend Tiffany for sharing with me today. I needed it this morning...

The Invisible Mother

It all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I'm on the phone and ask to be taken to the store. Inside I'm thinking, 'Can't you see I'm on the phone?'

Obviously not; no one can see if I'm on the phone, or cooking, or sweeping the floor, or even standing on my head in the corner, because no one can see me at all. I'm invisible. The invisible Mom. Some days I am only a pair of hands, nothing more! Can you fix this? Can you tie this? Can you open this??

Some days I'm not a pair of hands; I'm not even a human being. I'm a clock to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is the Disney Channel?' I'm a car to order, 'Right around 5:30, please.'

Some days I'm a crystal ball; 'Where's my other sock?, Where's my phone?, What's for dinner?'

I was certain that these were the hands that once held books and the eyes that studied history, music and literature -but now, they had disappeared into the peanut butter, never to be seen again. She's going, she's going, she's gone!

One night, a group of us were having dinner, celebrating the return of a friend from England . She had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in. I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself. I was feeling pretty pathetic, when she turned to me with a beautifully wrapped package, and said, 'I brought you this.' It was a book on the great cathedrals of Europe. I wasn't exactly sure why she'd given it to me until I read her inscription: 'With admiration for the greatness of what you are building when no one sees.'

In the days ahead I would read - no, devour - the book. And I would discover what would become for me, four life-changing truths, after which I could pattern my work: 1) No one can say who built the great cathedrals - we have no record of their names. 2) These builders gave their whole lives for a work they would never see finished. 3) They made great sacrifices and expected no credit. 4) The passion of their building was fueled by their faith that the eyes of God saw everything.

A story of legend in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, 'Why are you spending so much time carving that bird into a beam that will be covered by the roof, No one will ever see it And the workman replied, 'Because God sees.'

I closed the book, feeling the missing piece fall into place. It was Almost as if I heard God whispering to me, 'I see you. I see the sacrifices you make every day, even when no one around you does.

No act of kindness you've done, no sequin you've sewn on, no cupcake you've baked, no Cub Scout meeting, no last minute errand is too small for me to notice and smile over. You are building a great cathedral, but you can't see right now what it will become.

I keep the right perspective when I see myself as a great builder. As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on. The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree.

When I really think about it, I don't want my son to tell the friend he's bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the morning and bakes homemade pies, and then she hand bastes a turkey for 3 hours and presses all the linens for the table.' That would mean I'd built a monument to myself. I just want him to want to come home. And then, if there is anything more to say to his friend, he'd say, 'You're gonna love it there...'

As mothers, we are building great cathedrals. We cannot be seen if we're doing it right. And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible mothers.

Share this with all the Invisible Moms you know... I just did.

The Will of God will never take you where the Grace of God will not protect you.

To all the wonderful mothers out there!! God bless and keep you.

65 Roses

2011-04-05T11:17:00.000-07:00

Right now, the Topel Household is in full-mode CF fund raising. Sometimes it gets overwhelming. Most of the time it's so emotional.

Especially our fundraiser, 65 Roses for Cayden, Trinity, and Cooper.

We started this fundraiser 5 years ago.

Why the 65 roses? I love this story.

You want to know how God works in miraculous and unforeseen ways? My mom's first cousin owns a flower shop. He's such a providential God! She has donated each year 200-500 roses so that we could make tons of money for CF.

This year we showed our montage before Mass was over and sold roses after 4 Masses at our parish in Jefferson. We shared how much hope we still have in a cure so very soon. We aren't wealthy. We don't have special talents. We simply love our children. We have big hearts and a big dream of defeating CF. That's all.

We sold all but 4 roses. And we raised.....

$3,520!

All for the CF FOUNDATION!
It was such a huge blessing. We have the most wonderful and loving friends.

Unbelievable.

This is what love looks like...65 roses for CF!

Can you spot our family?

2011-04-04T11:58:00.001-07:00

Media and Youth Ministry

2011-04-04T11:42:00.001-07:00

This past Sunday, our Theology of the Body mini-series was on Media and the Challenges and Choices teens must face in light of it. We did a little small group activity that created some really great discussion from the teens on the talk.

Puzzle Competition Relay. On one side of the room are 6 piles of pieces to completing a puzzle. Each picture is some form of media that we use. Each group will send one person to run to the other side, grab a puzzle piece. When they have returned the next person in line will go until all the pieces have been returned to the group. The first team to put together their puzzle the fastest, wins!

I found the link to making a poster out of any picture at Prepared Catholic.com

Block Posters

This would also be a great idea for themed parties or to make a giant poster for a kid's birthday party!

These were the images I used:

Once teams put together their poster, they discussed in their small group:
1) Do you use this form of media? Why or why not?
2) From Teresa’s talk what challenges does this form of media present in your life?
3) What things could you do differently to manage the time you spend with this media?
4) What is your relationship with God and prayer like in comparison?
5) How could you resolve to change that?
Share with one another one thing you can take away after hearing tonight’s talk.

Joy of Suffering

2011-04-04T11:40:00.000-07:00

A beautiful reflection for Lent: Joy of Suffering

Open House=HUGE SUCCESS!

2011-03-26T15:53:00.000-07:00

Our first open house/kick off went so well.

-30 people were served!
-2 new walkers registered
-4 bookings were set up for tastings
-$1,149 in products were purchased
I was impressed with the turn out. The good food. The money we made for CF while enjoying all the above (note to self: ~$200!!!!) A huge success!!!!!

Check out the picks from Wild for a Cure HERE.

We also shared with our supporters this year's t-shirt design made by one of our parish's very own alum, Jade Ashburn.

Jade is incredibly talented and created a design that captures it all!

We decided the shirt color should be Irish Green in the theme of the clover image and donning a Topel Family pic on the back.

Cost is $10 for adults, $7 for youth sizes ($1 from each shirt will go towards our fundraiser:))!
You can order one even if you can't walk.
I will be putting in our first order this week Wednesday.

Something Beautiful

2011-03-24T19:44:00.001-07:00

The theme of our Confirmation retreat this year was "Something Beautiful" based on the song by Need to Breathe.

We got home on Saturday night. My sister had lent me some of her large glass cylinder vases for a retreat a few months back and I had finally gotten around to parting with them. But while I was packing them up, I heard glass shatter. No! I thought. How could I be so careless. I felt terrible knowing I had broken something someone had given me to borrow. But I've also learned to not sweat the small stuff especially when it comes to having 4 small children and a dog in the house. The crazy thing is that I decided not to take it out until that specific moment. Why? I was unsure until I saw that God had desired for me to see it at the certain moment in all eternity.

I picked up the broken glass to toss it out. When I turned it around I saw this...

A complete and beautiful heart. I'm not sure why God chose to make Himself known in such a way. But I do know that only God is capable of such perfection. Such intricate detail. And only God could do that. Something beautiful for sure.

Oli and Nush

2011-03-16T12:30:00.000-07:00

Cute kid CF video. And I love the British accents.

April PowerHouse

2011-03-16T11:58:00.000-07:00

I must say, I'm really excited for this coming month's youth group line-up. The Holy Spirit did a really nice job!

This Is What We’ll Do in April.

Eye of the Needle. I have no idea why it’s called this. There isn’t even a needle involved. Oh, wait. Yes I do. This team building activity involves a hula-hoop balloons and people passing through the “Eye of the Needle”. All in relation to the rich young man.

Improv Skits. We’ll give you the theme of Lent. We’ll also give you 3 random lines you must use at some point in your skit. You’ll give us the laughs!

Coke Relays. What does a Coke can, a group of middle-schoolers, and a parking lot all have in common? Come to Coke Relay night to find out!

Dinner & a Movie Night: “Henry Poole Is Here”

Scheduling, Schmeduling

2011-03-14T20:17:00.000-07:00

Today I scheduled the kiddos follow-up appointments. Cooper needs to be seen in 2 weeks.

"When does he need to be seen?" I tell the receptionist "6 weeks from his last appointment on Feb. 18th." She responds with my least fav. answer-the next available time to see Dr. Green is...

Wait for it....
Wait for it...

"May." I stop listening. I have no idea what she said after the month. It really was not the answer I hoped for. So I ask to be put on the "call list" referring to our Dr.'s nursing staff to give me a call and to squeeze in an extra clinic day so that we can be seen in 6 weeks. And yes, I know it's my fault. I should have made the appointment the last time before we left clinic. But really after 3 hours of seeing the same paint color and playing referee to 4 kiddos 5 and under who just can not understand why blue medical clothes are on the wall for a purpose other than to be played with, I just wanted to get out of dodge! As soon as we leave we start all over again.

When was the last time you visited a doctor or had to be on a waiting list for that long? We've been going to the doctor more than you care to know.

Try scheduling 3 kids for 3 appointments. At the same time. Yep, it's pretty much a nightmare.

550 hours

2011-03-08T09:18:00.000-08:00

We plan our day events around CF treatments. They usually take us an hour and a half from start to finish. Add that up, we spend an average of 550 hours/year on therapy alone (and this is just when they are HEALTHY!) Yikes!

