Tuesday, April 18, 2017

Updates, Golf and a Tooth Fairy story to make you smile!

I know I've said it before . . . that no news is good news but I'm not sure if it's actually that, or the fact that time keeps on whizzing by and before I can catch a breath, I realize too few pictures have been captured and it has been months since I've updated on Olivia.

My last update had us waiting on her culture result from her cf appointment. We received that back with good news that the klebsiella bacteria she cultured in December was gone with staph and normal flora showing up this time. Staph is not great, but given that there are far worse bacteria out there combined with the fact that Olivia consistently cultures it and stays asymptomatic for the most part, it's the best we can hope for.

Most of our time whizzes by with the day in and day out happenings; full days of school with evening activities and not a moment to spare inbetween.

In March, the kids had fun with leprechauns and rainbows as St. Patrick's Day is a favorite around here. The kids enjoyed a more "mature" scavenger hunt this year for their pots o' gold with brain
teasers to solve.

Lots of time has also been spent dirt biking by Jeff, Landen and Olivia. Both kids are getting a bit quicker and a bit more daring. Jeff has offered to get me a dirt bike, he did get me a moped to putz along with them which I do occasionally, but usually I choose to simply watch. I don't need another broken bone this summer! 
Olivia

Landen

At the end of March, after many months of cold, we were able to have our first campfire of the season. This has become one of the kids' most loved activities of the spring, summer and fall around here so it was fun to finally be sitting around the campfire again.


In the beginning of April the kids and I had our spring break from school, and it was glorious. We were able to slow down a bit and enjoy just being not busy. The kids did some dirt biking, playing in dirt hills, learned to saw wood for the campfire and I was able to build Olivia a bookcase for her room that she has been wanting to house her books and store her trinkets in for quite some time. She loves it and I was thanked and hugged many times over and over for making it for her.




We spent one of our spring break days at Split Rocks, with pizza, bowling and the arcade. The kids had a blast and made out great in the arcade with treasures to bring home. It sure was hard to get back in the groove of school after a week off, but at least we have summer break to look forward to and the countdown is on for that! 


Split Rocks had a photo booth, so we took a few photos. It's about impossible to get a family of 4 in a shot, thus the reason Jeff's head is mostly MIA in the photos, but none-the-less, a first for both Landen and Olivia and a fun keepsake to have.
For Easter we traveled to Grandma and Grandpa's for the day to celebrate with Jeff's side of the family. It had been a long time since we'd been there so it was a super fun day and the kids loved playing with their cousins again. Both kids are now anxiously awaiting our family camping trip when they get to spend countless time with their cousins enjoying the sun and the sand.


We are also eagerly awaiting the addition of a new fur baby to our family after saying goodbye to one of my best friends, Shelby, nearly a year ago. We are hoping to get a lab puppy sometime this summer if everything all works out. The kids can't wait to have a puppy and experience the joy that it will bring. Even though most all of the work of having a puppy will fall on me, I'm just as excited. Aside from the "your daughter has cystic fibrosis" diagnosis, saying goodbye to Shelby was one of the most heartbreaking things I've experienced in my life. No dog can ever replace Shelby, but my heart has room to grow and the joy and unconditional love and friendship that a dog offers, no doubt will be welcomed by all 4 of us.

With May just around the bend, Landen has a tae kwon do tournament coming up that he is looking forward to. Every Monday, Wednesday and Thursday since August, I sit in the parent section and watch him and he has really excelled and is doing a great job. He loves tkd and we love what he gets out of it along with the social interaction with other kids. I hope he is happy with the outcome of the tournament. Here is a photo of Landen at his last tkd test, where he had to break a board for the first time, I was impressed.


May 20th is the Dreams for Olivia golf event fundraiser. Jeff and I look forward to this yearly event and seeing many of our friends that we sure don't get to see often enough. It's always a good time and all for a great cause. Last year the weather was phenomenal and I hope that this year will deliver the same.

And on that note, I'll leave you with this Olivia story:

Yesterday, while Olivia was eating a caterbury egg, she had shoved the entire thing in her mouth and in the midst of it all her semi-loose tooth became very loose. All this while we were literally walking out the door for tkd! It was bothersome so I asked her if she wanted me to pull it out, she agreed and it came out quick with no pain. We quickly shoved it in the junk drawer and headed off to tkd.

