Friday, December 13, 2013

Happy Holidays!

Only 12 more days until Christmas . . . and it can't come soon enough, mainly because the kids ask me everyday, "Is it Christmas yet?" and "Can we open our presents?", which lets be real, gets old fast. But, the other reason is because this year as the kids are older and understand more there is to know about life, our Advent Calendar this year has focused on Jesus and the true meaning of Christmas. Landen is so excited to first and foremost wish Jesus a Happy Birthday come Christmas morning and that makes me joyful. Just yesterday he asked if we were going to have a cake for Jesus' birthday to which I responded it's a surprise, but I love that our Advent activity for December 25th just so happens to be to wish Jesus a Happy Birthday and celebrate w/ cupcakes, I guess he and I think alike.

I love that the kids are willing to learn about faith and the Lord and understand that this is just a part of our journey and that regardless of our life here, we will live eternally with Jesus in heaven. Having a child with a chronic disease and a 6 year old who is beginning to ask more questions about it, I want them to know that death doesn't bring the end, but the beginning of a whole new life with Jesus. Of course I wish for us all to live a long life here together but I also know that for anyone of us, regardless of a disease or not, each day could be our last, so I want them to learn to live each day to its fullest and never be afraid for what tomorrow may or may not bring.



As all of our Christmas gifts are bought, most are wrapped, with a few yet to arrive by mail (love shopping amazon prime!), the ground is covered in snow and the joy of Olivia serenading me with Christmas carols daily, I am definitely in the Christmas spirit. The kids are too, they have enjoyed donating their old toys to charities and giving new toys to programs for other children. The selflessness they can display makes it that much more special for them to receive new toys on Christmas morning. Of course Olivia's wish is for another trip to Disneyworld, which I tell her will happen again someday, so she decided instead to ask Santa for a princess toy and Landen asked for a lego set. I told them they could each ask for one thing from Santa and that was it. Luckily this year, Santa was able to find the requested toys so the kids should be elated come Christmas morning. Santa even found Disney Princess and Angry Birds wrapping paper so the kids will be able to easily distinguish which gift is theirs - Nailed It! My favorite part of Christmas is the joy of watching the kids on Christmas morning and the memories made, so excited for that.



As the year dwindles to an end, I can't complain a bit. We had a great year, we were fortunate to do many fun things, and despite all CF throws at Olivia everyday, she's doing well. Landen is growing up more and more each day and we are all surviving kindergarten and the newness of having him be exposed to so many kids everyday. It's been a year of trials, triumphs and of course learning as we go. Happy Holidays!




Tuesday, November 12, 2013

Halloween & November Clinic visit

So much to update, so little time, things never seem to slow down around here and there is always something that needed to be done yesterday it seems . . . such is life.

Anyway, a recap of Halloween. The kids had seriously been looking forward to Halloween for so very long. In fact, Landen and Olivia had picked out their Halloween costumes last spring when they were on clearance. I was a little leery about letting them choose them so early knowing how quickly the likes and dislikes of a 4 and 6 year old can change but at such a deep discount, I figured it was worth the risk. So last year, when Landen decided he wanted to be an Angry Bird and Olivia chose to be Ariel I figured we'd be pretty safe with their choices, given those had been some of their favorite characters for quite some time.

The weekend before Halloween, we had our annual Halloween party, just the 4 of us. The kids loved it, they dressed up in their costumes, we had spooky Halloween food and treats for lunch accompanied by the Monster Mash. We all wore a costume, including Shelby our "skeledog". Jeff was Dexter Morgan from the tv series Dexter and I was a LA Ink pin-up girl. (Jeff and I had a costume party to go to later that night where we dressed up as Dexter and his victim. We love the tv show Dexter and after doing some Googling of couple costumes thought this would be fun - it was and our costumes were definitely the talk of the party).


Dexter & Victim Couples Costume
Our Dexter costumes: Jeff as Dexter and I as the victim Dexter style (wrapped in plastic, knife stabbed into my torso and the cheek cut for Dexter's blood slide)

Both Landen and Olivia were super excited a week later when they got to put on their costumes again and head down to Polaris for trick-or-treating and lunch with Daddy. They always get a lot of candy from this and it's all inside which was super nice due to the rainy, cold and dreary day we had here.


Next up Landen had school and then afterward we headed over to Aunt Em's and Uncle Mike's so that the kids could trick-or-treat again this year with their cousins Austin, Carter & Makayla. They had so much fun despite the icky weather and scored a lot of treats in their candy bags. I loved seeing Olivia run down the street after Landen and her cousins with her monstrosity of a wig flopping behind her. It was so sweet. Seriously though, that wig used to be nice but after repeated use of it daily during the month of October as Olivia continued to dress up as Ariel, it had definitely seen it's better day and was beyond any help by Halloween night. Olivia however, didn't mind one bit and it was still effective for her Ariel costume.

Happy Halloween 2013!

