Friday, December 23, 2016

2016 wrap up

Do you ever have those days where things just aren't going right, and you know exactly what you want to say but instead you say something else? The whole, what I want to say is this . . . what I actually said was this . . . Somedays, I wish I was more like my sister Amber, or my daughter Olivia, without a filter and could just say exactly what I was thinking, regardless of how raw it may be. Sometimes I'm like that, most of the time I'm not, and most of the time I just end up ranting to my sister Darci, telling her what I want to say but didn't.

It's been a long few months. To say that Landen, Olivia and I are more than ready for our winter break from school, is a vast understatement. Christmas has come so quickly and between all the holiday activities and traditions we do, added to trying to finish out the semester strong, to be a teacher, a mom, a homemaker, what often feels like a medical professional . . . it's been so busy, too busy.

The holidays are wonderful, albeit a bit stressful. Every year I continue to get the emails from the CFF about "staying healthy this holiday season while celebrating with family". Opening those emails isn't really a reminder or a new sting, it's the way we live our lives everyday, but maybe this year the slap is a bit harder, because with schooling online at home, we are already doing all we can to keep Olivia healthy aside from just living. Maybe it's the reminder that CF is ever present and a big deciding factor in every thing we do or maybe it's the fact that Olivia is now 7, living with a progressive disease that each year wreaks more havoc. Maybe it's the fact that we have 1 hospital stay under our belt already and know that another one will arise - not an if, but a when. Maybe it's the fact that it seems we just can't catch a break lately. I'm not sure, it's just been a lot. A very trying and testing time as of late.

Olivia finally overcame her fear of choking and dying. Once we started the periactin back up she had an appetite and was hungry so she actually just ate without having the mind games affect her eating. One hurdle cleared.

A few days later, we got Olivia's culture report and she had again cultured staph as well as a new bacteria she's never had before, klebsiella. This isn't pseudo or b.cepacia but still, it's another thing. I've been told it's not a bacteria that usually causes pulmonary problems but if you know us "probably" never sits well, we've had too many situations where the "probably" has turned into a for sure thing. There is nothing to do about it since she's healthy and I was told the staph would be treated if she were symptomatic as compared to the other. So Jeff and I pondered the new bacteria and figured that given the fact that the new bacteria "probably" won't cause symptoms and that Olivia is healthy right now is the best we can hope for. Just typing those words and saying them really sucks, to have to live and have the mindset of "it's the best we can hope for" when it comes to your daughter's health really does suck. But, in order to stay sane and keep going, what else honestly can we do, aside from accept and move on. And in true fashion of not catching a break, Olivia had 1 ear infection a month ago and finally was able to hear again out of both ears for a little bit only to tell us us Monday her ear was clogged, again. Another visit to our ENT to find out she has another ear infection in the same ear. 10 more days of ear antibiotics. Oh the joys of CF.

Yes, it's been a lot. Yes, we are ready for a break and to catch a break.

However, for all that we go through and all that we deal with and for how down times can be, I always know it could be worse. The stories I hear about those this holiday season who are celebrating without a loved one, or those that have been recently diagnosed with cancer or something else, there are so many crummy, crummy things. Olivia herself will remind us when she's in the hospital or clinics and sees small kids going through chemo, fighting for their lives, how sad it is, how unfair life can be. Seeing others fighting like hell against diseases that are trying to take their lives too, most certainly doesn't make one feel better, it just adds to the crack in our hearts a bit more. Yes, life most certainly can be and seem very, very unfair at times.

Last night Olivia asked me, I think for the first time, if she could die from CF. I told her yes. She gave me a look of huh? and I clarified. I told her, "You aren't going to die today from CF. You aren't going to die tomorrow from CF. We work hard everyday to keep your lungs healthy and to keep you healthy". I told her that her lungs would need to be very, very sick. She quickly asked me, "Like when I was in the hospital?" I told her that yes, her lungs were very sick when she was in the hospital, but she got better, her lungs are better and we are going to keep working to keep them healthy. I told her that she would likely not die from CF for a very long time and followed it up with the fact that we can't live in fear. I told her that I could die tomorrow of something. I told her anyone of us could, and said that we can't let that scare us out of living. I told her that everyday we do all we can and will continue to do all that we can to keep her healthy, always. She seemed content with that and continued to finish all of her supper.

She's wise for her age, my Olivia, yes she is.

