Saturday, December 5, 2015

Aloha Hawaii!

On November 14th, we set off for a week long trip to paradise.

My mom took my sisters, myself and our family's on the trip of a lifetime . . . to Hawaii. It was absolute bliss. It was such an amazing trip, full of beautiful weather, tropical breezes, breathtaking views, great memories and treasured family time.

It was a 9 hour nonstop flight from Minneapolis to Honolulu, and surprisingly the kids did very well. Thanks to the age of electronics, their tablets kept them well entertained as did the in-flight movies, some games and coloring projects they had along for the flight.

The worst part of the airport and flight was passing through TSA with all of Olivia's medical equipment, but having a previous airport trip now under our belts, all in all it went much smoother this time. However, the line was so long and slow as it just so happened our plane took off the day after the attacks on Paris, thus slowing things down. No worries however, we made it to our gate, with about 10 minutes to spare until boarding!




Warmer weather awaits just outside our window!

We began our adventure in Honolulu. Not quite like it's depicted on television, as we didn't get lei's when we landed so Daddy bought his two girls each one - made our day! 



We spent 3 nights at the Hilton, Waikiki. It was a gorgeous hotel and the onsite pools and ocean views were amazing. We enjoyed much of their time swimming in the ocean and walking along the ocean shores. 




Jeff and I wanted to try our luck at surfing. We headed over to Waikiki Beach on our second day, rented a few surfboards and headed out. Unfortunately, we only had an hour to do so and the waves didn't cooperate so we didn't have much luck. It was still super fun to try and be out there in the ocean and we were grateful we didn't come across any sharks along the way.


The kids had even more fun than Jeff and I "surfing" and were pretty proud of themselves! I absolutely loved Olivia's "I'm doing it" face in this photo.






We toured Pearl Harbor on our last day in Honolulu, and had a great history lesson in doing so. This was more for us adults but the kids did well and were very respectful. My sister Amber and her husband Ryan did the land and sea tour and were able to view much of the island by helicopter, capturing some amazing photos.







After 3 days in Honolulu, we jetted off to Maui for the remainder of our stay.


Maui was equally amazing and a bit more slow paced and relaxing, the perfect way to finish off an unforgettable trip. We rented a condo in Maui - Kahana Outrigger, which was grand. All 9 of us were able to stay under one roof together and it was much more chill and relaxed with incredible ocean views and breezes right off of our lanai.


View from our condo - Kahana Outrigger
On our first full day in Maui, Landen, Jeff and Ryan got up early and went on a bottom fishing trip. This fishing trip is what Landen was most excited to experience while in Hawaii. The trip sounded incredible; they saw a whale, sharks, caught some fish, spotted Jon Jon out fishing from the Discovery television show "Pacific Warriors", absolutely amazing! I wish I could have been along to experience in Landen's joy, but I knew Olivia wouldn't tolerate the trip so it was a "boys only" morning while us girls headed to Front Street in Maui for some shopping. 




The whale they spotted from the boat.



While shopping us girls found some great souvenirs and enjoyed lunch dining on seafood along the ocean shore.








Much of the rest of our time in Maui was spent relaxing and enjoying the ocean:


Jeff rented another surf board while in Maui but there were no waves to surf on, maybe next time . . . if there is a next time.


The kids loved the body boards that our condo had for use. They spent a lot of time on these.



Landen's body board doubled as a collection site for all his rocks and shells.



My sisters and I decided to go parasailing on one of our mornings in Maui. We went to Kaanapali Beach. Darci and Amber were legitimately scared, I had a blast!




Due to heavy rains on the last two days of our trip, our Luau was canceled as was the helicopter tour my mom and sisters were going to take of the island. Kind of a bummer, but hard to be down about much when you're in Maui, especially given the what the weather was like back in Minnesota!





Since we were all dressed up in our Hawaiian gear for the Luau, which was canceled, we braved the rain and headed over to the Sea House restaurant and enjoyed a huge seafood meal with lava flow drinks. It was delicious!

Landen and Jeff took a stroll along the beach in the rain on our second to last morning in Maui and Landen found a coconut. He was pretty pumped about this and later asked if Jeff would open it up. Man oh man, the sight of Jeff and Ryan fighting with that silly coconut was absolutely hilarious. Jeff finally did get the thing open, by smashing it on the ground and from what I hear, it wasn't worth it as this particular coconut had no taste. 


On our last evening, Amber and I headed over to Soular tattoo shop in Maui to finish off our trip with some fresh ink. 


It was definitely a trip I'll never forget, such a beautiful place, such awesome memories. Thanks mom we had an absolute blast!