Immediately upon our return back home Olivia dug the tooth out and ran it upstairs to tuck under her pillow. I of course, had forgotten all about it until Olivia reminded me at bedtime and I made sure she had it tucked safely under her pillow where it would be easily accessible by the tooth fairy without waking Olivia up. After binge watching a few episodes of Shameless (thanks to Uncle Mike for getting us hooked on this show😃) on Netflix and seeing the clock now read well past midnight, I proceeded to bed . . . and forgot all about the tooth.

This morning I woke up to two small voices. Landen saying, "Olivia, did the tooth fairy come?" I didn't hear Olivia's response but what followed from Landen was "What?!" Not even 10 seconds later Landen comes in bearing Olivia's tooth, in the baggie, with Olivia on his heels and proceeds to tell me that the tooth fairy didn't come. I quickly responded, "What?! Well tuck the tooth back under your pillow, maybe she'll come tonight." I felt awful and as I walked down to Olivia's room for an explanation I found her at her desk writing a note as Landen sat somberly waiting for her on the stairs of her bed. I told her, "You know what, maybe the tooth fairy didn't come because she couldn't fly in the rain, like Tinkerbell". As if a lightbulb had been turned on they both agreed that was plausible and smiles and light reappeared on their faces. I asked Olivia what she was doing and she handed me a note, I couldn't help but laugh. I told her that she had written a good note. She grabbed it from me, and said she had to sign it "June", her middle name as she couldn't fit Olivia on the paper. She then put it in the baggie with her tooth and tucked it back under her pillow.

The note . . . it's hilarious and 100% purely Olivia's attitude:


p.s. I hope the rain lets up and the tooth fairy can come tonight. She better bring something extra special. 😉


Friday, March 10, 2017

March 2017 CF Appointment

Last night as I was doing laundry, after I finally had the kids tucked into bed, I glanced at the tv and noticed that "Forrest Gump" was playing. It was just a few minutes from being over but I was immediately hooked and sat down to watch the ending. Jeff had joined me by this time and as the credits literally flew up the screen as the movie finished; it started all over again - I told Jeff to set the DVR and I'd watch it sometime, when I have a moment.

Image result for forrest gump

On the tv guide screen, it said the original air date was 1994, man did that make me feel old and seriously, Tom Hanks was a very young man in that movie!

I couldn't help but say aloud the infamous line from the movie, "Mama always said, life is like a box of chocolates, you never know what you're gonna get". Jeff said I pretty much nailed the southern accent, by the way 😊

I digress, but as I thought about that quote, I couldn't help but agree with it and how true those words are. It's funny because at lunch yesterday the kids and I were talking about planning out your life. I had told them there is a quote about telling God your plans and he'll laugh or something like that. I told them if they were really curious, they could Google it, but the point I was trying to make to them was that they could plan their lives and future out all day long but to be prepard for it to change. I told them that never had I planned or imagined that I'd be a stay-at-home mom; life changes. So it was rather ironic that on the same day this topic was our lunchtime conversation that this movie caught my attention.

 "life is like a box of chocolates, you never know what you're gonna get", - so very true.

On that note, never in a million years would I or could I have ever planned to include cystic fibrosis in my life, but none-the-less, here we are, day in and day out for the past 7 plus years swimming in the depths of it.

Life changes.

Olivia had her first CF appointment of 2017 on Tuesday. We had all planned to go to the appointment as Jeff likes to be at all of them with us to police the germ control portion of the day. I'm thankful for this because he's much better at telling people to back off, check themselves and ask questions if needed when it comes to protecting Olivia from germs. Unfortunately, as luck wouldn't have it, Landen had come down with a cold a few days prior so we decided it'd be best not to have the entire family of 4 all in the confinement of a small car for an hour and a half sharing germs. Olivia wanted me to take her and I wanted to take her as I've never not been to an appointment and she straight up told Jeff, "well, you don't know all of the stuff like mom does", touche young lady, touche.