So as we push through to finish up our last day of school before break, (yippee) we are going to work hard, have fun doing it and celebrate our winter break tonight. The kids anxiously look ahead to the magic of Christmas and celebrating Jesus' birth. We look forward to rounding out 2016 with a big bang and a fun vacation and look ahead to 2017 with optimism and hope for a blessed new year. As we look back on 2016, we know we are blessed for the year we have had together, the memories we have made and will never forget.

Today, what I really want to say and what I actually say are aligned:

 I wish you all a very Happy Holiday Season and a Blessed 2017. 
May your blessings be great and may you never take time for granted. 

Here's a picture walk of 2016.

February - The CF Climb


March - Awards at Sunrise

May - Hosptial stay for CF Exacerbation


A Mother's Day we'll never forget.

Olivia's Kindergarten Graduation

June 2016 - We said goodbye to our beloved Shelby

April 2004 - June 2016

Last Day of school June 2016

My Broken Elbow 

Landen's 9th Birthday 

July - Enjoying Summer


May, June, July, August . . . Dirt Biking 


June, July & August - Swimming

Camping

August - Starting and Finishing off the Schoolroom 

 First day of 1st and 3rd Grade - August 2016

September - Twins Game 

October - Olivia's 7th Birthday 

 Happy Halloween

November 

TKD 

 December










Tuesday, December 6, 2016

December CF Clinic

Yesterday, Olivia had a follow up with the CF clinic. It was a good appointment.

Her pft numbers have gone up with her FEV1 being above 100% now which is a blessing to see, beings that back in May her FEV1 had dropped down to 77% when she was in the hospital. Knowing that lung function isn't always able to rebound after an exacerbation, added to the lung disease that is CF, we are grateful that Olivia's lungs are functioning as they are.

Back in September, Olivia's weight was very low. She weighed less then she did in May when she was admitted into the hospital. A lot of ground needed to be made up in the weight category. Even with the nightly tube feeds, her lack of an appetite was clearly taking a big toll on her weight and in turn was causing her height to stabalize rather than continue to grow as it should.

We started Olivia back up on a much lower dose of periactin in September to see if we could stimulate her appetite enough so that she would 1) actually eat something during the day by mouth and 2) gain weight. Given the awful side affects that the higher dose she had been on would have on her emotional and mental state, we looked into other options but in the end, for her age periactin was it. I was pretty skeptical that the lower dose would do much, given that the higher dose we'd had her on for years worked for awhile, then tapered off and then did much of nothing. However, we did as instructed and were surprised that the low dose didn't have any ill side affects at all and also that the lower dose did enough to actually help her appetite. She began to actually eat something during the day and in turn gain some weight. She had gained over 5 lbs in the past 3 months, but do to a new fear resulting from a scary dream she had about choking and dying, she has lost a pound in the past week and a half. However, yesterday at clinic she had gained right around 4 lbs since September and her height had increased as well so we were all pleased with that.

For the next 2 to 3 weeks, we will stop the periactin since the effects of it have come to a hault and then start it back up and hope it will again increase her appetite, all while trying to convince her that she isn't going to choke and die so she will actually continue to eat something during the day. This kid, will swallow 8 enzyme capsules, 1 vitamin D tablet, 1 periactin tablet, 2 study pills and 1 omeprazole capsule all at the same time with no trouble. Literally, a handful of pills. Jeff and I have tried to tell her that if she can do that, just fine, the fear of choking and dying on for say yogurt, a food one does not even need to chew, is clearly all in her head. Reasoning with a 7 year old however, is no easy task. Thus, the hope is now that since she's done so well with her weight gain that we don't lose all the ground we have gained since she is off the periactin and has now developed a new fear to eat.

Ugh, it's always something it seems; 1 step forward and 2 steps back.

We have a vacation coming up later this month and I've told Olivia that if she does well eating and keeps her weight up we can leave her tube feeding supplies at home. Flying and going through the airport with her vest machine, nebulizer and all her meds, as well as luggage for 4 is more than plenty but if need be we will add in all the formula, tubes, bags and feeding pump as well. I know she'd like a "vacation" from her g-tube but we will see. I'm not willing to let her weight drop drastically in the process.

Aside from that, the rest of her appointment went well. Her ears look pretty good now after dealing with them being clogged and/or infected for the past 2 to 3 weeks. Her lungs sound clear, she has no daily cough so now we await her sputum culture and keep on doing what we are doing and return in 3 months for her next follow up. All in all, a good visit.