I would rather spend my 550 hours...
Drinking lattes
Playing with my kids
Taking long walks
Going on camping trips or vacations
Volunteering for CF
Teach piano lessons
Going on date nights with my hubby
Movie nights
praying :)
Tackling do-to lists
Shopping :)
Learn how to play the guitar
Reading
Exercising
Writing a book
Horseback riding
Learn how to barrel race
Sleeping
Getting all dressed up for no reason in particular
Raising money for CF
Organizing my life! Ha!
Writing a handwritten note to someone I care deeply about
Visiting the sick
Making a meal for those who can not
Spending time with loved ones
Driving my kids to practice, swim lessons, and fun events

I could probably think of a thousand different ways to spend 550 hours a year. But CF has chosen us to spend those hours with. What would you do with an extra 550 hours a year?

“Life is not measured by the number of breaths we take, but by the moments that take our breath away”

“When I hear somebody sigh, "Life is hard," I am always tempted to ask, "Compared to what?" -Sydney J. Harris quotes

A Bucket List

2011-03-06T19:32:00.000-08:00

This past Thursday my grandpa died. It was definitely unexpected, but he had been suffering with dementia for the last 8 years. I thought I would share some of my "bucket list" items with you. You know, those things you have to accomplish before this life it over.

-Tour Europe (to include ROME, THE VATICAN, PARIS)
-See CF cured :)
-Ride horses on the beach (I can officially cross this off my list in April!)
-Hot air balloon ride
-Ride a book for new parents of CF kiddos

And until that book comes out, you'll just have to keep reading my blog posts :) They'll have to do for now.

Sleep with the angels-Tiffany

A 4 Year-Olds Prayer Intentions

2011-03-06T08:17:00.001-08:00

Last night (as we do most all nights) I asked Colin and Trinity who we should pray for.

These were Colin's prayer intentions/requests (in order...)
+For all the kids in the world who have CF like Cayden, Trinny and Cooper. So they don't have to do all that "stuff."
+For Connor so he doesn't have to get fed by that tube (he meant his feeding tube) and so he will feel better.
+For Catherine Tackman who has the same thing Connor has.
+For Treyton.
+For Grandpa M & M (my grandpa who just passed away Thursday night. They call my grandparents "M & M" because they always bring a package of their favorite candy when they visit).

And I added a prayer intention of my own. For all the kids like you Colin who live with kids that have CF.

What a sweetie!

My Opinion

2011-03-03T18:45:00.000-08:00

Do you want to know my opinion on the hardest part of being a CF mama?

It isn't finding out the life span for a person with CF is just 38 years old.
It isn't learning how to give a baby enzymes before each feeding.
It isn't all the stats and emotions you are flooded with.
There were a lot of things going through my head that day Cayden was diagnosed but really and truly the hardest part of learning he had CF was when the doctor said "males are sterile."

What a really crummy side effect from a disease. He is just a BABY! How could he already be sterile. In the week before his sweat test that thought had never even entered my mind. As I scowered the internet to see what ethnicity backgrounds traced their roots to CF, how old patients lived, what it did to there life. I missed it. Completely missed sterilization.

Immediately the questions and thoughts had changed. I won't ever know the joy of being a grandmother. How terribly helpless I felt holding a 3 week old that I would one day have to tell would not be able to naturally produce children of is own.

In my mind's eye I saw his future girlfriends. Would anyone want to marry him? How devastating to fall in love with someone and then have to tell them such a life sentence.

My heart was broken.

It's definitely not the thought that hovers over me from day to day. Sometimes I forget about that. And then someone asks what long-term effects there will be. And I remember again. Like its the first time. CF just isn't fair. I wish it would have asked me my opinion first.

Our Story

2011-03-03T18:22:00.000-08:00

We are like any typical American family.

We both work outside of the home. Me as a youth minister for our Catholic Church and my husband as a carpenter. We have a house, a dog named Emma, and oh yeah, some kids.
Only 3 of our 4 kids have a genetic disease-cystic fibrosis (CF). So double all our responsibilities by three. When our oldest son Cayden was diagnosed @ 3 weeks old we knew virtually nothing to very little about CF. We had no idea what an amazing adventure awaited us, but we knew that we couldn't just simply watch from the sidelines while our kids fought the fight of their lives. But with the amazing blessing of good friends and great family we have been able to help our children-Cayden, Trinity and Cooper fight the disease. That's where the CF Foundation comes in.

We don't just raise money in hopes of finding a cure. Don't get me wrong, that's a REALLY big part of it though. We do what we do so other families know what CF is. 10 million Americans are unknowing symptomless carriers of this recessive disease. It can happen to anyone. At anytime. Our motivation for raising money is for future families. To have more hope then we did 5 years ago. To know what CF is and the great potential the future holds. We truly believe a cure is possible.

Some days are great (and they by far outweigh) the bad days. But there are those not-so-great clinic visits when you, at any given second, could hear the "H" word (hospital). Weight gain might be down, or sputum culture results are positive for some unpronounceable bacteria you have never even heard of. There are the nights when the thick mucus has laid dormant for two long and Cayden or Trinity will wake us up in the night coughing. Coughing so hard you pray it stops. It breaks our hearts.

Meal times are mass chaos. Chris and I find ourselves in an assembly line of opening enzymes. Different doses for different kids. Dozens of medications, hours of therapy and nebulizers just to maintain a "healthy" lifestyle.

This is CF.
CF creates digestive problems.
CF creates breathing problems.
CF creates organ problems.
CF creates bodily infections.
CF wreaks havoc on every cell, by INTERFERING with a critical bodily protein from working to properly balance (in the most basic terms) salt and water in the body.

But it is also being called "the medical miracle of the 21st Century." Thank you for being here and being a part of something great. And while I strive to blog weekly it doesn't always happen.

This blog is not a debate or an open forum for criticism or passing judgment. There will be no hatred here. 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.

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!!!!!

Enjoy this journey as we learn what it means to share LOVE!

The Big 3

2011-03-01T19:35:00.001-08:00

Have you gotten over to our Great Strides Site yet? If not, I hope you'll plan to visit very very soon and sign up to walk with the TOPEL TRIO this year or maybe raise some money for the cause, or even make your own donation.

A friend from high school facebook messaged me this past weekend after seeing a Grey's episode with two CF patients in a relationship. She said, "I heard that people who have CF are not supposed to get within 3 feet of each other, is that true? If it is true, how does that affect your kids?"

My response: Yes it is true :( Because of cross-contamination. Obviously in our house it's a rule that kind of goes out the window for practicality sake. We're even not suppose to do treatments in the same room (but again, practically speaking it's not feasible). Every time they go to clinic they have to wear a mask when they are in the elevator or main areas. We meet with kiddos with CF on occasion, but as a good rule of thumb we only do it if they are healthy and not culturing any funky bacterias that could be passed to someone else.

Back in the day (like the 90s when you and I were in grade school) they had camps for CF kids but soon realized that it was not a good idea to breed all the nasty bacteria together. More dangerous strains of bacterias have also resulted from cross contamination. And again it def. depends on the person. Some people are more comfortable than others and I for one truly believe it is beneficial for our kids to meet others with CF so they don't feel so isolated, but it def. has to out weigh the risks. I do know that the internet has been an unbelievable way for adult with CF to connect with one another. This spring we met a pair of twins with CF and one of them had a lung transplant a few years ago but because she needed to be so concerned with germs and sickness she could not shake hands with anyone there. Also when our clinic puts on education days CF patients are not allowed to attend. People with CF can go to the walks but they cannot have a culture of a really long bacteria that I can hardly pronounce (it's basically bad because it is resistant to almost all types of antibiotics).

Quote to live by.

2011-02-28T06:33:00.000-08:00

It's not the load that breaks you down, it's the way you carry it. -Lena Horne

I Won't Let Go

2011-02-23T12:36:00.000-08:00

2011 Great Strides Montage is finished!

I love my family :)

Make an on-line slide show at www.OneTrueMedia.com

Humbled.

2011-02-22T09:24:00.000-08:00

As I sit here finding a spare moment in my crazy, hectic pace of a life I keep to update my blog readers on the kiddos appointment last Friday, I am

HUMBLED.

I am sitting in Chicago's Children Memorial Hospital with the Bourke family as Connor gets his treatment drug. Connor is 10 (almost 11). And he has an inoperable brain tumor. Suddenly life with three kids with CF is a piece of cake. It is nothing in comparison to what my friend Liz has to see and live each and every day.

Our appointment on Friday was awesome!

Cayden-gained 2 lbs.
Cooper-went from the 20th percentile for weight to the 60th. We are now "cutting back" on his high-calorie formula. He weighs 22 lbs!
Trinity-gained 1 lb but is falling off the growth chart so we are adding Ensure shakes to her diet and playing with the Mirolax to find some more balance in her stooling.