Last Monday, we had Olivia's follow up visit at CF clinic. All in all it was a good appointment, she didn't gain but a mere few ounces from 3 months ago but given all the illnesses she's had and the weight lost encountered as a result, everyone was satisfied that she had bounced back to where she was at and was pretty much holding steady in the weight category. She did grow a bit taller and even with the lack of weight gain and her increase in height, her BMI was still in the 36th percentile. Given that she wasn't even on the charts at one point for her BMI because it was so low, I'd say we are definitely on the right track and she's doing pretty darn good. Of course we will now wait for her sputum culture results and pray that they come back okay. Aside from that we will keep on doing what we have been doing and return in 3 months.



We did find out at clinic that our dietitian is retiring. This made me tear up big time. Kathy, our wonderful dietitian has been with us since the beginning of this journey and because Olivia's weight has always been her biggest struggle, she is the one person at clinic that I see and talk to the most often. In fact, for the past 2 years I have been talking to her or emailing her weekly as we keep a watchful eye on Olivia's weight and make adjustments when needed, pulling out all of our tricks to get Olivia to gain weight as best we can. She's the one person who cheers with me every week when Olivia is heading in the right direction or offers encouragement and support when the scale isn't in her favor. Truth be told, our team at clinic is more like family than medical providers and we certainly see them more often than we do some of our family. They are all like an extended family really, there to help, support and watch Olivia grow and do everything in her best interest to give her the best outlook possible, just like we are. Yes, Kathy will surely be missed at clinic and I will definitely miss my weekly correspondences with her but of course I gave her a big hug, or two and as we both teared up and said our goodbyes, I could do nothing but thank her for everything she's done for us and wish her all the best. Her replacement will definitely have some big shoes to fill.

That's it for now, next up is Thanksgiving and the kids have been very busy making turkeys and hanging up other Thanksgiving decor to spruce up the house. Now off to the kids and the never ending to do list of all things that I should have done yesterday, last week . . .

Wednesday, October 23, 2013

Ramblings

Sometimes, when I'm watching Olivia do all the things 4 year old girls do, when CF is under control, not at the forefront of my mind and things are going okay, I look at her and for just a mere second, I ask myself if CF is nothing but a dream. Those moments are bliss. I look around at my surroundings and question if this is really my life. I try to think back to what my life was like 5 years ago, before Olivia was born, before I knew more than I ever would have wanted to know about CF, when things were so much more carefree and well, . . . easy. As much as you don't want your mind to wander into certain areas, sometimes, at least for me, it can't be helped, so it's in those moments where I find myself wondering, questioning what it is our lives would be like if CF wasn't at the forefront of it. What would it be like if CF wasn't the factor that is driving every decision I make?

There isn't a minute, a day, a year that has gone by in the past 4 plus years that I wish Olivia didn't have to go through everything she does because of CF. Not a second goes by that I wouldn't take the disease and place it upon myself or give up my life, if it meant she could live one free of this disease.

I often forget, for lack of a better word, that the pills with every snack and meal, or the 2 to 3 treatments she endures every day, the neb cups I continually fill up with meds, the doctor appointments, having a medical and pharmacy team feel like part of my immediate family, aren't "normal" things. CF however, is our "normal", but it's easy to forget that it's not everyone's "normal". I didn't welcome it in, I would have loved to slam the door in it's face to keep it out but none-the-less, it made it's way into our home, it's integrated into our lives, for as much as I despise it so many days, it fits in. It's a never ending learning process, one we must work at all the time, but we've adjusted, we make things work, we do what we have to do each and every day to fight this disease that certainly doesn't define for a minute who my daughter is or who we are, but is a part of her and of us as a family.

CF can steal so much. Not only does it forever alter ones body, but it also changes a persons mind, their way of thinking, how they see the world. I hate that neither Jeff nor I will ever see so many things that are "normal" as anything but a possibility for germs or bacteria to be lurking in the background. No, it certainly isn't enough that CF wreaks a whole heck of a lot of havoc on the body, but it also takes a huge toll on all of our minds, our brains, that which makes us who we are. Yes, we are forever changed. Yes, some of it is for the worst, but also some for the better.

Do I hate that I will never again feel completely comfortable taking Olivia into a large gathering situation because of the potential possibilities of bacteria, viruses and germs making their way to her? Do I hate that my life is so focused on infection control that the mere joy of what should be happy things is often lost? Yes, there is no doubt. But, . . . when I put all that aside, I know that I am not who I used to be, 5 years, 4 years, even 1 year ago. I've changed, it's inevitable. I'm a mom, a wife, a primary caretaker of a daughter with a chronic disease, there are so many hats I must put on each and everyday. But through it all, the transformation I've undergone has been nothing short of eye opening.

My 4 year old daughter has taught me more about the important things in life, in 4 short years compared to my other 29. I know that each day we are here is truly a gift. I know that life is too precious to simply let the days slip into months, into years without making the most of them as best we can. I know that we don't have time to waste fretting over insignificant, petty things. I know and have seen that life is not fair, but I believe that God has a plan for all of us. I've learned to appreciate the little things, to hold onto hope with the biggest bear hug ever and to never let it go, to be realistic but also to never lose my optimism. I know that we need not put off until tomorrow what we can do today because tomorrow may never come. I know that for the past few months now, that each night as I read Bible stories to Landen and I try to teach him about God, that not only is he learning and putting together the puzzle pieces of life, but I too am reminded of what's important and of what lies ahead for us after we are done here.