Time is flying by, I'm not sure how we are already into December and counting down the days until Christmas. The kids continue to do well in school at home and I continue to adjust to being their teacher while trying to get all the other tasks done, like cleaning the house and laundry as well as cart them to and from their extracurricular activies Mondays through Thursdays each week. It's a learning process and one where things are prioritized and some things are just let go but all in all, for being in our 4th month of this new routine, we've adjusted pretty well.

With Thanksgiving behind us and Christmas just ahead, we wish you a very happy holiday season.


Friday, November 11, 2016

Reflections

We live in a smaller community, when something happens to someone, the news spreads around the town like wildfire. On October 1st, Olivia's birthday, a young man was in a very bad atv accident.

I heard of this family's story at dance class and at martial arts class. As I drove through town, I saw words displayed on the McDonald's sign, the County Market sign, the city sign, cheering on and in support of this young man. An entire community rallying around the hope, faith and healing for this family. I followed along with the family's journey over the past weeks through the caringbridge website that they set up. I prayed for the family, was amazed by the undying and strong faith this family had while faced with the unexpected and as I read, so many of the words that this young man's father wrote in his journal entries were words that pulled at my heart strings.

What amazed me the most was the strong faith this family had and held onto while their son was fighting for his life. Through every word the father put down in his journal entries, hope, faith and trust in the Lord were evident - in every. single. word.

When Olivia was born, I went through a period of grief, of loss and my faith was heavily tested. My faith was questioned and at that time and in those dark moments, some of it was lost. In one of the journal entries, this father spoke about never knowing why some will have it easy and others will not. I myself pondered this question and it's one that I will never know the answer to. I'll never know why we were chosen this path, why Olivia was born with a life-threatening disease, but long ago, when most of my faith was lost, I picked up what was left of it, put it back together and trusted that questioning the why's and the what if's wasn't the answer, it was playing the cards that we were given, the best we could, while trusting that the Lord had a plan for us and for Olivia. In that time of grief, in that time of doubt, when I began to overcome it, it was then that I knew that with each gift of a new day and with every given tomorrow, my family, needed to live life fully, every. single. day.

The grief, the anger, the frustration, the doubt, it's a never ending battle, one I know that I will fight for the rest of my life. When times are good, the grief and anger is pushed down, away, further inside, but it's still there, always there. When times are bad, like the week long hospital stay in May for Olivia, the grief, the anger, the doubt, the questioning of everything, bubbles over until it overflows and overcomes me. Anxiety, sadness, hurt, anger, despair, helplessness, these are all things I deal with, some more often than others and it's that dealing with it that is my means for coping.

CF is thrown in our faces every single day. There is no behind the scenes. There is no day off. Every day, from the moment I wake up, until the moment I fall asleep, CF is there. We begin each day with Olivia's treatments and finish off each night with the same and then all through the night, Olivia is hooked up to her feeding pump, which often alarms and wakes me multiple times while I'm sleeping, which we run with the hope and the thought that she will gain weight to grow her precious lungs. Every. Single. Day, is a battle against CF.

To say life is unfair, to me often seems like a vast understatement. To say that I wouldn't trade my shoes with someone else, for those not filled with a life threatening disease for my daughther, would be a lie. I'm not saying my bag of stuff is better or worse or more or less significant than anyone elses. I know, I've lived, I've witnessed through the all too often doctor visit's that there are many others who have stuff far worse than I. This local family's bag of stuff, the accident that claimed their son's precious life, my bag doesn't begin to compare. Things could always be worse, this I know and do believe.

I've been down in the trenches, I've been to very dark places, I've questioned all that is and there were days long ago that I wanted to throw in the towel and just be done. Now, before you call in the staff from Shutter Island, hear me out. Life is not fair, this isn't something new, I think everyone knows this. Everyone has something to deal with, everyone has a bag of stuff. Some bags are worse than others, but that's not really the point. I could sit and compare my bag to many people's and I could probably convince most that I know, that my bag is worse. Again, not the point. My point is that no matter how vast our bag of stuff is, how much bad verses good it's filled with, it's how we handle the bag, how we manage it that is my point.