I always ask Colin if he wants to come along to clinics with the three of them or go to a friends house for a play date. This time he wanted to go along. I asked him who should Dr. Green see first. He said "I think Dr. Green should see me first mom." So he did. Listened to Colin's lungs and talked to him about his health. So sweet.

Coming Out of Hibernation

2011-02-12T11:30:00.001-08:00

It takes a little while for me to be re motivated to raise money for CF. But with February almost half-way over I am slow to come out of fund raising hibernation which takes place each year from the finishing up of our kickball tournament to anywhere between February and March.

I have the next few weekends pretty free so I decided to make a big hit on my to-do list and accomplish our friend and family campaign letter for 2011. Keep a look out for a new montage :)

Dear Family & Friends-
Here we are! We are blessed to be able to share another great year with you! Cayden and Trinity had a very healthy year. Just a minor pseudomonas culture for Trinity and MRSA for Cayden, but NO hospital stays. It was Trinity’s first experience with the nebulizer drug TOBI. Trinity also blew out 2 candles on her birthday cake making her eligible for a vest. We can’t even begin to think about what life was like without it! Trinity finished a study just a month ago for safety of hypertonic saline in infants. We learned that studies with kiddos can be extremely difficult, long (48 weeks) and not to mention time-consuming. But we know it was also very worthwhile in advancing treatments for CF! Cayden started kindergarten in the fall…we can hardly believe it. We again met with his teachers to talk “CF” and they have adjusted very well to having him in class and giving him enzymes each day. We are blessed by our school family’s unbelievable support! Colin started PreK 3 and started new adventures of his own. It has been an awesome opportunity for him to break out of his shell and spread his wings apart from his big brother.

And now we come to April 26th. Cooper Joseph was welcomed into our family at a healthy 9 lbs 3 oz. It was a great day! And then on April 28th just hours from leaving the hospital to return to our anxious children our entire world would change again. Forever. He had meconium illeus (a blocked stool) which made him unable to have a bowel movement. And since it happens in 30% of CF births the doctors were certain, given our genetic background, that he also would be diagnosed with CF. After 7 long days in the NICU he was able to pass the bowel on his own without surgery, something we would later find out to be very rare among CF patients. Then at six weeks I noticed Cooper having difficulty breathing and a wheezy sound coming from his chest. After he started throwing up and not wanting to eat I took him to the ER at the UW-Children’s Hospital in Madison where he was admitted for low blood oxygen levels. After maintaining near 100% for 2 days and no sign of pneumonia we returned home and continued enjoying the holiday weekend. After days of frustration had not getting him to eat and once again spitting up every ounce he ate we took him back to the ER on Memorial Day. This time the x-ray showed pneumonia in his right lower lobe. He would be hospitalized for ten days. As we prepared to take him home we couldn’t help but be overwhelmed by dozens of medications, clinic appointments, hours of chest therapy and nebulizer treatments that awaited us.

We never thought we would be asked to care for 4 children-3 of which have cystic fibrosis, but we are learning every day how to cope with it better. This past November we had the honor of meeting the CEO of the Cystic Fibrosis Foundation, Dr. Bob Beall. He assured us of the good things coming in the near future because of our hard work fundraising and told us never had he been surer of a cure than now. And while our year was filled with many lows we also celebrated some great highs. Our kickball tournament raised a record $10,000 with almost twice the amount of teams and spectators. Amidst the adversity of a difficult economy we raised just shy of $27,000.

Let this be our personal invite to you. To help us make certain the drugs that Dr. Beall is so hopeful about curing CF will come to be available in the very near future.

There are so many ways you can support our team.
1. If you would like to help financially and make a donation to our team “Topel Trio”, please send a check payable to the “Cystic Fibrosis Foundation” to Tiffany & Chris Topel, 123 S. High Avenue, Jefferson WI 53549. Or visit our Great Strides webpage: http://www.cff.org/Great_Strides/TiffanyTopel5250 to make an online donation and watch our 2011 montage. Our pancake breakfast and rose sale in Fennimore will take place on Sunday, April 17th. Our rose sale in Jefferson will take place sometime in April. Mark your calendars to join us on Saturday, September 24th for our 4th annual “Kickin’ for a Cure” in Fort Atkinson.
2. Share our family’s story/this letter to someone you know who might be interested in helping us raise money for the Cystic Fibrosis Foundation. We also blog weekly to update on our kids’ health @ www.youthministermom.blogspot.com
3. Walk with us! Join our family on May 22nd at Elver Park in Madison. Don’t live near Madison? Great Strides also happens around the country so you can walk anywhere! Send us an e-mail and we would be glad to help you connect with a walk or to join our team.
4. Lift our family up spiritually. Even if you can not financially support us, please know that we appreciate and are grateful for all the love and prayers we receive. It means so much to us and gives us the strength to continue fighting each and every day. It is one of the greatest gifts of support you can offer.
5. Learn more. On Friday, March 25th @ 6 pm our family will be hosting “Wild about a Cure for CF” open house (at our home: 123 S. High, Jefferson) kick off party for our 2011 fund raising complete with a Wildtree food tasting (rep: Julie Endl) and CFF staff on hand to answer questions and get us motivated for fund raising. Please RSVP by March 20th to Tiffany by phone or email. As a bonus for coming, 10% of all sales will be donated towards our efforts and raised for CF!

While our name has team name has changed over the years (three times to be exact!), you can be sure that we will never stop raising money for a cure and that the foundation will be putting every dollar you donate or raise directly to research. We can never thank you enough for your support. We are incredibly blessed by amazing family, community, and friends. And without you we couldn’t do all we are for the CF Foundation. We pray that your family will be blessed this year as well. Thanks for being the cure!

With Love, Chris, Tiffany, Cayden, Colin, Trinity & Cooper Topel
E-mail: tippy_topel@hotmail.com

Wordless Wednesday revealed.

2011-02-09T19:54:00.001-08:00

I know. I posted a Wordless Wednesday on a Tuesday. I couldn't help myself.

Drum roll please.......

I had so many meds to pick up last week it called for a large paper bag. Let's break this down...

Layer 1

Layer 2
Yup! You saw right...there's 3 layers!

And this is just enzymes and pulmozyme.

Just in case you ever wondered what picking up meds for three CF kids looks like. Now you know.

Wordless Wednesday

2011-02-08T18:05:00.000-08:00

Any ideas...what's in the bag?!?

Salt&Light

2011-02-07T19:03:00.000-08:00

Cayden lost his first tooth!

Great story, no joke. He lost it at the dentist.

Literally.

After they put on the fluoride he spit out water and the next thing I knew he was bleeding and screaming "My tooth is gone." And he was right. We never found his tooth.

I spent this past weekend with 15 amazing high schoolers and 2 adults for Resurrection Rally 2011 in the Dells learning about how we can be better light and better salt.

Adoration

Some might say I'm crazy to love being with teenagers. But they make me appreciate coming home to toddlers who go to bed way before 1 am!

Moments like these make me love being a mommy! Cooper and his new trick.

And oh yeah, nice guys do finish first! Go Packers.

I'm Not Alone

2011-02-01T11:26:00.000-08:00

Follow this link to read a story that is nearly impossible to believe. And it was published in a Catholic magazine just this past month!

It's so comforting to know I am not alone in my walk to the Cross.

Peace-Tiff

He Weighs What?!?

2011-01-29T11:33:00.001-08:00

That was exactly my reaction as I did a double blink at the numbers on the scales staring back at me.

Cooper weighs 20 lbs 7 oz. Finally all the hard work paid off!

We are so thrilled to have him above the 50th percentile for the first time!

And, he's no short cookie either. At 30 inches Cooper is also in the 75th percentile for height.

At nine months old my baby is growing up fast! Major accomplishment of this month has been mastering sitting up all by himself. He's on all fours and getting ready for crawling...look out!

I love this kid...

So serious.

Whoa! A little too close.

Finally a big grin.

Both dimples showing.

Chosen Mothers

2011-01-27T11:00:00.000-08:00

Mothers of children, even if they have a thousand, carry each and every one fixed on their hearts, and because of the strength of their love they do not forget any of them. In fact, it seems that the more children they have the more their love and care for each one is increased. St. Angela Merici (Patron Saint of Disabled Persons)

Praying for all the "Chosen Mothers" in my life:
Liz (10 year old son Connor with inoperable brain cancer)

Mary (6 year old son Treyton lost to a drunk-driver)

Catherine (adoptive mother of 4, also battling cancer).

And the still countless others I have met who care for children with cystic fibrosis.

It helps to make sense out of the senseless.
To find hope in the despair.
That I am a Chosen Mother.

I see the King of Glory coming on the clouds with fire.

The Chosen Mothers by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy." "Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side."

"And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."

The "P" Word

2011-01-21T20:49:00.000-08:00

This blog is all about the "P" word. Yes, poop.
Confession: I never thought I would have to call the doctor to ask for a laxative---for one of my CF kids!

The "P" word is a pretty common topic of interest in any CF family's vocabulary. This is what CF is all about!

