Friday, June 28, 2013

Links for Lucy!

Whew!  What a wonderfully successful event our (possibly first annual?) Links for Lucy golf outing and dinner was!  We actually got there on time, and so Lucy was able to greet people in the clubhouse before they headed out.

Sawyer wasn't golfing, but she said hi to him anyway.

Everyone arrived early to check in and get their drinks (this is Wisconsin, after all.)

Cheers, Daddy!

Once everyone checked in, they were ready to head out!

Good luck Daddy!

The weather held, and I really think the overcast skies and breeze on the course helped keep our golfers from melting completely.  They golfed a full 18 holes on the beautiful course at The Golf Club at Camelot.  Just as the golfers were starting, some of Lucy's friends arrived, so we got to chat for a bit!

Jerika, Mateo, and Lucy just chillin'.

Then we had to head inside to set up the silent auction and other prizes to be had :)

Lucy, holding down the fort.

Lots of goodies!

A very cool cigar box guitar, handmade by the talented Jamie Bark.

By the time we finally managed to fit everything on the tables, our first golfers were starting to trickle in, and we had a few more of Lucy's friends who had joined us - they came from near, and as far away as 4 1/2 hours!

Partying outside - not everyone is a polar bear like Lucy, and the building was heavily air conditioned :)

The lovely Leah :)

After getting a sugar packet rush, wheelchair races started!

The last golfers arrived, and the charming and talented Tyler started talking up the prizes - I don't think a single person escaped his spiel!  

Bidding on something himself, because he's just that great a guy.

Then Lucy's grandpa Greg led with a wonderful prayer, and we all got to chow down - those golfers looked pretty hungry at that point, so we thought it best not to deprive them :)  

After dinner, Noah got on the mic to thank everyone for everything that was done to put this event together.  It all seemed to come together so seamlessly to us, but that was because of the generosity and hard work of so many!  He got to give away the prizes and silent auction items as well, and kept everyone laughing the whole time :)

The night ended at the perfect time for Lucy - even without golfing 18, it was a long day for her, and she was ready for the comfort of home.

Lucy's "done" face - at least Gabbie is smiling!

Ahh... bipap.

At the end of the day, my cheeks hurt from all the smiling I had done.  The feeling of the whole event was one of family, camaraderie, and warmth - every person there wanted to help Lucy, and that was an incredible feeling.  We even had a woman come into our building after she was done golfing, who had seen the signs for the event and wanted to donate to Lucy!  The whole thing was just incredible.  And when everything was said and done, with all the golfers and dinners, silent auction and prizes, and other donations - and an anticipated donation from the West Fond du Lac chapter of Thrivent Financial for Lutherans of $750, after we submit them our total - we came in at a little over $8,000!  More than I ever imagined we would receive.  And it also came with suggestions of doing the event again next year, which we are game for!  There are many things that a child with SMA needs, especially as they get older, and you realize that for your child, SMA is not a sprint, it's a marathon.  We are so extremely grateful for the way our community has opened their hearts to Lucy.

Thank you to the huge group of people and businesses who made this happen!  To Lucy's Grandma Lauri for organizing, Grandpa Greg and Grandpa Jim for helping to get donations and baskets, and to our hole sponsors:

Caroline Lamont of Stage Me to Sell
Andy Bauer's Dumpster Service
Khale's Krusade/Dr. Peter and Pamela Timmermans
Paul and Laurie Krasin
Jeff and Cheryl Kuntz

A big thank you to all the people and business who donated prizes and silent auction items:

Gilles - I realize it's spelled differently on the website, but if you'll look at the picture on the left, that is the location in our town; spelled "Gilles" :)
the Packers
Jacobson Farmers Supply
Jamie Bark
Lucy Zahn
Greg and Lauri Betz
Jim and Jeanne Zahn
Gene and Irene Miller
Matthew and Colleen Zahn
Don and Carol Huck
Juddy and Brooke Herwig
Beth Cornwell
Trisha Branson
Bette Vollert
Merry Damrow
Joan Buerger
Kate Vogedes
Ken Reimer

If anyone was left off the list, I'm sorry - our recordkeeping will be improved next year, I promise :)  Know that we are grateful for your contribution as well!

