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.


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!