It's true. Trinity has been constipated and having trouble passing the hard stools. I assumed it happens for the same reason they have greasy loose stools and malabsorption. Occasionally the gut becomes completely blocked, resulting in extreme stomach pain.

It's definitely a really good thing to have formed stools. It's just something you never expect in our house! But she's been complaining more and more lately that she's in pain which makes potty-training (which she has NO interest in what-so-ever) even more difficult. The doctor called in a prescription for mirolax to see if we have any improvement.

Continue On

2011-01-18T09:19:00.000-08:00

No news to share. No challenges to post. Everyone is basking in baseline weather at our house. Next clinic visit for all three is on February 18th! Colin turns 4 on Thursday! So very hard to believe. He had a weekend all to himself with mom and dad. It is strange to think how different his life would be without his three siblings.

Sitting on my dresser I keep this saying near by. So when the mundane sets in, I will see it and remember to continue on.

Continue On

Written by I. Brown

A woman once fretted over the usefulness of her life. She feared she was wasting her potential being a devoted wife and mother. She wondered if the time and energy she invested in her husband and children would make a difference. At times she got discouraged because so much of what she did seemed to go unnoticed and unappreciated. "Is it worth it?" she often wondered. "Is there something better that I could be doing with my time?"

It was during these moments of questioning that she heard the still, small voice of her heavenly Father speak to her heart:

"You are a wife and mother because that is what I have called you to be. Much of what you do is hidden from the public eye. But I notice. Most of what you give is done without remuneration. But I am your reward. Your husband cannot be the man I have called him to be without your support. Your influence upon him is greater than you think and more powerful than you will ever know. I bless him through your service and honor him through your love. Your children are precious to Me--even more precious than they are to you. I have entrusted them to your care to raise for Me.

"What you invest in them is an offering to Me.

"You may never be in the public spotlight. But your obedience shines as a bright light before Me.

"Continue on."

Show your Support!

2011-01-06T19:00:00.000-08:00

If you have been voting for the CF's Pepsi Refresh grant idea thank you! Continue to vote daily through January 31st by CLICK HERE TO VOTE FOR CF Each month Pepsi Refresh Grant Awards 2 $250,000 grants for the 2 ideas with the most votes.

I am asking the CF community to please also show your support for another cause that is very near and dear to our hearts.

Treyton's family (our school principal's 6 year old son who's life was taken by a drunk driver this past Sept) has a wonderful opportunity to be awarded the $250,000 grant money for the building of a baseball diamond in his honor! CLICK HERE TO VOTE FOR TREYTON'S FIELD OF DREAMS

You can vote 3 ways each day:
Facebook
Email
and Text

CysticLife Rocks My Face Off!

2011-01-05T11:54:00.000-08:00

I love CysticLife (the social network for cystic fibrosis).

Check out these fab resources and reading materials if CF is new to your vocab or you're a veteran!!

Information Flyer

This is my favorite: Booklet for Newly Diagnosed
I think it should be available at all CF care centers.

A Snack Guide for adding Calories (I might use this for my own dieting purposes!)

Go check out CysticLife today!

Christ Bless This Home

2011-01-04T19:31:00.000-08:00

Happy New Year!

20+C+M+B+11
On the evening before Three Kings, traditionally there
were prayers, blessed dried herbs would be burnt and
their aromatic smell would fill the house. Doorways
would be sprinkled with holy water and the master of
the house would write with chalk C + M + B and the
year above the house and barn door and say: "Caspar,
Melchior, Balthasar, behütet uns auch für dieses Jahr,
vor Feuer und vor Wassergefahr." ("CMB, protect us
again this year from the dangers of fire and water.") C +
M + B has traditionally been translated with Caspar,
Melchior and Balthasar, however, according to the
Church it stands for "Christus Mansionem
Benedictat" (Christ bless this home).

We have been keeping busy with spending time with our families for Christmas, ringing in the New Year, baking new treats and dishes, and staying healthy.

Here's an extremely cute story to share: This past week our nieces and nephews came over for a movie night and play time with the kids. My 4 year old niece asked me "Aunt Tiffany, why is Colin the only one in your family that doesn't have to do therapy." It's amazing what details they notice.

ALL THE KIDS ARE BACK TO BASELINE with a minor exception of Cayden who is extremely close. A great way to start 2011.

Some bad news to start the new year: a Phase-3 study drug Denufusol did not show promising results. Read the CF Foundation's press release here.

It's a pretty big deal. Just two weeks ago at Cooper's appointment Dr. Green was talking about the possibility that if all went "as planned" for this drug it could be available in 2011 and could be an option for treatment. But there's still hope for the more than 30 other drugs in the pipeline. And that's why I'm so grateful to have the CF Foundation doing all the wonderful work they are in bringing new and innovative therapies to the pipeline constantly in the instance that one, like Denufusol doesn't pan out.

Cayden, Trinity and Cooper all return for check-ups in about 3 weeks. And we will FINALLY turn in Trinity's hyper tonic saline study after 48 grueling weeks. We'll have to celebrate that day for sure.

I know it's a tradition to look back at the close of the past year and reflect, but this year has been undoubtedly a roller coaster of ups and downs, twists and turns. So much that I feel like I haven't even gotten settled in the seat. I hate roller coasters. But I will say what amazing growth has taken place for me in just the past 8 months. 8 months ago I had no idea where the journey would lead our family.

This picture was taken a day before my entire world would change. Forever.

Dozens of medications, hospital stays, clinic appointments, hours of chest therapy and nebulizer treatments awaited me. I would have to leave my baby in the hospital while I returned home.

Not anything unknown. But certainly nothing I thought I was capable of. But here we are today. Cooper has certainly blessed our family.

And doesn't he make an adorable Bucky?

The Wise Men read the books, learned where to find Christ, and traveled for days to meet him. For us, he's a short drive away, in the tabernacle.

The Wise Men gave their best to God. Do we give our best time, best efforts, best talents? Or what we don't want anyway?

Much love-Tiffany

And to all a Good Night!!

2010-12-23T20:16:00.000-08:00

Cooper's appointment today was a great one! Weight gain up and almost to 18 lbs. Not too shabby! His lungs on the other hand, could use some improvement. Dr. Green's suggestion was to try adding rifampin (the fun loving, color everything red antibiotic) to his regime until we find out his culture results early next week.

We thank you for your prayers, for your love and kindness this past year. We love you!
Have a very Merry Christmas.

A Must Have for Every CF Mom

2010-12-21T09:04:00.000-08:00

I am a firm believer in sharing new insights so others do not have to figure out things the "hard way." This is just one of those such things.

Squeezable Applesauce

Check out this puppy!

Pure Genius.

I think it was made for me. I am now a squeezable applesauce convert. Fully.

No more spilled applesauce in diaper bags. No more trying to transport to daycare, school, holiday parties, camping. It's perfect for mixing up enzymes before meal time. And if you don't have kids with CF (LUCKY!) these are great snacks on the go. No spoon needed!

I first spotted a version of this at a grocery store months back. But they were pricey. Like $1 pricey. But just a month ago or so I spotted them in Wal-Mart in the check-out aisle for 60 some cents!!!!!

Check out this link to find out where to buy or buy online in bulk!

"O Squeezable Applesauce" (sung to the tune of "O Christmas Tree")
O Squeezable Applesauce! O Squeezable Applesauce!
Thy container is amazing;
O Squeezable Applesauce! O Squeezable Applesauce!
It even reseals for later use;
Not only useful on the go,
But also when we're at home.
O Squeezable Applesauce! O Squeezable Applesauce!
You make enzyme-taking easier!

Cooper

2010-12-11T20:22:00.000-08:00

I hate to say it. But, it's been a while. It's a good kind of while though. Nothing major. Nothing earth-shattering. Nothing too unusual. The kids have healthy other than all running their course on a virus around Thanksgiving time. So, I'd say we're doing pretty well!

Cooper's last weight check-in was at his 6 month well-baby (ok, let's be real here. I I didn't get him there until more like 8 months!). From his previous weight his dietitian is estimating Cooper to be gaining 3/4 of an oz./day (whereas the normal is at least 1 oz.). He has finally crossed the threshold of drinking solely formula. I am sort of biased in favor of breastfeeding through 12 months but let me explain:

a) Cooper was starting to get a bit more interested in bottle feeds.
and b) we can fortify the heck out of formula with less time involved.

Dietitian Erin suggested 5 scoops per 9 oz of water, but when his weight gain still hadn't improved her recommendations went up to 6.5 scoops per 9 oz. And he's still getting plenty of melted butter a top his baby food and cereal (so jealous of him :))! Next weigh in: December 23rd! It's crazy to think that as I try to scrutinize my diet for ways to cut OUT calories I am doing the total opposite for the CF kids.

And I almost forgot to mention he got his first haircut! He is looking more handsome by the day!

Just for fun, here's a walk down memory lane to remember how each of the kiddos looked at this stage. In pictures they stay little forever...