Everyone was amazed at the bounty on the tables :)  Thank you to Tyler for running that business - he did an extraordinary job, and we hope to retain his services next year!  And heartfelt thanks to all of the attendees and donors.  It was amazing to see the people there, people who set aside that day to help Lucy.  The generosity and love was incredible to feel, and we won't forget it.

Now, onto the next fundraiser, and making more strides toward our home addition!

Friday, June 14, 2013

Lucy checkup update!

We had a follow-up appointment in Madison at the American Families Children's Hospital for Lucy today, to have another ultrasound on the bulge in her stomach, and to talk with Dr. Nichol about the results.  The ultrasound was super early for Lucy (as in 9:50am), so she was less than thrilled about getting probed.

Dr. Nichol then came in and checked Lucy out.  We haven't seen him since he did Lucy's g-tube/nissen when she was 5 months old, and he was shocked at how tall she was :)  Really, when we tell people her age, everyone is.  Anyway, he felt around on her tummy, and said that the lump was for sure an ovary.  He discussed the results with the radiologist, and there is nothing abnormal about it.  He also explained the reason that it is more pronounced when Lucy is trying to relieve herself - her insides are contracting.  If someone would have just explained that to me in the beginning, I would have been more inclined to believe it was actually Lucy's innards I was feeling, and not a giant blockage!  But now we know, so that's good.  And everything is okay, which is even better.

I got a wild hair when we got back, and decided to rip apart and wash down a playhouse that was gifted to Lucy by a very special friend a couple of years ago; Brianna also has SMA, and was very generous in giving Lucy the playhouse that she had grown out of.  Since it's so hard for me to get Lucy in our backyard by myself during the day, and our deck isn't particularly structurally sound enough to have such a large and heavy toy on it, we haven't gotten much use of it, and that is a shame, since it's perfect for Lucy!  I've been inspired by Pinterest, and decided to give it a makeover so that when Lucy gets her new doll for her birthday, they will have a place to play.  We are going to bring it indoors, so she can play with it in the summer when it's too hot to go out, and in the winter, when we are on lockdown.  I may be more excited than she is!

Hopefully by the end of the weekend, I will have some "after" pictures to show you!

We are coming into the home stretch before our Links for Lucy golf outing and dinner.  Attendance is looking minimal, but every dollar helps, and we are so grateful for the donations, the hole sponsors, and for those who will be joining us at the event.  We are very blessed to have some extra special people in our lives!  You can still register to join us, either for golf and dinner, or just dinner - email me at

Tuesday, June 11, 2013

Summertime Fun!

Summer is finally, fully here!  And we have been celebrating with lots of fun outings - some of them so fun, I have forgotten to take pictures!  Anyone who knows me is so shocked by that statement, I hope you are sitting down ;)

We started with a visit to a friend's farm, to see the cows and ducks.  Lucy was fortunate enough to get a private tour, so she could get up close and personal with the savage beasts.

This cow.  Is trying.  To eat me.

And she got to watch some profession duck herders corral the flock.

We tried to sneak closer, but Lucy's duck-murdering-machine (aka her stroller) kept them on the move.

We didn't let a few sprinkles, some breezy weather, and a missing Daddy stop us from checking out the Memorial Day parade.  Thank you to all of our servicemen and women.

Of course, Lucy's favorite parts were the noisy bands and the blaring sirens.

They're comin' ta git me!

We also hit up the June Dairy Days festival, which had its very own petting zoo full of baby animals yelling for their parents.  Lucy got all kinds of little creatures brought to her, including a baby goat, fluffy chicks, the teeniest, softest baby bunny I had ever seen (seriously, its eyes weren't even open yet!), llamas, and on the way out we hit up the baby calf, which was covered with children and frozen in fear earlier.  (Disclaimer: not sure if calf was frozen with fear or lounging in the shade, but I initially didn't even realize it was there, there were that many children piled on top of it.)  Noah got Lucy up out of her stroller and crouched down with her, since the calf wasn't coming to us, and I helped her pet.  It was her favorite, as indicated by her huge grin!  No pictures; this was a busy, crowded event, and I was on high alert for a sticky, dairy-covered kid running into Lucy's stroller.