There are days you'll see me and not know that each day I fight like hell for my daughter to beat down the havoc CF wants to do to her on any given day. There are others, where you'd know my bag of stuff has overflowed. I have not, nor will I ever perhaps, master dealing with CF, the chronic illlnes that my daughter lives with, but, each and every day, I have two precious sets of eyes looking up to me, following me for guidance for answers, for truth and knowledge. I have two small beings that I'm in charge of shaping into the adults that they will become. For them and for how precious I know life is, we live. We make the most of our days. I push down those things in my bag that are very significant, albeit things I can't change and work around them. I've said it many times, over and over, but it's true, each day we laugh, some days we cry, but each day we live, and live fully and have fun and hug and love and laugh so that each night, when I lay down, I know that if it's the last day I'm blessed with, we went out with a bang.

Living life fully for us is not making everyday a big hooray. It's the little things, the simple pleasures in life that make life for me what it is. I am beyond thankful that I get to spend so much time, every single day with my kids. Time is precious, there is never enough of it and when it's up, we don't get it back.

This family, on the day of their son's accident, the father wrote about what a really good day that they had together beforehand. What hit home was this father writing about this last day that they would spend with their son outside of the hospital, awake, was a day full of the simple pleasures, the little things in life that make the days special, those that give us joy in living life fully. The father wrote of going out to eat, going to Target to get the makings for carmel apples, those things that we can do together as a family that often trump the big things that we save up our time for. It's not the trips to here and there that the kids remember most, it's the little things, the stories Landen and Olivia will retell about the simple pleasures in life, the everyday things that we find joy, happiness and fun in that the kids often remind me of the most. The days can seem long, mononotous at times, but these days provide us with experiences and everlasting memories that I cherish.

As I continue to follow along with their story, praying that their faith carries them through the life that lies ahead for them as they traverse a path without their son, I'm reminded of how short time is, how precious the little things are. This father wrote about time and encouraged all who read to hug our kids tighter and more often and cherish those things that we don't ever want to forget. So last night, after I laid the kids down to sleep, I wanted to write down those things I love the most, right here, right now, the simple things that mean so much, those things about Landen and Olivia that I never want to forget.

Landen, these are the things I always want to remember about you:
- The smell of your blue blankie that smells just like you, that I snuggle with everynight while you read to me.
- The way you can be so silly that you make me laugh until my sides hurt and tears fill my eyes.
- The part of you that is just like your dad; how your mind figures out the different scenarios for all situations.
- How cute it is when you mess something up and say "Aww Dang!"
- How you get choked up saying goodnight to daddy over the phone when he's away on a business trip, no matter how long or short of a trip it is.
- How sweet and caring you are, your worry and concern for others is beyond your age.
- The way that you always want to help to make life easier for your family, liking asking Santa for a new living room couch.
- The way you care so much for your little sister, which isn't an easy task. With all that she has going on, life can often seem unfair and that you are taking a back burner to her I am sure. Your life although not physically inflicted with cf, is definitely changed and altered because of it and the way that you deal with it, live through it and come out happy, loving and caring, is commendable, at times unbelieveable and I am so proud of you.
- The way you strive for perfection and never want to get anything wrong.
- The way you put in well over 100% into all new tasks you take on.
- How you will let mom and dad beat you in Call of Duty, just to make us feel like winners.
- Reading Diary of a Wimpy Kid books with you at night, especially the night we laughed until we cried about Greg's journal entry about Shel Silverstein.
- Your hugs and your snuggles and the way you curl up right beside me on the couch while we play on the PS3.
- Your dead on reinactment of the kids talking on the not-working-microphones in school lessons.

I love you so much buddy, you are the best son a mom could hope for and I couldn't be any more proud of you.

Ms. Olivia, there are things I will never forget about you, things so engrained in my mind from how your journey began. I'll always remember the struggles you overcame in your first few weeks of life, so many things I'll never forget, so many things I love.
- You are strong and determined, you never let anything or anyone stand in your way from accomplishing that what you want to do.
- I love that dad nicknamed you Deedle from the days you'd stand at the refrigerator, playing with the magnets while I made dinner, saying "deedle, deedle, deedle", over and over and over. I love that even to this day, 7 years later, you are still our little Deedle.
- Your love for all animals, even the rotten, biting cat you have and your forgiving nature - the way that no matter what you never give up hope on your cat, that she'll get better and be nicer.
- Your matter-of-fact attitude topped with just enough sass.
- Your love for life, regardless of the hurdles along the way.
- The kisses I get from you everynight before I tuck you into bed.
- All the hugs you give me, every. single. day.
- Your determination and perserverance and carefree attitude in all things you do.
- Your care and concern for your family.
- Your outlook on cystic fibrosis.
- Your laugh, I need to get it on video tape.
- I love to see and hear you sing.
- The way you tell it like it is.
- The strength that you have through all the pokes and prods and medical things you have to endure all too often.
- Your fearlessness, i.e. dirtbiking.