Cayden

Colin

Trinity

Cooper

This Family Believes

2010-11-30T18:39:00.000-08:00

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

2010-11-28T19:28:00.000-08:00

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

2010-11-22T15:59:00.000-08:00

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

2010-11-19T19:56:00.000-08:00

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

2010-11-17T20:58:00.000-08:00

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

2010-11-08T18:43:00.000-08:00

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

2010-11-01T19:20:00.000-07:00

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!

We Wish to Welcome You....

2010-10-31T19:58:00.000-07:00

...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!

2010-10-28T20:41:00.000-07:00

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

2010-10-26T19:50:00.000-07:00

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!

2010-10-20T19:16:00.000-07:00

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

2010-10-18T19:35:00.000-07:00

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

2010-10-12T17:12:00.001-07:00

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...

Kickin' for a Cure!

2010-09-27T12:50:00.000-07:00

What an awesome weekend we had! An amazing weekend of good memories with our friends and family, raising nearly $10,000 towards a cure for cystic fibrosis. And so much fun we had!

Here's a link to the front-page write up in our local paper!

More pictures will be on the way in the days ahead. Put for now, a HUGE thank you to everyone who helped make this day possible.

Increase Chest PT

2010-09-22T12:18:00.000-07:00

I shouldn't have blogged about fall and cooler temps. Cayden's coughing (and so much that it's been waking him in the night), I have a cold starting, and Cooper has a cough. Our family motto at times such as this is: "if there's a cough, increase Chest PT"!

Last night Nana (my mom) surprised the kids with pizza from Rocky's. She came to help with laundry (if I could hire someone to fold it all, I totally would!) while I worked on last minute kickball details. We taped the kids doing treatments (phew: there's no way I could do it by myself) so we can hopefully run some footage during the tournament on a projector screen. It was so sweet, Colin even wanted a "turn" on the vest. Of course we let him because he thinks its normal (poor kid!).

2 more days until kickball. Prayers for great weather and good times!

A picture of my CF sweetie pies. This will definitely make my black and white collage wall...

Letters

2010-09-16T18:57:00.000-07:00

This post is for all my fellow CF mama's out there. In my recent search for books that explain CF in kid-friendly terms I found a gem:

This is what the book's all about: Cadberry's mom is very forgetful. Every time they visit his doctor together she talks about C & F. She never remembers the other letters. When Cadberry draws a set of letters to help his mother remember them all, he discovers what C & F really mean and how those two tiny letters affect so much of his life.

Such a sweet and simple story about a little bunny with CF.

This week will be a busy one. Our kickball tournament for CF "Kickin' for a Cure" is next Saturday! We have 15 teams registered, 23 diamond level sponsors ($100 value), and TONS of great stuff to silent and live auction. If you are in driving distance of Jefferson/Fort Atkinson come join us for a fun-filled day. It's a truly inspiring day for our family.

What else have we been keeping busy with...
+Cooper is loving on his "johnny jump-up"
+Cayden took his training wheels off after I picked him up from a friends and he had been riding all day long (he told Debbie he had ridden with 2 wheels before. Not!)
+Colin's training wheels came off a day later! It's hard work keeping up with your big brother.
+Both the boys are loving school. I love eating lunch with them each day. :) Colin enjoys having his "own" classroom where Cayden does not go!
+Trinity is talking sooo much more clearer. She's growing into a beautiful young lady. We got our nails done for Ashley's wedding. My new guilty pleasure! I'm so glad I have one lady in the house to get pampered with!
+Most of all, everyone is staying healthy. I love fall, it's my FAVORITE season. But secretly despise it. The drastic change in temperature can be a bit detrimental to the kids' "baseline-no cough".

I want to end this post with a quote I read during prayer time from Blessed John Henry Cardinal Newman:

The Mission of My Life
God has created me to do Him some definite service. He has committed some work to me which He has not committed to another. I have my mission. I may never know it in this life, but I shall be told it in the next. I am a link in a chain, a bond of connection between persons. He has not created me for naught. I shall do good; I shall do His work. I shall be an angel of peace, a preacher of truth in my own place, while not intending it if I do but keep His commandments. Therefore, I will trust Him, whatever I am, I can never be thrown away. If I am in sickness, my sickness may serve Him, in perplexity, my perplexity may serve Him. If I am in sorrow, my sorrow may serve Him. He does nothing in vain. He knows what He is about. He may take away my friends. He may throw me among strangers. He may make me feel desolate, make my spirits sink, hide my future from me. Still, He knows what He is about.

Have a restful weekend!
With Love,
Tiffany

To move you...

2010-09-14T07:54:00.000-07:00

http://www.todaystmj4.com/news/local/102521464.html

Treyton's mom giving the eulogy at his funeral Mass. What an amazing, unbelievably amazing mother.

Life's Hard Lessons

2010-09-13T19:33:00.000-07:00

It's been a while since I blogged and for those that do not know, our family has been deeply saddened by the lose of our dear friend's son Treyton. A six year old taken from earth on the night of his second day of 1st grade from a senseless tragedy: drunk driving.

A picture of Treyton and his family at our Great Strides walk 2 years ago this past May. He is the little boy in yellow on the right.

It has been undoubtedly one of the hardest weeks of my life both as a wife, mother, and friend. There have been many discussions at the breakfast table about death and heaven with our kids, but mostly Cayden. He asked me "Mommy, where is heaven?" I replied, "I'm not sure Cayden, I've never been there before." And then he asked, "Well, how do you know how to get there?" I replied again, "I'm not sure." As I looked over he was weeping and with tears in his eyes he explained that he was afraid to die, that he would miss me too much because I didn't know how to get to heaven. It was a wonderful opportunity to talk with him about our belief in God, in heaven and eternal life. But things are so simple to little children and I'm beginning to understand quite quickly that my explanations make no sense to him.

Every day he talks about dying and when I think he will die. I don't know the answer and to tell reassure him that I know for certain he will live to be old is not the truth. Because only God knows what we were created for. He is our Father and we, his children.

It has been a week and 2 days since the accident and Treyton's passing. And I can't help to think that just hours before the accident I sat next to his mom, the principal of our school, as we waited for our kindergartners to finish their first day of school. She held Cooper. And now, looking back I wish I could tell her to go and hold her son.

This past Saturday we were able to celebrate though. My little sister got married. She's the luckiest girl in the world and we are so happy for her! I am so proud of my beautiful family!

New Year, New Beginnings

2010-09-01T08:40:00.000-07:00

The graphic above was designed by one of our graduating seniors after our high school trip to Steubenville OH. I love it!

The beginning of another youth ministry year is so exciting. Back to school bashes, fresh ideas, creative posters, fun events, all the great planning right at the peak of perfection!

A few things I've compiled over the years that I try to keep in mind as I plan events for my youth:

1) Keep it consistent. Teens are so busy. Between work, sports, school, drama club, band, etc. the last thing they are looking for is another "thing" to keep up with. For middle school that means having youth group every single Monday. Same time, same place, a variety of activities.

2) Mix it up. Variety. In my ministry to young people, I've got to keep their interest. My goal is to offer at least 1 prayer experience, 1 just for fun/community building activity, and 1 family night a month. Sometimes this happens more than not. But the intention is to have balance.

The USCCB outlines this concept in Renewing the Vision: Components of a Comprehensive Ministry which breaks youth ministry into 8 categories.

The Ministry of Advocacy
The Ministry of Catechesis
The Ministry of Community Life
The Ministry of Evangelization
The Ministry of Justice and Service
The Ministry of Leadership Development
The Ministry of Pastoral Care
The Ministry of Prayer and Worship

2) The crazier, the better. Last year I took a group to a "lock-out" (the reverse of a lock-in) Lazer tagging from 1-3 AM! One mom asked me, "Why the odd time?" I thought the exact same thing when I sent out the postcards. But really, that's the beauty of it. We had 50 high schoolers come (which is always my challenge). This year we did it again, complete with a school bus, pizza and 20 high school students. Bad planning on my part. There was an away football game and soccer the next morning. Sometimes I don't always follow my own rules. Refer back to #1. Middle School's tradition started last year with celebrating youth group's "birthday". This year Powerhouse (as we call it) is turning FouRRRRR! So we're celebrating with a Pirate party, cake and ice cream. A parish member makes us a homemade cake, we sing and blow out the candles. The night is complete with the teens bringing fun gifts for youth group to use in the upcoming year. The challenge is that they can not spend more than $10 on their items.

Here's more of what I have in store for our high school and middle school programs:

PowerHouse youth Group
Grades 6-8 are welcome!
This Is What We’ll Do in September.

20- Mini-Golf @ Vitenese in Madison from 5 pm-9 pm
*You’ll need a permission slip for this event and some money. Please meet in the back parking lot, leaving @ 5 pm. More details coming soon!