We had cousins visit from Georgia, and the last day of school party at the park.  We got a chance to take Lucy to her classroom one more time, and then I was able to walk her to the park to meet up with her class and one other for a play afternoon.  She got to take turns on the slide and swing, which she thoroughly enjoyed, and meet a cluster of "big girls" (FIVE year olds, look out!)  Everyone was so friendly and thoughtful, and it really was nice to see Lucy be included and loved by kids her age.  Again, no pictures - if you can figure out how to snap a shot while you're sliding 33lbs of unassisted weight down a slide, you let me know.

We also got to meet up with some of our SMA family at Gilles!  The Burks family drives all the way from Kansas to see Lucy's famous, fantastic pulmonologist in Madison, so we coerced them, with promises of frozen custard, into tacking on some extra drive time to come see Lucy and Mateo.  The kids hung out and the parents got to catch up and compare notes.  It's always so nice to see some of the clan :)


The aforementioned clan.

After it was all over - she got a lot of fresh air that afternoon!

And we got to hit up the famous Walleye Weekend on Sunday, to see my favorite cover band and yours - The Presidents.  As I heard it put so aptly on the radio, they're not just music; they're the whole show.  And Lucy even got a shout-out, which led to a woman approaching us and offering to put a donation canister for Lucy out in her establishment!  We left, feeling that our socks had been thoroughly rocked off, and that there are lots of good people in the world (after having one of our canisters stolen out of a restaurant a few weeks ago.)

Other than that, it's been a pretty average, wonderful start to the season; lots of walks, running errands, going out for dinner at random odd times of the day to avoid crowds... all of which is so much more enjoyable when you can do it as a family!  I've been trying to get Lucy out of the house as much as I can on my own, which is a bit tricky now that she has a bigger stroller, we make sure to have all of her machines at the ready, and she herself is longer, heavier, and a bit more fragile.  Yesterday we went out and cut peonies in our front yard - simple, right?  Actually, it wasn't too terrible - just 4 trips in and out of the house to get her set up :)  We have yet to put a ramp on our porch, so things (Lucy included), essential things, must be brought out in several trips.  But I got it done, and Lucy got peonies for her room - they smell lovely!

Slapping the ants out :)

Sneaky little Bert with his photobomb.

Next up, as in starting tomorrow, is the Lucy's Hope for a Cure rummage sale, put on by the ever wonderful Marjorie and crew.  We are so blessed, and so grateful, to have a friend as tirelessly devoted to our cause as Marjorie is.  Her whole family is the bees knees!  And we would love to see you at the rummage sale, which runs from Wednesday through Friday - get the details here!  Half of the proceeds will go to the Gwendolyn Strong Foundation, and half will go to Lucy's addition fund.  Thank you to all who have donated, both items and time, to make this possible!

We are also counting down the days to our Links for Lucy golf event.  If you haven't registered to golf, or if you want to just come for the dinner and fun in the evening, there is still time!  Message me at for your registration forms.  There are still lots of slots open, and we are hoping to fill as many as possible for Lucy!

Toss in birthday planning that I was silly enough to leave until the month before the day, and I have a full plate!  We're keeping it low-key this year, because Miss Sassypants just gets herself all worked up the night before, doesn't sleep, and is then Miss Crabbypants the day of.  Hoping that a smaller party (and not telling her about it the day before!) will curb some of that.  I couldn't resist, though, and showed Lucy some of her birthday dress fabric:

I think she likes it.

That should have us all caught up!  I'm hoping to be able to update with lots of fun things over the summer.  After Lucy's events and birthday, we're looking forward to the 5th annual Par 4 Peyton, put on by Unite 4 Peyton - always a fun event!  Stay tuned :)