Thus, as I've been reading about the not as promising as we had hoped results from the VX-809/Kalydeco study for DDF508 CF mutations, it's a bit heartbreaking. We wanted more, we wanted the miracle drug for Olivia that some have experienced with Kalydeco. It's sad, it's scary. Time is not on our side when it comes to the progressive disease that is CF. To wait, months, years, an unknown amount of time for that cure, is not what we want to hear especially in a time when things are hopeful and encouraging with the research. But all hope has not been lost, we will continue to fight, continue to fundraise, continue to do all that we can for Olivia to keep her as healthy as possible until the day comes when her miracle drug arrives, because through it all, I believe we are closer than we've ever been, I really do believe the cure will come. We mustn't forget that even though our cure hasn't made it yet, there have been so many before us that have laid the groundwork to get us this far, where the cure is just lurking on the horizon. Thus we will continue to do everything in our power to advance the research to go even further. And in the end, like I told Landen last night, as hard and as sad as it is to know that our humanly bodies will die, our souls will live forever in heaven. He smiled back at me as I tucked him in, no doubt satisfied by my answer that no matter what life holds in store for us here, we will all be reunited in heaven for eternity. This I do believe, this I do hold on to.

So to answer my own question. No. I know CF is not a dream, it's a part of our lives, it aids in defining who we are, it has shaped us into knowing, believing and seeing with our own eyes, what life truly is all about, whats important and how precious our time together is. Do I wish CF was a dream, that the suffering, pain and lives lost all too soon to it were nothing but a figment of my imagination? Most definitely, but not for one minute do I wish to go back to the person I was before we accepted CF into our lives. Yes, our lives are often difficult, yes we have more to do each day in terms of health than some, yes the idea of a life cut all too short is always in the back of our minds, yes we know that CF is a chronic, progressive disease. But for all I've gone through, and for all I continue to trudge through on this journey of mine, of ours, I wouldn't for a second change what CF has taught me, the doors its opened, the people I've met and now call friends.

Just a few weeks ago, our family had the pleasure of being interviewed and video taped, (the kids refer to us now as movie stars), for a fundraising campaign through Jeff's work. We were honored to share our story, to offer thousands of people a glimpse of our lives with CF and to speak about the importance of charity in general and donating to a cause to help others if you can. In turn, since we were specifically advocating about the remarkable foundation that is the CFF and that we channel our donations to it, we were pleased, honored and grateful for those co-workers that chose to elect the CFF as their charity of choice through this campaign. To be able to inform others about CF, share our story and the importance of donating to charity, we were honored and feel very blessed to spread the word about this disease and the foundation that hits very close to home. Yes, there are definitely many things that are not great about CF, there is no doubt, but to be able to open doors for others to learn about the disease, take action and help us reach our goal of a cure for Olivia and all those with this disease . . . amazing.


Thursday, October 3, 2013

Happy 4th Birthday Princess

Olivia turned 4 this week, how did that happen?

We had a party fit for a princess, Princess Ariel to be exact. Back in February when we went to Disney World we had so much fun and the impact the trip had on Olivia was obviously nothing less than unforgettable. As most 4 year old girls are, Olivia too is in complete awe with the Disney princesses, most of all Ariel. Knowing her love for the Little Mermaid, Jeff and I decided to have a Little Mermaid themed party for her celebration. Each of us dressed up as a character from the Little Mermaid. Dad was King Triton, Olivia was Ariel, Landen was Flounder, Shelby was Sebastian and I was Ursula. After spending countless hours making the costumes for each one of us, I think I was just as excited as Olivia, if not more, for birthday party day.

In honor of Olivia's big day, each one of us dressed up in our costumes and everyone, the dog included, tolerated the photos I insisted we take. We ate yummy under the sea party food topped off of course, with a huge Princess Cake. Presents, games and watching the Little Mermaid completed our day. Olivia loved it and she continues to wear her Ariel costume each and every day. During her countless hours of treatments, more than 1.5 hours/day lately due to illnesses, she often picks the Little Mermaid to watch and it is the most precious thing, as each character comes into scene that one of us dressed up as, she'll say, "There's me . . . there's Dad . . . there's Landen . . . etc. I love it and I love that through this party we were able to make her dream of being Ariel the mermaid come true, even if just for one day.

Shelby as Sebastian, Olivia as Ariel (with a mermaid tail) & Landen as her best friend Flounder. 

As I wrap my head around the fact that Olivia is a preschool age little girl now, no longer a toddler, it seems unreal that four years have passed in the blink of an eye. I can recall memories of her as an infant, a crawler, just learning how to walk, each one so vivid that it doesn't seem possible she is already 4. None-the-less, here we are, 4 years later.

A walk down memory lane . . . 






White Kitty had to make an appearance at the birthday party as well, complete with her very own party hat.