I love you so much, you are my baby girl and my hero and I'm so proud of you and lucky to call you my own.

I feel so blessed to have Landen and Olivia as my son and daughter. They are as different as night and day at times and at others so much of the same. They make our lives complete and fulfilled. They are the icing on our cake. These two make life what it is, we have fun and cherish all things and each other and they remind me that no matter how big my bag of stuff is, in times of overflowing or not, that together we can carry it.

And on that note, this week Jeff and I celebrated our 11 year anniversary. To him: Happy Anniversary and cheers to many, many more. He and I have a relationship where we compliment each other and yet can be as different as night and day and all too much of the same as well. We travel this path together and remain a united force and even though we may not see eye to eye on some things, many things, and neither of us will admit to being wrong, we really are two peas in a pod.





Wednesday, October 5, 2016

Happy Birthday Olivia!

Birthdays around our household are pretty darn special . . . and a little bittersweet.

With every passing year and with every "one year older", we are always reminded of how fast time goes. When you throw something like cystic fibrosis into the mix, a chronic disease that strives to cut precious time even shorter, the slap of that reality stings a little bit more each year.

None-the-less, we also know that no one is promised the gift of tomorrow and that for anyone of us, cystic fibrosis or not, today could be it. Thus, we live fully every day, making the most of our time together the best we can and know that if and when our tomorrow never comes, we are thankful and blessed for the time we've had together, the memories we've made and the faith that we will all see each other again one day.

Thus, Jeff and I strive to make the kids' birthdays, the "celebration of life" and the "gift of another year" as special each and every year as we can.

If you know Olivia, then you know she has been a fan of wolves for the past few years. We do not know exactly why or how it all came about, but it did. She calls wolves her "wolfie-babes" in a high pitched-little voice. Someday she wants to have one for a pet, she howls like a wolf quite often, in fact, I'm sure the neighbors can hear her! She has wolf shirts and wolf books and wolf toys and wolf stuffed animals . . . you get the picture, she's a 'wolfie gir'l!

So, over the summer, I did some googling and found that we are fortunate enough to have a Wildlife Science Center not too far from our home, just a 15 minute drive south to the Forest Lake/Columbus area. Bingo, this was definitely one of the to-do items on her birthday list. She also had been wanting to go back to the Amercian Girl doll store at the MOA, so we promised her a trip there for her birthday as well.

Olivia was counting down to her birthday since this past summer, really and once October hit, she'd tell Jeff every night and myself everyday how many days were left until her big day. It was so sweet how absolutely excited she was for her birthday to arrive. Thus, we started our celebration a day early.

On Friday we did our schooling in the morning, headed to Jeff's work for lunch with daddy and then all 4 of us headed down to the MOA. First stop, was the American Girl doll store. Olivia had fun picking out a few things for her American Girl dolls and then our second stop was to the Lego store. Landen wanted a Minecraft lego, it had nearly 1,000 pieces and he had it finished by Saturday evening. We also decided to hit up a few rides at Nickelodeon Universe. Olivia wanted to go on a rollercoaster, it looked a little frightening but that's how she rolls - fearless, so daddy and Olivia rode on that. Landen is not a fan of rides, he gets a queasy stomach so he and I waited while they whipped around. When it was over Jeff and Olivia were both smiles, although Jeff did inform me that he thought it was a bit much for Olivia!


The rollercoaster Jeff & Olivia are riding on.

I wanted Landen to get to go on a ride so I convinced him to try the ferris wheel with Olivia and I and he did. I tell you, that kid had me laughing the whole time, un-engineering the entire ride and the unsafeness of it, he's a mini Jeff in the making, he cracks me up, I love it! We survived the ride however and had a good time. After those two rides the kids said they were done so we headed out of the city, beat the Friday rush hour home and finished up our schooling all before supper.

I'm not sure how forced his smile was here on the ferris wheel as he was nervous!