I was very apprehensive about not going to her appointment for I've seen what is supposed to be a rather uneventful appointment turn into much more than that, such as the case in May 2016 when Olivia went in for a pre-op and ended up in the hospital for a week long stay due to her first cf exacerbation. However, at that time she was ill and had been for quite some time, so given the fact that she has been doing extremely well I told her that daddy could take her to the appointment, I'd inform him of what he needed to know to fill out the paperwork and that I'd stay home with Landen and teach him his school lessons so that by the time she got home I could work with her on her schooling. In the end she agreed, and her and daddy headed off to the appointment.

From the shortened recap I got, it went well. Her pft FEV1 values were above 100% and remaining consistent so that is a blessing. Her weight and height were up and her BMI for what has to be about the very first time was at the 51st percentile. Olivia said the nurse really jammed the swab into her throat for the sputum culture, which I agreed can't be fun but said that hopefully it means they got a good sample. Thus, we wait on pins and needles for the next week and a half, hoping and praying that no nasty bacteria shows up on the culture report.

Olivia has been doing well, so I expected it to go well but I never let my guard down as cf, can and will throw that curve ball.

Jeff and I can both tell Olivia has been doing great in the weight gain catergory, which just a few years ago were words I never could have imagined typing. Weight gain has always been her struggle. The g-tube certainly wasn't the fix all but it coupled with the periactin so that she actually eats, being healthy and Orkambi, all seem to be working in her favor as of now. Since she's been doing well we've been giving her one night off a week from the g-tube overnight feed. It's amazing how much Olivia and I look forward to this night. Olivia doesn't feel locked in her bed so after I tuck her in and she's done reading to me, I'll hear the pitter-patter of her feet and then not even a second later she'll join Landen and I in his bed as he reads his book to me. She giggles and bounces up and down, clearly overjoyed by this freedom from her machine. Such a small thing, getting out of one's bed easily, that most everyone takes for granted.

I look forward to this night off too because it's one less thing that I need to do in an already overly long and still growing list of things pertaining to cf care. Jeff once told me he needed a list for the night that he had to do Olivia's nightly routine when I was gone and I think it took him three times as long as it does me! Every night before I tuck Olivia in it's: snack with pills and Orkambi, mix up the miralax and adminiser via g-tube, do Olivia's nasal rinse and then get the g-tube feed ready and hook it all up. So it's one night a week that I don't have have to crush enzymes, mix formula, prime the machine and hook it all up with what is almost guaranteed to be a night of interrupted sleep as the feeding pump continues to alarm on and off from a squirmy little lady pinching the tubing. Getting the g-tube ready and hooking it all up doesn't take me too long anymore, afterall I've been at it for almost 3 years and can probably do it blind-folded but it's still one more thing to do before I get the kids in bed each night when all I really want to do is sit down at the end of a long day. Olivia reserves her night off for the weekend, usually Saturday night, which makes the weekend that much better! Olivia knows that in order to keep up the 1 night a week of 'g-tube freedom', she has to keep her weight up and keep eating well during the day and that at any time this can change.

Last week a nurse asked me as I rattled off this and rattled off that, how I did it all and who helped me? I told her no one, that I do it on my own with the ocassional help from Jeff when he's around but all in all it's me and that yes, it is a lot of work, but no, I'm not superwoman. I thanked her for telling me I am an amazing mom, but told her I'm just a mom, doing everything I can to keep my little girl around and that yes it's overwhelming and stressful and a lot to do day in and day out, but life changes, we adjust, roll with the punches and keep pushing on. Life . . . it really is like that box of chocolates isn't it?

And here's one for the road . . . I have to throw this out there, I cried when I saw it. I mean the one card on the refrigerator I'm pretty sure is from the first climb Cole did with us, that seems very long ago. This is from our good buddy Cole's refrigerator and all the drawings and cards he has on it from our family and the kids from over the years. I was utterly surprised that he still has things on there that were sent many years ago and I reminded the kids that it's the little things in life that mean so much, a drawing here a thank you card there . . .





Tuesday, February 21, 2017

2017 CF Climb: Team Olivia - Polaris

This means something . . .



and this means something . . .



and they mean something very, very important and special . . .

to this little girl:


and to this family:

To her,



it means hope,

it means inspiration,

it lets her know that she is not alone in her battle against cystic fibrosis,

it lets her know that these people are supporting the Cystic Fibrosis Foundation in her honor to find a cure for this disease.