Olivia has grown up a lot and continues to develop and grow into the independent little lady that she is. As I already stated, she absolutely loves everything Disney Princesses, most of all Ariel. She can spend many hours each day, happily playing with her princess dolls in her room. She loves to color and paint and has decorated her bedroom walls with all of her Princess masterpieces, almost to the point of pure and utter chaos. She loves to be outside; riding her princess bike, running around, playing on the swing set, digging in the sand or driving her Barbie jeep around with Landen. Big brother Landen continues to be her very best friend and even though they butt heads often enough, the joy and love they share for each other far outweighs the times when they don't get along. 

We are beyond blessed to have this little princess in our lives. We cherish each and every day with her and thank the Lord for the blessings he's provided over the past 3 years and we pray that her 4th year will be grand and full of many positive things. Happy 4th Birthday Little Princess, we love you!

Thursday, September 19, 2013

Updates

Let the fun begin . . . or not. We are now in our 3rd week of school. Landen ended up getting a cold the first day of school, (no big shock there), and was sick before the first week's end. He was really hard on himself about it and feeling down and both Jeff and I decided to let the kids be kids. While adhering to our infection control practices without being overly neurotic about them, we did the best we could all while letting Landen and Olivia be the best friends that they are, playing and laughing and doing most everything together. We had hoped that since Olivia is almost 4 that maybe, just maybe, this time she wouldn't end up catching the cold too, since she doesn't put her fingers, toys or what-have-you in her mouth anymore, but not the case. She ended up sneezy, stuffy and sick 2 days after Landen. We weren't surprised but we didn't beat ourselves up either. After all, it was just a head cold and no matter how many times in the past we have tried so very hard to keep the kids from sharing germs, our efforts have only paid off about once, so we decided to not make a big deal over it. After all, I firmly believe that having the kids share a few germs now and then is far better than having my 6 year old son, depressed and in counseling because he emotionally beats himself up every time he gets sick, thinking it's something he did wrong. Both Jeff and I talked to Landen and told him how much we love him and that we are never mad when he gets sick and that it's never, ever his fault. We told him that some times  in life you can do everything right and it still isn't good enough. Landen knows to wash his hands before he eats and to not touch his face or mouth so it's not necessarily a lack there of that is causing the illnesses. Who's to say a friend won't sneeze right on top of him, and really, how do you prevent that, they are only 5 or 6 year olds, some things we just need to let go and not fret over.

It's been 4 years, Jeff and I have walked this path before and we are learning to let go (somewhat) of things we can't control and focus on those we can. Kids get sick, I've said it before, I'll say it again, it's going to happen. Yes, it's a bit more frightening, well a lot more frightening, when Olivia comes down with something but we also can't live our life in fear or by having the kids think that they did something wrong by getting sick. It's an adjustment, CF is a life changer and even though it still seems that we are overly neurotic when it comes to germs, Jeff and I are getting better.

It's been 12 days since Olivia got sick, 12 days of doing treatments 3 times/day. She was stuffed up and lost some precious weight but thankfully the cold stayed just a head cold and never settled in her chest. Thankfully, she is better now and was very delighted when she could breathe through her nose again yesterday. I hope we can keep the kids healthy for a little while and that they didn't get over this one just in time to catch another.

We're still adjusting to school, it's getting better and Landen is less apprehensive now so that helps. It's scary to send your child out into the world and let them go. The fear of the unknown is daunting and with all the terrible things that have happened in the recent past with school shootings and crime, it makes it even more frightening. Today, when I pulled up to school and saw 3 cop cars parked in front, panic set it. Of course, my mind wandered to not very good thoughts. As Olivia and I walked in, you could hear the whispers and mumbling of what was going on. It was unnerving. Landen's class is usually first to arrive and we are out of the chaos before it even begins but today, we stood there and waited, and waited and waited. I and another mother of a child in Landen's class were both becoming increasingly anxious. Relief set in when I finally saw Landen. Of course it's near impossible to get the truth, or at least accurate bits of information out of my 6 year old, so I didn't get much and Landen never saw the police officers. I later found out that a student was threatening a teacher and the situation "got out of hand" thus the reason for the cops, unsettling to say the least. This is an elementary school, the oldest kids there are at most 9 or 10 years of age, and this happens? Like I said, the fear of sending your child out into the world is scary but as scary as it is, I also know bad things can and do happen anywhere, at any place at anytime. It does make me rethink our choice however of public or homeschooling. . .

So yes, it has been an eventful start to the school year. I am seriously hoping things get better and there is a whole lot less drama going forward. As much as I want to hold my kids tight and never let them go, I know I can't. That scene from Finding Nemo again pops into my head when Marlin and Dory are searching for Nemo and Marlin says: "I promised I'd never let anything happen to him". Dory says: "Hmm, that's a funny thing to promise". Marlin: What? Dory responds: "Well, you can't never let anything happen to him. Then nothing would ever happen to him. Not much fun for little Harpo". As silly as Dory is, she hit the nail on the head there. A good reminder of why we must let go, at least a little and let the kids go out into the world to become who they are meant to be.