Saturday, for Olivia's actual birthday we headed down to the Wildlife Science Center for the Harvest Festival. Let me tell you, that place was so neat. We've been to the MN Zoo numerous times and have never been lucky enough to see any wolves in their enclosure, they are always hiding but at this place, we saw so many, it was a dream come true for Olivia. We saw wolves upon wolves, pumas, a porcupine, a hawk, owls, snakes, bears, a stinky raccoon and cute husky dogs. My favorite husky was a little pup named 'Gary'. It was an awesome experience and so neat and cool to be able to deliver something for Olivia that she so adores. We will definitely be heading back to that place!

One of the many wolves we were able to view up close.
Notice the puma behind the kids, he was huge and intimidating.


The lynx - a pretty cool looking cat.
Olivia was pretty content to sit atop Jeff's shoulder
and observe her wolf friends.

After that we hit up Split Rocks for arcade and a pizza lunch. The kids rode dirt bikes later in the day, we celebtated with a wolf cake and of course presents and then we headed over to Aunt Darci's for supper. It was a great day!

Our best attempt at "wolfie snarl" faces.




The 100 piece makeup pallet from brother Landen was one of Olivia's favorite
 birthday gifts. I love Landen's look of wonder as he watches her reaction.
Olivia said she was most excited for her wolf cake so I had some big
expectations to fill.Thankfully, she was pretty pumped when she saw it
and I was grateful to snag the edible image from Amazon!
Olivia had a super awesome birthday. The weather was beautiful, it was packed full of fun, an all around great day. I think she was a little sad when her big day was over. It's been a glorious 7 years and I hope this year holds great things in store for Olivia with many lasting memories to be made.

Happy 7th Birthday Olivia!

Friday, September 30, 2016

7 years

Without sounding like a broken record, because I'm pretty sure that I say the same exact same thing year after year, but honestly, it does not feel like my baby girl should be turning 7 years old. It's been a rollercoaster of a ride and one that I treasure and thank the Lord for every single day.

The ride started out tough, I'm not going to lie or sugarcoat. If you know me, you know that's how I roll, tell it like it is - for the most part. On a sidenote, I wasn't always like this, but with all that life has tossed my way, with all the good, the bad and the ugly I've lived through, experienced and witnessed with my own two eyes over the past 7 years, I've grown a thicker skin and don't have much time to "beat around the bush" or bulls**t.

Anyway, back on track here.

Yes, it's been an eyeopening, learning, growing and all around quite amazing 7 years. If you would have asked me oh . . . let's say 6-1/2 years ago, my answer would not have been amazing - not at all.

I didn't always view things as 'growing', 'learning' and for sure not 'amazing'. There are days and weeks and months that all around have been pretty tough, pretty hard and very challenging. There are things I have downright despised. There are days I wanted much of the "crap" to go away. There have been days filled with mostly tears and sadness. There have been days of questioning everything and other days that were filled with so much fear. There are days I've wished that Olivia could just live a 'normal' life. But in all those not so great days and weeks, there have been so many blessings. In the grand scheme of things, there have been so many goods to outweigh the bad.

There have been so many days that this sweet, innocent, a bit sassy and spicy 7 year old, little girl of mine has taught me to change my perspective. She's taught me to look at life through a different lens; to look and see through her two beautiful blue-green eyes, what it is that she sees when she sees life.

Olivia has had hard days. She's had days where she has questioned if she would continue to live and for how long. There have been days that she has wondered and questioned that which is her life and her cystic fibrosis. But through it all . . . through all her trials and fears and pokes and prods and hospitalizations and pills and meds . . . this little girl, this amazing daughter of mine, lives life fully every. single. day. Olivia tackles everything she does with full force, head on and always gives more than 100%. She loves life. She too tells it like it is. She doesn't let anything, anyone and certainly not her cystic fibrosis slow her down. She doesn't hide anything and embraces every piece of herself. I know that her attitude about life may some day change, but I'm going to hold on tight to this outlook on life that she has right here, right now.

Thus, there is a lot to be learned from this 7 year old little girl and I thank my lucky stars every single day, that I get to live and learn from her each and every day that we are blessed to have together.

Just this past summer, the kids and I were coming home from the store and out of the blue, Olivia said to Landen and I, "Well, I'm lucky because I have cystic fibrosis and not many people do". She said it with just enough sass and matter of fact and emotion that is Olivia, displaying to us just how proud she is.

Now, for all the ways and means to view cystic fibrosis, for all the havoc it wreaks and crummy things it does and is, for this sweet, innocent little lady to believe herself lucky because of cystic fibrosis, to me, is purely amazing, and the best part?