Hawaii 2015








Wednesday, December 2, 2015

November CF Clinic Visit

We started November off by heading down to CF Clinic for Olivia's follow-up visit. She began the morning by completing her PFT's. She's getting the hang of how these work now so the data they get from her is proving useful as another tool to be used in her CF care. Her readings are right around 100% for the values they measure so we are happy by this.

The sputum culture continues to be a cause of anxiety for Olivia so she chooses to do this right away to get it over with. Once it's done, she's much more relaxed and it makes the rest of the appointment go that much smoother.

This was one of our better appointments, since Olivia has been doing well. She's tolerating her g-tube feedings with the method we are using and since the onset of school her anxiety has decreased a ton so things are going well. She has gained an impressive amount of weight over the past 3 months as well as grown taller. Her BMI is near the 64th percentile and her height is near the 74th, which we are extremely pleased with. Because of this, her enzyme dosage was increased quite a bit but other than that, we are to keep on doing what we are doing.

Her growth is a direct result of the use of periactin combined with her nightly g-tube feedings. Now that we are able to keep the feeds down and she is tolerating them, things have improved for her so much. Our GI doctor told us that the periactin helps to open up the stomach so it empties quicker, thus increasing ones' appetite, which has always been the case for Olivia but it also helps in how well she tolerates her g-tube feeds. When she's taking the periactin, we are able to up the rate even more and she tolerates it well. Using a full does of mirilax every day to help prevent blockages has also been another piece to the puzzle that has assisted in how well Olivia's been doing over the past 3 months. It's nice to finally have some things figured out and working . . . at least for now.

Her sputum culture reported a moderate growth of staph which is typical for her and we continue to thank the Lord that she hasn't grown pseudomonas or b.cepacia as of yet.

We were able to get Olivia enrolled in a 24 week CF research study that we are excited about. I can't share specific details but we have our fingers crossed on the this one and are thankful to be able to partake in it. This will kick off in January.

In other November news, Jeff and I celebrated our 10-year wedding anniversary on November 8th. We were able to go out for dinner to celebrate which was wonderful. A big thanks to Aunt Darci for watching the kids. We also got to celebrate in Hawaii for a week thanks to the trip my mom took our family on. A true paradise . . . more on that to come!


Tuesday, December 1, 2015

Catching up . . . Halloween 2015

It's no secret, we enjoy Halloween at our home. Annually we trek to the local pumpkin patch to pick out our perfect pumpkins and the kids have a blast, and make quite a mess, carving them!



Olivia is fond of wolves and has been for quite some time. She calls them her "wolfie babes", so she chose a wolf face to carve into her pumpkin. As comes with age I suppose, Landen was into all things creepy and crawly this year. He chose the Ghost Face from the movie Scream, which he's of course never seen, to carve into his pumpkin. He also chose the Ghost Face for his creepy Halloween costume. He was going back and forth between that or a zombie, whichever one was more scary and Ghost Face won. 



On Halloween day, we started the day off by having a Halloween themed lunch and bash with Aunt Darci and cousin Braelyn. We all dressed up in Halloween costumes. Landen as Ghost Face and Olivia as none-other than a wolf. I dressed up as a vintage or 50's housewife; something along those lines, although Darci thought I ended up looking more like the late Amy Winehouse . . . Braelyn too was into all things creepy this Halloween and was an evil jester and Darci was a football player. 


Around dinner time, the clouds broke, the rain passed and the sun began to peek out. Jeff, I and the kids packed up and headed over to Aunt Em and Uncle Mike's for some trick-or-treating fun. The neighborhood in which they live is great for trick-or-treating. Many neighbors go all out with the Halloween decor, tricks and treats which makes it a fun environment for kids and adults! Landen and Olivia had a blast playing and trick-or-treating with cousins Austin, Carter and Makayla. 


Landen's costume came with a squishy heart that pumped fake blood through the mask, making it that much more gory which continued to baffle my mind on how he's grown up to be at this stage, where this is cool - way too fast!



Creepy Cousins - Austin's Zombie and Landen's Bloody Ghost Face


One last look at a "wolfie babe" for the road!



That's a Halloween wrap for 2015. 
Lots of fun, too much candy with most of it being thrown away and great times and memories made with family!



Monday, October 12, 2015

Olivia's 6th birthday, pumpkins & Kitty

Olivia celebrated her 6th birthday on October 1st. What an amazing day . . .



She was the snack helper for her class, bringing in special treats in honor of her day. She also got to wear a birthday crown for the entire school day and was the "line leader". I happened to be at school volunteering and when I saw her, she looked so happy. She absolutely loves her teacher. I refer to her kindergarten teacher as "Olivia's security blanket" at school, just as I am her security blanket at home, so getting to lead the class line and hold Mrs. H's hand, I'm sure she felt so proud.