Wednesday, September 4, 2013

Great Faces, Great Places - Birthdays & 1st Day of School

Whew! We had a busy August as we "unofficially" said goodbye to summer (insert tears) and finished it off with a lot of fun. This will go down as one of our best summers yet. We did so many fun things, from our annual camping trip to trekking on new adventures to many fun places and spending ever so precious time with family and friends, it was grand. So very sad to see it go . . .

After Jeff returned from Sturgis from the motorcycle rally, we headed back out to the Black Hills just a week later for a family trip with my younger sister, her family and my mom. It was a short trip but we packed in as much as we could in the 3.5 to 4 days that we were there and were happy with how it all turned out.

To break up the 10+ hour trip we headed down to Grandma and Grandpa's house and spent the day with them and then headed to Jeff's sister's house to spend the night. We so appreciate the hospitality that Grandma, Grandpa, Aunt Jennie and cousin Aleah showed us while we spent time with them. My kids are still talking about how clean Aleah's room was. I'd like to say they both have picked up a thing or two from the visit and now keep their own rooms nice and clean, but that's not the case. While Olivia does a pretty good job of keeping her room clean, Landen on the other-hand is too busy being a boy and making messes so his room, not so much. I absolutely adored this sign and the time Aleah took to make it for us, too sweet.

The next morning we packed up and kept on our way. We made a quick stop in Chamberlain to get a few pictures with the Missouri river in the background. 

These were our best scared faces and being the chickens that we are, we did not venture down the path to see if we'd encounter any poisonous snakes.


Once we arrived in the Black Hills, we headed straight to SDSM&T to the Museum of Geology. Landen was so looking forward to seeing the dinosaur fossils (beings his current career of choice is a geologist) and both kids enjoyed the rocks they purchased as a parting gift from the gift shop. 


The hours upon hours spent in the van and the visit to the museum proved to be enough excitement for one day so we headed to our cabin for check-in and all crashed early. 

Day 2, we started out with a road trip to Sturgis. I had never been there before so I was anxious to see it and pick up a few rally t-shirts (on clearance!) as a souvenir. It was so not busy in Sturgis and Jeff said it looked very different from just one week prior during the motorcycle rally. 
From Sturgis we headed on over to Deadwood. We walked around for a bit and took in some of the sites but it was so blastin' hot that day so we were all glad to get back in the van to the ac. We did manage to snap one photo of our time in Deadwood however . . . 

Next on Landen's "to-do" list was to go trout fishing. To be sure we were able to catch a trout while on our trip, we headed to Trout Haven where Landen got his catch. Olivia was tuckered out and fell asleep in the van on the drive there so her and I waited while the boys fished and it took all of about half an hour. We fried up the trout for a snack and it sure was tasty!

Day 3, my mom and sister arrived so we were excited to do some activities with them. We started out with a trip to Bear Country, it was so very cool and we had a lot of fun . . . the kids were excited to run around with their cousins, Mason, Matthew and Emma.




After Bear Country we headed back toward Deadwood for lunch and then we were off to explore the beautiful hills and try to find some more trout fishing. While we didn't have any luck catching a trout, we saw some very beautiful areas of the country, dipped our feet in the frigid waters of Spearfish Creek and just enjoyed the phenomenal scenery. Spearfish Canyon was by far my favorite, what a beautiful place that is. 

Day 4, we went to Mount Rushmore and then spent a few good hours at an outdoor waterslide park that has been around for a very long time. In fact, both me and my younger sister Amber went there when we were kids. After the waterpark we decided we should head back toward home as we had one travel day and Jeff had work the following day and Landen had kindergarten orientation so it was a pretty big day that I did not want everyone to be overly tired for. We made it to Grandma and Grandpa's house by midnight and crashed about the minute we walked in the door. The next day we headed for home.

Goodbye South Dakota, we had a very fun time and saw some very beautiful places. We'll definitely have to make a trip out there again in the future.

Over Labor Day, we headed up to Grandma and Grandpa's lake place to celebrate birthdays. Aunt Em, Makayla and I all have birthdays in early September and Olivia's is the 1st of October so for the past few years it's worked out really nice to celebrate over Labor Day for one last hurrah up at the lake before everyone's schedules get crazy busy with school and illnesses seem to lurk their way back into our home. This year was super fun as well. Both Makayla and Olivia are fond of the Disney princesses ever since our unforgettable trip to Disneyworld in February and had their princess attire to prove it. They were pretty princesses indeed . . .



Olivia is still all about the Little Mermaid Ariel, she is by far her favorite princess and Olivia is thoroughly enjoying all the Ariel toys she received for birthday gifts. It's been nice to have new things to keep her entertained for the past few days now as her big brother Landen is at school every afternoon . . . 