She is right.

There are many days that I don't feel that Olivia is lucky to have cf and all days I wish and pray and hope for that cure, but for all that cf has taught us, for all that cf has shaped and molded Olivia into - the amazing tough as nails, determined girl that she is, Olivia is right . . . she is lucky. She is lucky to see life as she does. She is lucky to embrace the struggles she has because of cf and fight like hell to overcome them. She is lucky that the path she was given to lead, is a path that she embraces, pushes through with determination and perserverance and down right loves.

For Jeff. Landen and I, who get to walk along Olivia's path each and everyday, we too should feel lucky. For all that she has taught us in these past 7 years, we should feel nothing less than blessed. For myself to be able to call her my own, my daughter, it's an unexplainable feeling.

Lucky.

I love it.

So without further ado. . .

Happy 7th Birthday Olivia! (a day early)

Cheers to 7 years baby girl! I pray that we have many, many, many more years together, but if it's many or just a few, I thank God that you will make sure that each day is precious, each day is lived well, each day is tackled head on and that you will remind us all that with each day and every tomorrow . . . we are blessed.











Monday, September 12, 2016

Goodbye Summer - Hello Fall - Back to School

Summer in Minnesota has to be one of the most short lived seasons ever, it comes and goes in the blink of an eye it seems. We set the pool up in June and it literally feels like just a few weeks later we are taking it all back down to stow away for winter. Crazy. Yesterday, as we spent the day winterizing and prepping for the inevitable long winter season that is lurking on the horizon, I told Jeff, that the day when we take all of our summer stuff down each year and tuck it away for the winter is a very crummy day. It is indeed. Albeit, when all that stuff is done, it is a nice feeling to have it complete.

Yes, summer has come and gone. It went by fast and we had a blast. The pool deck that we built was a big hit and during the glory days of summer, the kids and I spent a lot of time out in the pool. SPF 50 everyday and it still looks like the 3 of us spent the summer somewhere tropical all day everyday.

Camping in July is always a favorite summer activity of ours and this year was no different. Later in the summer Jeff got Landen his own dirtbike as well as one for himself so Olivia, Landen and Jeff spent many evenings, and still do, racing around the yard on their dirtbikes.

Much of our summer days later in the summer were devoted to starting and completing the school room. For us beginners, it was a lot of work and always work that takes much longer than one imagines it will. Thankfully, we hired out the drywall, but the insulation, electrical, floor, trim and paint, was all us. We got it done, literally in the nick of time. The Sunday night before the first day of school I was still finishing up some last minute things. However, come Monday morning, August 29th, the kids' first day of school, the room was ready to go and our first day was a success.

Here is our school room, where we spend many hours everyday. Landen and Olivia each have their own computer desk, one on each side of the window and then a large table in the center of the room for doing arts, crafts, work in text books, etc. 



I bought these curtain rods at Ikea to use as a display area for the kids' art work. They fill them up fast!

Here is the reading nook area. Kitty loves to sleep in those chairs.

All of the kids's school supplies. 

Doing on-line public school at home this year has proved to be an adjustment for all of us for sure but one that gets better with each day and one that we are all happy with thus far. The kids are doing well with their school work and staying on task. Everyday they have at least one LiveLesson where they use their headsets to interact and engage with their homeroom teachers and other classmates so it is working out well. They are doing great at adjusting to their learning environment and listening to me as I teach them. Some days are very long and tiring for all of us for sure but we are very much enjoying it. Both Landen and Olivia have already had their first science experiment of the year and they both thought it was pretty fun.

Olivia is using the scientific method to examine a plant.

Landen is using the scientific method to examine the stringed off area as he looks for non-living and living things.

For Labor Day weekend we made one last trip in the motorhome up to the lake to celebrate the fall birthdays on Jeff's side of the family. Olivia, Makayla and I had a cool, windy celebration but fun to get together with family. The weekend previous was just as cold as we got together with my side of the family for a rainy and cool pool party to celebrate the kids' birthdays on my side of the family. This past week on Saturday we headed down to the Waterpark of America to celebrate Aunt Em's 40th birthday. It was a blast and a lot of fun and the kids loved the waterslides. Then we celebrated my 36th birthday yesterday after we finished all of our chores for the day. It was a busy and fun weekend.