It lets her know that on days like this,

and this,


and this,


that she is not alone.

Thank you often doesn't seem at all sufficient to express our deep gratitude to all of you who raise money, donate and climb with us to support the mission of the CFF on their quest for a cure. Your generosity and time that you give to the CFF does not go unnoticed. Each year our team continues to grow, each year Olivia has new supporters that join our bandwagon, learn of her story and are inspired to help.

Each year we sit down and go over our team roster and we go through our list of donors and the unbelievable amount of money that our team raises and we express our deepest gratitude. Olivia is now 7, she is knowledgeable beyond her age.

These pictures:
  

and the list of donors that I have her read, means something.

She reads through the list, views our climb for a cure web pages and studies the pictures. She asks about each and every person that comes to the climb and has donated to support her. She knows who her supporters are. She knows of those people who have been with us since the beginning of the climb and who are doing all they can to provide monetary support to find her a cure.

I'm sure it'll be weeks from now and Olivia will still be asking me about the climb, recalling the events of the day, remembering all the faces in the crowd that were there for her. She'll remember the amazing fundraising that we had going on from our team members and the 50+ climbers on our team. She'll no doubt recount this event for a long time and she'll recall the pictures and faces of everyone that was there for her and all those who gave generous donations on her behalf.

I pray, everyday, that we don't have days like this:


or like this:



or like this,


for quite some time, but to those of you, and you all know who you are, to those of you that support us and the CFF, please know that if when days like this do arrive,

Olivia will be reminded that she needs to keep pushing, keep pressing and keep fighting with all she can to beat down the beast that is cystic fibrosis so that she can celebrate with all of you on the day that a cure for cf is no longer a hope or a dream, but a reality.

Thank You.

Two small words, said with the deepest appreciation and gratitude to all of you that supported us in the 2017 CF Climb. 






So, without further ado, Thank You:

Christy and Eric - for carrying on the yearly golf event fundraiser to raise money for the CFF and to everyone who attended the golf event in May which allowed us to gift $4,600 to the CFF for our 2017 CF Climb!

To our 2017 Climb for a Cure climbers:
Tim & Niki
Larry
Loren
Jim, Sheri, Christoper, Callie, Nahum & Sarah
Darci & Braelyn
Grandma Pam
Clark
Joseph
Jeff D.
Gus
Cole
Glen
Gary
Lonnie
Jackie, Madison, Sydney & Zach
Em, Austin, Carter & Makayla
Amber, Emma, Mason & Matthew
Josh
Brian
Tyann
Kyle & Lisa
Collin
Jeff O.
Charlie & Elise
Michael
John
Corey & Jen
Justin
Tony
Miraj
Abhishek
Brad, Dylan, Karen and Kendall
Ron
Wolf

Clark D - for implementing the Polaris Beard for A Cure benefiting the CFF. I wish I had a close-up picture of Clark and his question mark beard, but of course I always wish I had more pictures of the event and am always too busy running around to shoot them. His question mark was epic but I do have photos of these two studs: Jeff with his monkey tail and Cole as BATMAN.

 

This Just In: thanks to Cole for sharing this picture, here's Clark: the Polaris Beard for a Cure implementer, with his Question Mark:


Cole and the Rocky Mountain Climb crew for literally climbing a mountain for Olivia. Cole the video you put together and the no small feat that your climb is, clearly means more than you'll ever know. Olivia literally means it when she says that her friend Cole climbed a mountain for her and that she loves him!



And finally, to our generous donors. All of you who give to the CFF on behalf of Olivia for this event, it is because of you that we were once again the highest fundraising team for the 2017 CF Climb, 4 years running, raising over $21,000 for the CFF in this event! Thank You!



Each year, Olivia and I hand write thank you's to send out. We've been diligently working to get them finished up and will mail them out this week.

Again, thank you will never suffice to express our gratitude to all whom give to the CFF. Cystic Fibrosis is a "rare" disease and the funding needed for research to produce new medications, therapies and ultimately a cure is so important and to be able to raise the money that we do to support that mission is incredible.

Our hearts are full of gratitude to all of you who supported us in the 2017 CF Climb.







Friday, February 10, 2017

CF Climb - Rocky Mountain Edition 2.0

It's no secret, Cole is one of my favorites.