Jeff and I tossed around our options regarding school between homeschooling or public school. While I honestly don't believe there was a right or wrong choice to be made, it was still a tough decision to make, another one of those robbing Peter to pay Paul choices. The biggest benefit of homeschooling would be the lack of exposure to every illness under the sun that kids pick up in school. The downside, lack of social interaction. So after much going back and forth, we decided beings Landen is so shy and doesn't have any close friends besides his sister and cousins, and is such a homebody, that he needed to be able to go out in the world and try to make some friends of his own. So, that brings us to the first day of school, ugh. How is it that I went from having a sweet baby boy to cuddle and hold in my arms which to me doesn't seem like that long ago to now having a 6 year old who is in kindergarten? I still am having trouble wrapping my head around this. Landen went to daycare for just 2 short months when he was a baby before I was able to quit working to stay at home and raise him. He's been here with me, day in and day out ever since. I don't think it's fully sank in yet, beings we are still in week one but it's going to be a huge, huge adjustment for me to not have him here at home with me so much this year. Preschool wasn't bad, it was a couple hours 2 measly days a week, but kindergarten, it's a whole new ball game. It still just breaks my heart that he has grown up so fast. As sad as I am to see him grow, I know that it is what it is, it's how it goes. It's rewarding and heart wrenching all at the same time to watch the kids grow up so quickly right before my eyes but I'm so very blessed I've had the past 6 years with him all day every day, I am beyond grateful for that. Now as he and I adjust and he starts a new chapter in his life, I couldn't be more proud, albeit teary eyed, to see how he will grow and excel this year. 
First day of Kindergarten - 2013. At least he was smiling before we walked in the door!

While Landen was at school, Olivia and I headed out to find him a gift for being a big kindergartner now so we decided on some legos. We bought him the coolest set that is a 3 in 1 house set, you can build it and take it apart and build it again 3 different ways. When I saw it, I knew it was perfect for him as he loves to recreate his lego sets. He's had it for 24 hours and has already built it the 3 different ways. The gift definitely put a smile on his face!

Landen and Olivia are so different. Olivia would run into school without looking back with no problem, she's independent, a go-getter and absolutely loves doing new things with new people. Landen, is the opposite, he's more reserved, quiet and a real homebody. His first day was tough, I shed quite a few tears while he kept it together. He tried so very hard to not cry as we dropped him off, he gave us a backwards wave, for what I believe was fear of looking at us and tearing up. I'm not sure who it was harder on, mom and dad or him. If it was Olivia, I'd say it was harder on us because of her personality but with bud, it's hard to say. Needless to say, I and I'm sure Jeff too, were so glad when it was pickup time and we got to bring Landen back home. He didn't have too much to say about his first day, I'm sure it was overwhelming and the newness of it is most terrifying but all in all it seemed to go okay. My heart broke a little when I later went through his backpack and found the papers he brought home. Each student was given a sheet that said, "On my first day of kindergarten, I felt ________." Landen wrote "sad" and drew a face with a frown. (insert more tears). 

I am happy to say that today was much better for us both. Knowing what to expect after the first day I'm sure was a huge help. I hope he has a great year, full of fun and learning and making a new friend or two. Olivia is still getting used to not having her best buddy around to play with in the afternoons. For the past two days we've had some errands to run to keep us busy and help pass the time but once we don't have as much running to do, I'm sure she'll be asking more than she currently does, "Where's Landen"? We'll have to do some fun girly things in the afternoons and I'm most thankful that I have one on one time to spend with her now too like I did for the first 3 years of Landen's life. 

That sums things up from here, time is flying, lots of changes going on around our home and it's sure to be an eventful month. We'll see how it all goes. . . one day at a time. 














Thursday, August 22, 2013

Welcome Back . . .

Welcome back mucomyst . . . even if it is only temporary. After not being able to get our hands on this nebulized medication for Olivia for over the past year because of the shortage issues, I was absolutely elated to have the not so pleasant scent of this med floating around our home again yesterday afternoon during Olivia's treatment. As the saying goes, "you don't know what you have until it's gone", it plays true in this scenario as well.

When Olivia started doing her treatments at 6 months of age, she was started on mucomyst and albuterol and has continued with this treatment plan until this day, falling back on albuterol and saline solution when we can't get mucomyst. I know there are still shortage issues with the drug but for the next month, we will thoroughly enjoy adding this med back into her routine. It doesn't have the most pleasant odor, and I know that my curtains and furniture have a continual lingering scent from it, but it works for her, it does it's job in helping to clear out that mucus so I wouldn't have it any other way. We've seen how her cough is with and without it and know that this is the med for her, at least for now.

In other news, we received Olivia's culture results from her August clinic appointment and she cultured heavy growth of staph, not great but not so bad either. She goes up and down with staph, culturing it sometimes, not others, sometime it's low, others moderate or high so certainly not water we haven't tread before and I know that staph holds nothing on some of the other bugs she could have show up so we'll take it. Since she is doing well and asymptomatic we won't treat it at this time so nothing new will be added to her daily regimen for now.