27- Family Dinner & a Movie Night
“The Blindside” from 6-8 pm (8th Grade Room)

High School
Sept. 19th: Mass on State Street
Sept. 26th: Youth Mass @ 7 pm
Oct. 2nd: Fire on the Hill @ Holy Hill
Oct. 24th: Youth Mass @ 7 pm
Nov. 5th-7th; Youth 2000 Retreat in Madison
Nov. 14th: Theology of the Body Night
Nov. 21st: Youth Mass @ 7 pm

I’m looking forward to another awesome year to grow in my Catholic faith along with some pretty amazing teens!

Update on Cooper

2010-08-31T19:22:00.000-07:00

A little more on Cooper's enlarged colon:
I spoke with his dietitian today about his GI issues and the x-ray results. Her suggestion was to continue with the Florajen capsules (1 is equal to 10 cups of yogurt :)) once a day to promote good bacteria growth AND increase his enzymes per feeding from 3 to 3.5 for a good week or two. Then, if he STILL doesn't seem to be doing well we'll look into taking him to a GI peds specialist at the UW. Then the plan might include an abdominal scan. She thought our concern of possible surgery to correct the issue may very well be a possibility to pursue in the future.

On a good note, kickball is only 24 days away! We are getting really excited and thrilled to see all the support coming our way. There are lots of new sponsors, a few new teams and hopefully lots of money to be raised. Last year we raised close to $10,000. Here's an updated list of all our sponsors so far:

Diamond Sponsors ($100)
Subway
Eric Felth, State Farm
Sullivan Vet
Sherman Sanitation
Sentry Vos
T & C Transfer
Petro Oil
Werner Pump Service
Knights of Columbus
Catholic Family Insurance
Catholic Knights
Dawg Daze Entertainment
Capn’s Steakhouse
Aropa
Slewfoot
The Drug Store
Pro Build
Ruffin’ It Resort
Adecco

T-shirt Sponsors ($75)
County City Credit Union, Jefferson

Base Sponsors ($25)
Creature Comforts
Maas Brothers Construction
Once and Again Consignments
Blackhawk Tavern and Grill
Crawfish Corners
Chemair Helicopters
Ultimate Excavating

If you haven't checked out the "official" Kickin' for a Cure website, take some time and do it today! www.kickin4acure.com

We are so blessed to have "techno-savy" neighbors Tim and Ann Marie to create and keep it up-to-date. Enjoy all their hard work!

The Big Question

2010-08-26T13:54:00.000-07:00

So this past week, Cayden asked me two very important questions.
The first: "Mom, when I am old enough to drive can I go to a hotel without asking?"

And the second: "Why did God make me with CF?"
Tear.

We knew this day would come. And we were prepared. When Cayden was diagnosed I bought a book that I've been keeping just for this day. I had to locate it first. I lent it out to a friend.

"Grateful: A Song of Giving Thanks."

It goes like this:

I've got a roof over my head.
I've got a warm place to sleep.
Some nights I lie awake counting gifts
Instead of counting sheep.
I've got a heart that can hold love.
I've got a mind that can think.
There may be times when I lose the light
And let my spirits sink...
But I can't stay depressed
When I remember how I'm blessed!

Grateful, grateful
Truly grateful I am
Grateful, grateful
Truly blessed
And duly grateful.

It's not that I don't want a lot,
Or hope for more or dream of more.
But giving thanks for what I've got
Makes me so much happier than keeping score.
In a world that can bring pain,
I will still take each chance...
For I believe that whatever the terrain
Our feet can learn to dance.
Whatever stone life may sling,
We can moan...
Or we can sing!

Keep Cooper in your prayers. He still is showing a spot on his lung x-ray from when he had pneumonia and an enlarged colon from malabsorption. Remembering all the while, that we are truly grateful.

Cooper's 1st Ride in a Swing

2010-08-18T08:53:00.000-07:00

Milestones

2010-08-14T08:46:00.000-07:00

When I asked Cayden what his favorite thing about visitng Dr. Green was he said "Playing with the chalk board!"

Cayden and Trinity had their 3 month appointments at the CF clinic yesterday. Here's how they did:

Trinity waiting patiently for her exam. They have to be naked for weights and for lung exams :)

Trinity got an inch taller (yeah!), but not any heavier (double ughgh!).
We talked with Dr. Green about her troubles with doing nebulizers each day. Such a battle during her terrible two's! We certainly didn't have this much resistance from Cayden as a toddler so we are in unchartered territory! It's a tough one and we are doing all the things we should be...
-doing therapy consistently and as much of a "regular" routine as possible
-doing therapy ALL together as a family event
-watching tv, working on puzzles, coloring, etc.

Many parents have their own philosophies about fighting with their kids to do treatments. Some refuse to force treatments on their kids. Chris and I have always weighed in on the side of doing it no matter what. The sooner they realize that this is not an optional part of their day the better. Right now is a huge building block for their future when mom and dad aren't with them to do treatment every day :). I truly believe you have to just keep plowing through the "rebellion" to show them how important it is for their health.

Other than Trinity's weight, Dr. Green was super happy with her health. No cough!

Cayden had a great appointment too! He gained a whopping 1.5 lbs in just 2 1/2 months! Yeah! He made it to a new milestone starting PFT's (pulmonary function tests) before each appointment. He didn't quite get the hang of it, but the good news is that he has the rest of his life to figure them out :)

He did awesome though for his first time. It's hard to understand taking little breaths, little breaths, and one BIG fast breath out. He did great blowing out hard. Just not fast enough and not long enough. He said the nose clip squeezed too hard!
The nose clip stops him from breathing through his nose.

Looking at the computer results. They didn't get a good reading since Cayden didn't quite exhale for 3 seconds. His last two tries were the best :)

It's a pretty big machine for a little guy!

Soaking Up Summer

2010-08-05T06:52:00.001-07:00

Cooper loves to smile! And he loves to cry. More than any of the other kiddos did. We're hoping he'll grow out of this "colicky" stage quickly, but in the meantime he's keeping us busy. And I'm trying to enjoy him even when he screams at the top of his lungs when I set him down for even just a second to help get a meal on the table or fold a load of laundry.

We've been trying to soak up the last bits of summer and make the most of the days we have left! Next week Cayden and Colin are coming with our church group to Mt. Olympus for the day. Then, it's back to school shopping for the boys. Cayden will be starting kindergarten and Colin PreK3 2 days a week. Time is going by too fast. Slow down, time!

Our family has been really blessed by the church ladies and families at St. John's who continue to make us delicious meals twice a week. It's a huge blessing to not be spending my time in the kitchen right now! But I do miss trying new recipes. It's not a priority for me right now. I just recently heard this analogy of replacing the phrase "I don't have time..." with "It isn't a priority..." The next time you catch yourself saying to someone "I don't have time..." replace it. It's a great way to reevaluate what you're saying. Example-I don't have time to play with my kids. It isn't a priority to play with my kids. Ouch.

Cayden and Trinity have their next 3 month CF appointments on the 13th. Cayden starts PFTS...so excited to see how he does! Cooper goes in for a follow-up the week after.

And as much as I love the beauty of all summer has to offer I'm really looking forward to fall (thanks Anne!). My plants are all dying, the weeds are overgrowing. I feel like apologizing to visitors for my overgrown flower beds and lack of energy to do anything about it. Simply put, it's a priority right now to love our kids! Enjoy the beautiful weather!

30

2010-07-21T08:49:00.000-07:00

After three long, tiring and gruesome weeks our house is MRSA free. It's a miracle. But then, I'm not surprised that the God of the universe chose to make his presence known in our house on High Ave. I can't tell you how we did it, and well then again, yes I can. We did everything the doctors asked of us and then some. We prayed. That's what faith can do. It can move mountains and sure as heck, kick bacteria out of my little cfer's sputum cultures. I have to admit though (look up admit in any Webster's thesaurus and you'll get some version of the word confess) there is nothing quite more humbling than having a doctor check your three thousand parts for MRSA. Actually, it's just three parts, but three thousand sounds better. My dad always exaggerates. Growing up with him probably rubbed off a little on me. I always knew to divide whatever he said in half. That was a much more accurate assessment of the situation. My husband is the same. But he UNDER exaggerates. Everything he says in terms of time needs to be doubled to be truly authentic. I know that if he says he'll be home in an hour he really means two.

This weekend I spent the weekend in Steubenville, OH being completely amazed at the work our Lord is doing in the hearts of our parish's youth. But unexpectedly, he did something amazing in my heart as well. On the 10 hour bus ride home the 28 of us shared what the Lord had done in our life over the conference. We heard some amazing stories from the young people that truly inspired me. A girl who just graduated from high school is giving up purchasing clothes for herself and in turn, saving the money so she can go and do mission work sometime in the future. Another, is going to attend daily Mass. A young man from our group wants to start a 'brotherhood' for young men in our parish to come together monthly and pray with one another in their struggles of faith.

I shared with our group my hope for the weekend was to be real with our Lord in adoration and ask of Him one very honest question: Why me? Why have I been chosen to care for three children with special needs.

And he answered. Through the voice of the keynote speaker, Chris Padgett.

He asked us to repeat the phrase "Jesus picks me." The first time, it was just the words that slipped off my tongue. Nothing more than that. Just the words. The second time yet again, just the words. And finally the third time it came from the heart. Jesus picks me.