I mean just look at this photo, and you'll see what an awesome, hilarious and likable guy he is!


From the very first day I met him, when Jeff literally gave me about an 1 hour notice that he was bringing him home for dinner, messy house and all, Cole became an instant friend. He's one of the most likable guys, he's funny as all get out and Landen and Olivia love him. Cole is just an all around great guy and one that Jeff and I feel very fortunate to call a great friend. Every year, he continues to amaze us by his generosity and awesomeness!



Last year, Cole and Amy climbed a mountain in Colorado beings Cole's geographic location didn't allow him to do the IDS Climb with us. A donation to the CFF in lieu of being able to climb would have more than sufficed, but Cole decided to "Cole it up", go bigger and better and climb a mountain. He made a great video of him and Amy climbing and the feat that they tackled in honor of Olivia was beyond amazing. Olivia still talks about how her friends Cole and Amy climbed a mountain for her.



This year, in 2017, Cole, Amy and others are back . . . climbing a mountain to raise money for the CFF in honor of Olivia. The amount of money this crew raised is awesome, over $1000, and the mountain they climbed in the conditions that they did, is beyond imaginable for me, and yet something that I can understand poses dangers and is not an easy or quick climb. The time the Rocky Mountain crew dedicated to this climb is without a doubt a huge display of how gracious and giving they are. A big thanks to the entire Rocky Mountain Climb team 2.0, for your support of the 2017 CF Climb, for joining in the fight for a cure and for making a little girl feel on top of the world that she has friends in high places, willing to do what they can to make a cure for cf a reality for her and all those living with this disease.

Here's the video for the 2017 Rocky Mountain CF Climb 2.0 that Cole put together:



We have many things to be grateful for, both big and small and as Febraury rolls around with the climb, every year we are reminded that we are not alone in this fight, that we have many great friends and supporters that are treking this jouney along with us to bring this disease to a hault and cure it.

The kids and I strive to find gratitude in every day, today our hearts are overflowing as we are grateful for all of our CF climbers, all of our donors, Cole and the entire Colorado climbing crew. It is because of all of you that we continue to hold on to the hope that a cure for this disease will be found and that we are helping to fund the path to get there. For Olivia to see what others are willing to do to raise money to find her a cure, I have no doubt it gives her the strength and determination to continue to do all that she can in order to be around to be gifted it.

A very big thanks to everyone who supports the CFF, to everyone who is joining us in the 2017 CF Climb and to the Rocky Mountain Climb crew for climbing a mountain to cure CF.

Team Olivia-Polaris is crushing it and holding onto 1st place for the highest fundraising team for the MN climb and we are currently #3 in the nation! So very awesome! Thanks to everyone who joins us in this fight and stay tuned to next week's blog post for photos of the IDS climb, results, beard photos . . . lots of good stuff.




Tuesday, February 7, 2017

2017 Climb for a Cure - See you Saturday!

The 36th Annual Minneapolis CF Climb & Run
Saturday, February 11th, 2017
9 am to noon

A few reminders for Team Olivia-Polaris:

1. We will meet in the Crystal Court of the IDS Tower a little before 10:00 am for a quick large group photo and a Team Polaris photo prior to climbing as a group. 

2. Climbers should check-in at the registration desk prior to climbing.

3. Landen and I will be climbing before the large group in order to be with Olivia while the team climbs. My mom and I will be available to help watch over Team Olivia-Polaris climbers' belongings during the climb for those who wish for us to do so.

3. The CFF has gone cashless: please turn any off-line cash donations into a check(s) before turning them in on Saturday morning.

4.  To all of our virutal climbers, registered climbers, (both near and far), and our donors, thank you for the continued support of the CFF. Jeff and I will fundraise with passion until a cure for CF is found and we could not be successful without the help from all of you. We are forever grateful and sincerely thank you from the bottom of our hearts. 

5. Last but not least, please join us at Rock Bottom after the climb for our annual celebratory group get-together. 

Thank you for your support, we look forward to seeing you all on Saturday.

*To my dear friend and fellow cf mom Lindsey, on Saturday I will not only be climbing for Olivia and all those with CF, but also in honor of your mother. Blessed be the memory of Mary Wherry and her passion and dedication to finding a cure for Briley and all those with CF.