As the days of summer quickly fade, we are trying to hold on as tight to them as we can and make the most of the time we have left of summer. We just got back from a trip out to the Black Hills which was wonderful, and will require a separate post for another day and we have birthdays to celebrate over Labor Day as we officially send summer off and prepare for fall. We have a kindergartner this year so both Jeff and I are trying to wrap our heads around that yet and prepare everyone in our family for the changes that will bring. As our pharmacist continues to tell me week after week or month after month when I go in to pick up Olivia's meds and encounter never ending issues in doing so, "one thing is for certain, nothing stays the same, everything changes", he is correct indeed, nothing ever does stay the same, be it with medications, the insurance company or life in general, nothing does stay the same and we definitely have a big change this year with Landen being a full blown kindergartner. As scary as it all is, I couldn't be more proud and excited for Landen however as he makes this big transition in life. Not to mention the soon to be 4 year old we'll have as we forever say goodbye to the toddler years. Yes, changes happen every day, it keeps things interesting right?

Tuesday, August 13, 2013

August Clinic

Yesterday Olivia had a follow-up appointment at the CF clinic and surprisingly, (but also a little bit expected because I watch the scale like a hawk every week on Mondays for Olivia's weekly-weigh-in), it was her best appointment ever! Her BMI was the highest it has been, she had gained over 3 lbs during the past 3 months and grew over an inch. I knew she had gained at least 2+ lbs but I didn't think we'd actually be over 3 lbs come the doctor visit but by the grace of God, she did it and amazed us all! She is nothing short of amazing indeed.

We've all worked so hard over the past 3 months knowing that we had so much ground to make up from our February visit to get Olivia to gain weight. Even brother Landen, bless his little heart, sat at the table with us long after he had finished his meals and snacks, encouraging Olivia to eat, offering her "treats" and candy for dessert if she'd take one more bite, drink a bit more milk or finish her meal. He is the sweetest kid, I am so blessed to be his mom. Thus our appointment was quick and after everyone told Olivia how awesome she is doing, gave her a handful of princess stickers, told her to keep up the good work and to keep eating good, we left clinic on a positive note and with happy hearts, which is about a first.

Over the past 3 months, we more or less let Olivia choose what and when she wanted to eat. If she was hungry, even mere minutes after just finishing a meal, we'd sit down and eat again. I don't know if it was prayers being answered, allowing Olivia to make more of the decisions, the fact that we are ending the toddler phase, or a combination of all three, but whatever it is, it worked and we couldn't be more happy. So at least for now, there is no talk of a g-tube, which we know all too well that if things go south it'll be brought up again, so for now we relish in the joy of how well Olivia is thriving. Since Olivia gained so much weight and Landen was instrumental in encouraging her, they wanted to pick out a treat for our taco party to celebrate. Collectively, they chose cupcakes for our celebration, and knowing why we were eating them, I'm pretty sure made them taste that much better! Now we wait nervously for her culture results and pray they come back okay, we should find out more next week. We also must continue to work our tails off to keep Olivia eating well and gaining weight, that battle never ends, so as we take a breather after the success of the past 3 months, today and every other day, we keep fighting to keep her weight up.

As summer is quickly coming to an end, we must make the most of it. Olivia could live outside if we'd let her. She loves riding her bike and swinging on the swing set, I have no idea what we will do when winter hits and we are stuck inside for such a long period of time . . . Thankfully, we have a few more weeks left of summer bliss.

Thursday, July 25, 2013

July

July started off quickly and it's hard to believe it's already coming to an end. Whew - time just keeps on ticking . . . summer weather was finally here and we had ourselves a grand month!

Strawberry season was later than usual this year because of the strange winter/spring weather we had but once the strawberry patch was open for business, the kids and I headed out for a morning of strawberry picking. This was the kids' first strawberry picking adventure, they were good helpers and seemed to enjoy it until the end when we were all feeling pretty warm. It only took the three of us about half an hour to fill 2 ice cream pails full of strawberries. The fresh berries were delicious and those that I froze we'll enjoy for quite some time. Jeff and I both remember strawberry picking as kids so I hope this is something they will continue to enjoy doing with me for quite a few more summers to come.

Next up was the 4th of July. Jeff and I decided to have another backyard camping adventure. We had the pool all set up, we pulled out our camper and set out for a weekend of outdoor fun. The kids loved it and didn't mind one bit that we were just footsteps away from the house. They had so much fun, swimming in the pool, grilling, playing and sleeping in the camper, roasting s'mores over the campfire and of course enjoying a few fireworks and sparklers.
Water fights with daddy.

Happy 4th of July!

Sparklers!

Shortly into July, I'm very happy to report, that Olivia figured out the whole potty training and has been doing super awesome since. I knew that once the fear of it had passed she'd have no trouble getting the hang of it and that was exactly the case. She does her business all day with no problems and even sleeps through the entire night without any accidents so far (knock on wood) so I am super excited for this hurdle that we have now cleared.

Cousin Braelyn came over for a week in July to play with the kids again during the afternoons and the kids had a lot of fun with her. Olivia was the most pleased when Braelyn had very sweetly packed up all of her "princess" toys and brought them over to give to her. She knows how much Olivia loves princesses ever since our trip to Disneyworld and decided to part ways with her princess stuff. It was just like Christmas morning for Olivia and she is loving every single princess thing Braelyn gave to her but I must say, the princess bike Braelyn gave to her to go along with her princess helmet is by far her utmost favorite. She wasn't much interested in riding her bike before but once she got a princess bike, it's now her favorite thing to do and it took her not even one day to figure out how to ride the bike with ease.