After school, I picked the kids up and we raced home to change, let the dog out and have a snack and then we were off for bowling, arcade and pizza.


Olivia had been, for weeks, talking about how excited she was for pizza and bowling. We bowled 2 games, and then headed into the restaurant for the long awaited pizza party, followed by the arcade.



The kids had an absolute blast and Landen even beat me in both games of bowling. Now, either I'm just that bad, or he's pretty good! Once we arrived back home, we headed down to the movie room for presents and cupcakes with a 1 Direction themed birthday party.




We gifted Olivia with her very own iPod for her birthday. Jeff has one that he uses out in the shop and that was her thing to do, her way of "helping Daddy" out in the shop. Jeff would be working away and Olivia would be tending to the playlist, which is always One Direction songs, played over and over again. I joked with Jeff after we had tucked the kids into bed for the night that now Olivia would never want to be out in the shop since she has her own iPod now! Little did I know, a new reason for Olivia to spend time in the shop would arrive a few days later . . . 

After the fun, Olivia did her evening treatment and fell asleep as soon as her head hit her pillow. As I tucked her in, she sleepily looked up at me and said, "Mom, that was the best birthday ever". Indeed baby girl, it was.

So much has happened in 6 years. From where our journey started to where we are today . . . it baffles my mind sometimes.  Every birthday, every year is so special. Six years ago, I honestly didn't know what our lives would look like in 6 years. I had no idea what cf would be like for Olivia and on her 6th birthday, it was pure joy. Jeff, Landen and I reveled in the excitement with Olivia and honestly, there wasn't one thought about the what if's or the tomorrows or anything relating to cf. It was all about living in the moment and enjoying every bit of the day.

Now as I sit here and think about how far we have all come in 6 years . . . I'm truly amazed. The things we now do, the places we now go are so much different than the isolation we lived in and with those first years of Olivia's life. I'm so proud of all of us for getting to a point where we can live and let go and just be, and be content and satisfied and happy with that. It hasn't been easy, there have been many ups and downs, trials and glories, but we are all here and all together; thus life is good.

I'm so thankful for the amazing 6 years Olivia has had. Yes, there have been ups and downs with Olivia's health, but all in all, things are pretty good and I always know, could be much worse. Her lungs are still healthy and without nasty bacteria and for that, we couldn't be more thankful. Her weight has reached a good, healthy point, where in the past was a tremendous, never-ending struggle, she goes to school, which in-and-of-itself, is an amazing accomplishment of us letting go. She's happy, she's growing up, she's becoming the person she was meant to be . . . the list goes on and on.

Jeff and I are so proud and so thankful and blessed to continue this journey together as a united force, raising our amazing daughter and son.

Happy 6th Birthday to you Olivia, we love you so much!

In other October happenings . . .

a week ago today, I was cleaning the house and heard a very loud meowing. I stopped and listened, and began to search around the house for one of Olivia's FurReal toys that might have been left on. I found nothing but as I got nearer to my front door, the meowing became louder. I peaked out and here on my front step was a tiny little kitty sitting at the door meowing.

Now, we have a dog, a big dog that hates cats. I knew I couldn't bring the little thing in so I closed the curtain and pondered what to do next. In the meantime, this kitten really wanted in as I heard scratching, looked back out and the tiny critter had proceeded to climb to the top of my screen door.

Not wanting her to wreak havoc on anything else and/or shred the door, I went outside. She came right to me and began to purr and purr. Her little chin was bleeding but otherwise she looked in good shape. Kitty was clearly not leaving so I took her down to the shop, made her a home, got her some water and food and set out some litter . . .

and now a week later, it's her home. We've named her "Kitty" and she loves Jeff's shop. So many places to hide, so many trinkets to bat around on the floor. It's her home and she loves it. Over the weekend, she'd venture out a bit to play outside and then as soon as she'd get spooked she'd race right back into the shop. The kids are thrilled. Olivia has always wanted a cat, and she now has one. Kitty has touched all of our hearts and even Jeff is coming around and likes his new little friend, as long as she stays out of trouble in the shop, so far, so good!

I introduced Kitty to the kids on this day after school . . .



Olivia said, "My wish came true!", and she reminds me daily how much she loves Kitty and now she has another reason to spend countless hours out in the shop, helping Daddy!

Last week we took our annual trip to the pumpkin patch. It was cool and damp but the kids loved it all the same and it didn't take them long to pick out their perfect pumpkins.



Halloween, is right around the corner and it's one of our favorite times of years. We have a cute wolfie and a scary Ghost Face this year.