And then came my rebuttle. Sure, I get it. Jesus picked me. But I am not equipped for what it takes. I don't have nearly the gifts to even begin to feel adequate.

Jesus answered again. He asked us to repeat this phrase: "Jesus prepares me." Yup, like an iron skillet to the head, God wacked my mind back to divine revelation. And to seal the deal, the third and final phrase was "Jesus protects me."

I told the teens on our bus that Sunday that so many of my last few month's days were filled with "This not my life.." "I don't want to do this..." "I can't possibly."

Every single one of us committed to praying for the next 30 days consecuetively. Why 30? Research shows it takes 21 days to form a habit out of doing something. 30 seals the deal. Today is day 3 and I'm proud to say I've been able to remain faithful to this committment. For the first time in my entire life, I've decided to read a book (and by first time, I mean a real and honest read from beginning to end). God, Help Me: How to Grow in Prayer. I'm already 3/4 of the way into it, but I highly recommend it! I'll try and recap some of the highlights from it in the weeks to come.

Completely and Totally in Awe

2010-06-27T19:56:00.000-07:00

Surrounded by Your glory, what will my heart feel
Will I dance for you Jesus or in awe of you be still
Will I stand in your presence or to my knees will I fall
Will I sing hallelujah, will I be able to speak at all
I can only imagine

These are the lyrics to the song Chris and I chose for our unity candle song on our wedding day. Caring for three small children with a life-threatening disease has given me more reason to believe that we picked this song not because it was popular at the time or that we thought of each other when we heard the first few lines. Lately, I can't help but think of the significance of this song in our lives at this particular moment in God's time, in God's plan for us. All this pain and suffering we are enduring is temporary. In heaven, we are promised to be glorified to complete perfection. And the sacrament of marriage points us to eternal life. It is a foreshadowing, a glimmer of the great love we will experience with our Maker.

I began this blog with the thought of "in awe."

It had nothing to do with the lyrics to "I Can Only Imagine."

It had everything to do with the generosity of our friends. I am completely and totally in awe of friends close and not-so close who have offered some pretty amazing things to our family right now. We seriously have the best friends. And I think after I explain why, you'll completely agree with me.

One friend has offered to help with laundry. Another, to watch my kids for an afternoon. And another, taking us out to dinner. And the friends who have offered their humble prayers, I can't even begin to count. If you're reading this and you're one of these friends: thank you from the bottoms of our hearts. We can never "repay" you, but you hold a special place in our hearts.

It's overwhelming how much God takes care of us sometimes. But he will not be out done in generosity. He continually finds ways to bless us for caring for these special children of His.

It's getting late and tomorrow my baby turns 5. Wow, five! Everyone said the time would fly by and they were right. 5 years ago I was changed forever. And tomorrow I'll change again. Thank you God, for blessing our family with the gift of Cayden. I've leave you with this poem that I keep on our fridge. It is near and dear to my heart. It is what I hope to live every day.

Special Child

by Sharon Harris

You weren't like other children,
And God was well aware,
You'd need a caring family,
With love enough to share.

And so He sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.

Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.

We're proud that we've been chosen,
To help you learn and grow,
The joy that you have brought us,
Is more than you can know.

A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
But most of all - "Real Love"

Cayden, may all your dreams come true. I love you! -Mommy

Are You There God, It's Me Tiffany

2010-06-23T19:45:00.000-07:00

Remember the book "Are You There God, It's Me Margaret"? It was a huge phenomenon when I was in middle school to read the book by Judy Blume that followed twelve-year-old Margaret and all her minuscule problems. Today I feel like Margaret. ARE you there God? Between Cooper's three week span of hospital stays, adjusting to all the new medications, and me having mastitis last week I thought I'd seen it all. Last Thursday, Cayden and Trinity's sputum cultures from last week's clinic proved otherwise. Let me start with updates from clinic.

Trinity-gained just over a pound (we'll continue to give her Scandishakes before bed and increase to 3 enzymes before meals and snacks).

Cayden-barely gained any weight. Our dietitian would like us to increase his calories as well since he's on a new enzyme. Cayden's also old enough now to start PFTs (pulmonary function tests) which measure the amount of air exhaled from full inhalation to full expiration (empty). The pulmonary doctors will be able to use these numbers to compare Cayden's to normal numbers for someone his age, height, etc. to determine the health of his lungs. He will continue to do PFTs for the rest of his life.

Back in December Cayden grew MRSA- Methicillin-resistant Staphylococcus aureus- an infection caused by a strain of staph bacteria that's become resistant to the antibiotics commonly used to treat ordinary staph infections.
This month Cayden grew it again and so did Trinity. Protocol for eradicating MRSA includes very high doses of antibiotics both oral and nasal. Some people that grow MRSA once will never get rid of it. Others may. With Trin's recent sputum culture suggesting that the MRSA is active and has more than likely spread from her older brother Dr. Green would like us to try a more proactive approach for the next 3 weeks.

The eradictation process is as follows (this is an exact copy of the email I received from the kids' clinic):

Both Cayden and Trinity now have MRSA by cough throat swab. I conferred
with Dr. Rock and Dr. Conway and later with mom. We will attempt to
eradicate the MRSA in both children and to try to eradicate carriage in the
family.

For Cayden:

1. Bactrim: 2 SS tabs by mouth twice daily for 28 days
2. Rifampin 1 300 mg cap by mouth daily for 28 days
3. Mucopirocin 1/2g or 1/2 of a 1 g tube into each nostril twice a day for
5 days
4. Chlorhexidine bath daily for 5 days and then weekly for the next 3
weeks.
5. Keep the mucopirocin and chlorhexidine out of the eyes.
6. CBC, AST and Cr (blood work) after 2-3 weeks of treatment by Laura Runte or Dr. Kazi
7. Repeat culture in 2-4 weeks after finishing treatment
8. Wipe surfaces that may be contaminated from coughing or nasal mucus at
home with a household disinfectant such as Lysol or
a bleach solution (1 cup of bleach diluted with 9 cups of water) and
let dry.
9. Towels, sheets, and pillow cases or other items that may be contaminated
by respiratory secretions should be washed in hot water and dried on the
hot cycle.

For Trinity:

The same as above except the antibiotic doses differ:

1. Bactrim 15 mL per dose by mouth twice a day
2. Rifampin 4 mL of the 50 mg/mL solution once a day

For Mom, Dad, Colin, and Cooper:

The mucopirocin nasal treatments and Chlorhexidine baths as above but not
oral antibiotics.

Does your head hurt reading this? Yeah, mine too! We started treatment today and things went fairly smooth. 4 more to go! But really God, are you there is still in the back of my mind. I feel so abandoned. Why one more thing...why now? So I'll do my best. I washed all the bedding today and bleached every hard surface in the house, Lysoled the toys. Now, I just need to "treat" myself to a nice, warm chlorhexidine bath!

Getting Organized

2010-06-15T19:44:00.000-07:00

It's been almost a week since we brought Cooper home from his hospitalization with pneumonia. 7 whole days to get organized and 'figure out' as best we can what taking care of three CFers really means.

Item #1 "The Medicine Cabinet"
I realize that most families function with a very small, confined space to house all their medications. We, however, took out an entire cabinet section. Before: it functioned as a spare pantry. After: A CFer's paradise

Item #2 "White Boarding it in Style"
I watch too much HGTV. Enough said. We use this handy tool, located in the kitchen near all the action, to keep us on task with all the medicines!

A pic of Trinity enjoying her new "boat ride." Cayden affectionately named the vest a "boat" since it looks just like a life jacket you would wear boating.

Somehow Trinity has managed to make a system of multi-tasking while doing her hypertonic saline treatments: holding her mask and sucking her thumb at the same time

Cooper is doing a great job keeping up with his older brother and sister. He already holds his nebulizer! What a big guy...we're so proud of you Cooper!

While I can't fully capture the essence of the chaos it entails doing daily treatments on a blog, all I can think of to describe it is a massive assembly line. For 2 hours at night we are constantly rotating the three through nebs, oral drugs, vest treatments. It's exhausting. Words don't do it justice...you just have to experience it live!

Extra Baggage

2010-06-08T12:39:00.000-07:00

Finally, after 8 days Cooper will be coming home tomorrow. I am elated. Finally, I will get to see my husband again and my kids will get to see their dad. Chris has been taking the night shift and I the day so we have only seen each other in passing (aka "changing of the guards"). I have to be perfectly honest though; I am also very anxious about bringing Cooper home. He's bringing with him 2 exta oral medicines and a nebulizer treatment for the next five days. He has already started and will continue doing Pulmozyme nebulizer treatments (something Cayden and Trinity didn't start until closer to a year old). And so, without any further ado, I present...