Landen is doing Tae Kwon Do this year and is doing well with that. He started at the end of August so it's still pretty new but so far so good. Olivia will begin dance classes this week and she is really looking forward to it. It's sure to be a very busy fall around here with time zipping on by.

Health Update:
The last 3 weeks have been pretty jam packed with cf health related issues for Olivia. On August 16th, Olivia had same day ENT surgery. She had a polyp removed from her right nostril, she had her adenoids removed once again and she had tubes placed in both of her ears. The surgery was fairly quick and fortunately or unfortunately, we are all too familiar with the OR and the procedures so it wasn't too eventful. The worst part for Olivia was the sore throat that was a result of the breathing tube. As in previous surgery's this has also been the case and infact causes her more pain and drama than that which was corrected in the surgery itself.

For the first day after the surgery she was groggy and wouldn't talk at all because of her throat. She also wouldn't drink or eat much and was nauseous and vomitting for a good portion of the day; it was a long day. It took a good 3 days for the sore throat to be gone and for her to get back to her normal self. The pain from the nasal and ear surgery didn't seem to bother her at all.  Now if we can keep the polyps at bay and hope the adenoids stay away, we can steer clear of the OR for ENT related issues for awhile . . . that is the hope.

On September 1st, Olivia had her annual CF studies, this is always a long day. We began the day with her yearly OGTT (oral glucose tolerance test) to measure for CFRD (cystic fibrosis related diabetes). An iv was placed, initial blood labs were drawn and the glucola solution was given through Olivia's g-tube. Every 1/2 hour after that blood was taken from the iv. In-between draws Landen and Olivia were able to get in some of their school lessons for the day which was awesome, especially given it was the first week of school. Just one of the many bonuses of on-line school is the flexibilty it allows.

After the OGTT we had a break for lunch and then headed over to CF clinic for her next appointment. Her vitals were taken, the sputum culture was gathered and then we proceeded to go over Olivia's health updates for the past 3 months. Not surprising from our last visit, Olivia's weight has continued to drop. In May when she was released from the hospital, she weighed over 51 lbs. At our clinic visit on September 1st, she was down to 48 lbs. Even more concerning is that since Olivia's appointment in July, she has run her overnight g-tube feed every night and we have been giving her a bolus feed every afternoon and still to no avail. Her weight continues to plummet and now Olivia's height has begun to plateau which is a big concern, meaning that due to her lack of weight gain her height cannot keep up so further interventions than what we have been doing need to be made. It's very alarming to me that with the g-tube and the increased volume she's been getting that her weight continues to drop. It just goes to show that when she literally is surviving and relying on the g-tube alone for caloric intake, it's just not enough, unless we are to run it continuosly. So, we were given two options, continue more bolus feeds during the day to make up for Olivia's very poor appetite and food intake by mouth or start up an appetite stimulant. We discussed the use of marinol or periactin and in the end, given Olivia's age and to minimize side effects we were insturcted to start periactin back up and try to increase her oral appetite to put weight back on. After that visit we headed back over to the hospital again for Olivia'a annual chest x-ray.

We just started the periactin up last week at a very low dose and will slowly creep up with the hopes that the ill side effects will not be as severe for Olivia all while actually doing the job of increasing her appetite. Thus far, Jeff and I have not noticed any improvement so we did increase the dosage last night and will see how it goes.

I will monitor Olivia's weight at home and as long as we can get it to come up we will return to clinic in 3 months for our next follow up.

Not such great news on Olivia's OGTT results. Her glucose results came back as "impaired", meaning that her glucose tolerance is impaired but not to the point where it needs to be corrected with insulin or diet. We were told to keep doing what we have been doing, no changes to diet are needed and we will repeat the test in a year and go from there. If however, Olivia were to be hospitalized between now and then, we would monitor her glucose more closely during an exacerbation to make sure her sugars are okay. So, not excited about that news, but I guess it is what it is and all the nature of the beast that is cf, progressive with age. Her sputum culture came back as normal flora and staph and the rest of her blood work was within normal limits. Her chest x-ray showed improvement from that which was taken in May when she was hospitalized. Her pft's are remaining about the same.

Olivia continues to participate in the research study she is enrolled at down at Children's, so that adds appointments and labs and tests to our 'normal' stuff but all good things and Olivia is still happy to be enrolled in it.

So on that note, lots of changes around ourhousehold and my time is very limited these days with being a learning coach . . . a mom . . . a wife, so that's all for now.

Happy Fall!