The kids also enjoyed more sprinkler time and pool fun. Glorious summer days.



In mid-July we took our annual family camping trip up to the lake with Jeff's side of the family. This is a week long vacation that we all look forward to each and every year. To escape for over a week to the lake and all the bliss that comes with it is so wonderful. We always create many memories to hold on to and the time always goes by way too fast but we cherish the fun we had and look forward to doing it all again next summer. 

First full day of camping - so excited to be here.

Building Sandcastles

We went on lots and lots of boat rides, Olivia loved steering the boat with Daddy.

Fun and Sun at the sandbar enjoying Grandma and Grandpa's pontoon.

Olivia was fearless about tubing, she wanted to go at it alone with just Landen and not mom or dad. Her first ride of the year I insisted Jeff go with and she did fine so we eventually let her go with just Landen and later cousin Makayla and she absolutely loved it. All of this young exposure to water will hopefully help to ease any fears of it. Living in the land of 10,000 lakes, I find it absolutely necessary that the kids know how to swim so I'm thankful for times at the lake, times in the pool and swim lessons to prepare them for a lifelong love of the water. 

Fun on the waterslide at Grandma and Grandpa's. This was a hit with the kids for sure.

Olivia loving the tree swing at Grandma and Grandpa's with Muffy chasing after her feet. I absolutely love the pure joy on her face that was captured in this photo.

Paddleboat rides with Grandma and Daddy as they were searching for turtles.
Landen out fished us all this year, he caught this 3 lb 4 oz bass right off the swimming dock on his little Lightning McQueen fishing pole. Daddy had to assist in pulling it in while Uncle Mike, thankfully,  had a net nearby to scoop it out of the water as it was off the hook as soon as it was in the net. Landen's wish while camping was to catch a big fish, he did, he did indeed!

Swimming from sun up to sun down, this was Landen and Olivia's most favorite thing to do. 

Landen tubing with cousin Carter, both were signalling us to go faster and to hit more waves and they were both disappointed when I won that battle and insisted that Jeff not do that!

Next up was Olivia and Makalya's turn to tube, both I and Em (I'm pretty sure) were a bit nervous about this but the girls did good and had fun and we went slow enough for us nervous moms to be okay with.

Olivia's catch of the day and boy oh boy was she proud.

With just a day left to camp, Grandpa took us fishing to a spot where Landen caught over 13 fish in under 2 hours. He reeled in sunfish, bluegills and perch so we had quite the stringer. Olivia was most interested in playing with the toys Grandpa brought along as a reminder from Grandma but she did manage to catch a couple. Quite the catch and so much fun!

Landen and Olivia with their cousins on our last full day of camping. We miss the lake already, are certainly happy to be back home and have space but we still miss it. It's a week full of fun and excitement and the time with family is precious. We love camping and can't wait to do it again next year but I certainly don't wish the time to go any quicker than it already does. 

As Jeff and I were packing up the camper we both were reminiscing about our first trip camping in the motorhome when Landen was just one month old and I can so vividly remember many details from that trip. How in the world have 6 years gone by already, it just doesn't seem possible. I'm so thankful for the memories and good times we have had and been blessed with. 

So as we wrap up July we are thankful for the good times, the memories we've created and the health of both the kids, especially Olivia. After such a long and drawn out winter and spring with one illness after the other, we are blessed to have had a good month of health. We never take those healthy times for granted as we know all too well things can and do change in an instant. 

As I am beyond thankful for Olivia's good health over these summer days, I am at the same time saddened for another one of my dear friends who is experiencing a bump in her journey with a recent diagnosis of cancer. She is another one on my list of "the amazing people I know". This is yet another reminder of how quickly things can and do change. I pray for her as she undergoes surgery today and wish her a full recovery as she fights through this battle. I am again reminded that good health is not to be taken for granted, I certainly don't need the reminder, I live through it everyday, hoping and praying for Olivia's health to stay strong but when I hear of someone else's journey being taken off course because of health issues, I think of how amazing it is and how it's no small feat to live to a ripe old age. One thing I do believe though is for those of us who travel the road less traveled in having to deal with health issues and the reality of disease and death, we are the select few that have the privilege of seeing life through a different lens, a lens open to the true beauty of our surroundings, even through all the hurt and pain, and one that offers us a deeper understanding of the important things in life, a lens that allows us to truly appreciate each and everyday we have here as we learn to understand that tomorrow is promised to no one, each day is a gift and in turn are able to live up to that reality. So to my dear friend, obviously this is a road you never would have wished to travel but I am amazed by your positive attitude and go-getter mindset and truly believe this will help you overcome all the challenges ahead. I pray for you today and I wish you a full recovery in the many tomorrows to come. I firmly believe your positive attitude and determination will do you absolute wonders in carrying you through. Please know we are here for you to offer whatever help we can in making your path less rocky.