The Topel Family Daily Index:

7: number of nebulizer treatments done daily between the three kids
6-8: average number of airway clearance sessions that will need to be done
8: number of oral medications (not counting enzymes)
2: packets of Scandishake Mix for Trinity
1 1/8: number of tsp of extra salt to pass around the table :)
4: number of kids to love
2: loads of laundry to do
7: the hours of sleep I hope to get
1: glass of wine for mom!

And the words I'll savor as I go about my day:
Each one of them is Jesus in disguise. -Blessed Mother Teresa of Calcutta

When Is Baby Cooper Coming Home?

2010-06-05T20:54:00.000-07:00

Here are some pictures of Cayden, Colin, and Trinity's first trip to see Cooper since he was hospitalized last Tuesday. They miss him so much and ask everyday "When is baby Cooper coming home?"

Can I Get A Yeah for the Topel 2?

2010-06-03T14:55:00.000-07:00

Some new pictures of the kids

Being the mom of three boys definitely has its perks!

Cooper had a great day today! He ate a "normal" amount at his feeding this afternoon---almost 6 oz.! When he was admitted he was only eating around 2 oz. so this is a huge, huge accomplishment.

With all the excitement with Cooper, I completely forgot to bask in our great accomplishment of the Topel 2 team raising nearly $13,000 at our Great Strides walk on May 16th! We have been so blessed with friends and family new and old this year helping us reach our goal! Talk about inspiration, a high schooler from church organized a team of her own and brought in an addition $200. And another bunch of friends ran a half marathon in Green Bay in honor of Cayden and Trinity raising over $500! A mom with a son in Cayden's class joined our team for the first year and helped us raise an additional $130 (in just a few short weeks, mind you) along with some other great families from St. John the Baptist's school also contributing $100 in donations. A 4th grader from Cayden's school even collected money all on her own. We simply have the best friends! It has been an amazing journey. We'll have to start thinking of great new names for Topel 2 since we have become Topel 3. It's still a work in progress! I am slowly starting to work on our kickball tournament slated for Sept. 25th. Let me know if you need a registration form :).

Peace-Tiffany

Before the Morning

2010-06-01T20:08:00.000-07:00

"Let us not become weary in doing good." St. Paul to the Galations

Most of you have been keeping up with my short "what's on your mind" facebook status updates, but I wanted to share more about Cooper's health right now.

This past Tuesday I took Cooper to the ER for trouble breathing, lack of appetite, and being overly lethargic. It turned out my gut instict that something was wrong was. His blood oxygen level was low and he needed oxygen to help him breath through whatever virus his small, small body was fighting. 2 days later things were improving, he was eating well and back to nearly "normal." Over the weekend his health made a turn for the worse. He again stopped eating and slept almost all day. When he was awake he would have such terrible coughing spells that he would need chest PT for them to stop. On Saturday into Sunday he started vomitting with each feeding making us concerned that he wasn't gaining weight, but losing weight.

Sunday night was the breaking point. I simply was exhausted from watching my newborn struggle through feedings and then when he finally did eat, throw most of it back up almost immediatley. Without thinking twice we called the CF doctor on call and took him back to the ER to be admitted as inpatient. This time, his chest x-ray showed fluid in his lungs and a blood draw confirmed the diagnosis of pnemonia. The virus Cooper had been fighting took a turn for the worse.

Today, Cooper began IV antibiotics, nebulizer treatments for his cough and chest therapy. At this time, the doctors expect him to be admitted for 7-10 days. Maybe more. Our family priest who has baptized all three of our other children was able to come and baptize Cooper today in the hospital. His "real" baptism wasn't scheduled until June 12th but we know he can use all the more grace now to fight through this!

This is not the norm for an infant with CF to be hospitalized. Neither Cayden or Trinity were hospitaled as infants so it worries us to think that he is starting out in this world already with lung infection. And of course there is no way of knowing if Cooper will have a harder time with CF or not. There is just no way to predict the future. I am confident, however, that because Cooper has the same genes that his older siblings have that like them, he will do remarkably well and have more digesitve problems. As a mom, my heart is breaking. I just want to be able to enjoy having a new baby and even that seems impossible with so many disruptions right now. As a person who tries to do everything perfect, I am judemental. What could I have done to stop this? I feel like if I had only taken him in sooner or done more treatments he would be home with us right now. Pnemonia is a scary thing and I am so fearful for his life. But we continue to pray for God's healing. And we know that we have already been through a long hosptial stay but this feels like too much.

I know I share a lot of songs, but being a musician they really speak to my heart and give me sooo much encouragement to hold onto my faith when life is just too much. Somewhere in all this pain and suffering there is much greater joy coming. I will share more updates on Cooper as they come. We are so grateful for your prayers!

If you like the song, you'll love to hear the story behind it. We have to trust that whatever God is doing in our life right now is for a greater good. And it is simply just that. We have no other choice.

My To-Do: BLOG!

2010-05-26T19:02:00.000-07:00

In my mind, I have blogged at least 10 times in the past month. But that is most certainly NOT the case. It has been an extraordinary, yet unbelievable journey. One filled with so much joy and at the same time so much sorrow.

Cooper was born on April 26th @ 9:29 pm. Weighing 9 lbs 3 oz. Chris and I were convinced from day 1 Cooper would be a girl. It was so overwhelming not knowing the sex of our baby and waiting for that moment when we found out. He is the most adorable little boy. God had a few surprises in store for us. Holding him in my arms for the first time was incredible. He was absolutely perfect! 2 days later on the feast of St. Gianna (the saint we had been praying for a healthy baby to during Cooper's pregnancy) Cooper was rushed to the NICU for a bowl obstruction. Something that only happens in 10-15% of all infant cystic fibrosis cases. As we weathered the storm of Cooper's illness Chris and I prayed like crazy that this was just a mere coincidence: that we had 2 children with CF but that the bowel obstruction could possibly be just that and nothing more. That day we accepted his diagnosis but were completely confused. How could this be? Why? How can we possibly care for 3 children with CF and a healthy son? There were few words and many questions running through our heads and hearts. The days that followed were spent living a double life. Seeing our other 3 children as often as possible and going back and forth from the hospital to be with our newborn. I have never felt such emptiness leaving our new baby. In the wee hours of the night I woke up to pump and called the NICU to check in on Cooper. I hung up with phone choking back tears. It was so difficult. 7 days and 2 enemas later the bowl obstruction cleared without surgery (praise God). We were, in a word, able to breath again. Surgery would have been very risky and not without future complications. The hope that we held onto that Cooper was a healthy little boy was diminished on the day of his release from the NICU when his blood work confirmed what our head was telling us. He had cystic fibrosis.

As a mom with multiple children with CF it is sometimes a challenge not to see "CF" when I look at my children but to see a regular, tiny precious human being. And that's how I try to treat them. I can't tell you how agonizing it is to see someone for the first time out with Cooper and wait for the dreaded "is he healthy?" question. I hate to hear the "I'm sorry's" because I don't want people to be sorry for us. I want to celebrate this new life from God that we have been extremely blessed to care for. It is a privilege, not a burden. Equally difficult is when people tell you they have been praying for Cooper to be healthy. That's not any easier than the "is he healthy" answer. I feel like we're taking people's faith away. But I know that it is prayer that gets us through each passing day and gives me the strength as a mom to continue to care for them when it gets "hard." If nothing else I have been amazed by the people who have been led to their knees because of our children. It is humbling to know that they are turning to God in a difficult situation. And someday Chris and I will know the purpose of us caring for 3 children with CF but for now while we are on this earth it remains a mystery. Nothing in life is easy, but the best and most important things are worth fighting for. This is our family and this is our normal. I feel so blessed to be given the incredible task of caring for each of them.

And maybe, someday, we'll figure all this out.

The Veil Was Torn

2010-03-31T10:42:00.000-07:00

Confession: This is my newest fascination: the veil that separated the sanctuary (otherwise known as the Holy of Holies) in the Jewish temple and the rest of the church. I found this great video with some history in it to use for a station at religious ed. tonight called "Journey to the Cross."

Have a 'holy' Holy Week. Journey to the Christ as we enter the Triddum (latin for three days).

Tiffany

Our 2010 Montage!

2010-03-30T19:39:00.001-07:00

Make video montages at www.OneTrueMedia.com

What Faith Can Do

2010-03-17T09:21:00.000-07:00

Confession: I've been thinking about a new montage for this year's CF Great Strides, but that's about as far as I've gotten with that. Just thought about it.

Then, this morning on the way to work this song game on. Ok. I'll do it, Lord.

Check it out (the song that is). Montage to come in a week or so...

Listen: http://www.youtube.com/watch?v=pO6DXOsKOw4

Lyrics: What Faith Can Do (Kutless)
Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think its more than you can take
But you are stronger, stronger than you know
Don't you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining

I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do

It doesn't matter what you've heard
Impossible is not a word
It's just a reason for someone not to try
Everybody's scared to death
When they decide to take that step
Out on the water
It'll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do

Overcome the odds
You don't have a chance
(That's what faith can do)
When the world says you can't
It'll tell you that you can!

I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
That's what faith can do!
Even if you fall sometimes
You will have the strength to rise