Friday, July 29, 2016

Hello Blog, we're still here.

Seeing that my last post was highlighting the last day of school and saying goodbye to Shelby . . . it's been awhile!

We're still here . . . enjoying summer, staying busy and wishing time would slow down. I can't believe that back to school is just around the corner, it's so sad. Thus, I'll try to sweep away the cobwebs and rack my memory on the happenings of the past near 2 months.

Landen celebrated his 9th birthday on June 15th. My boy is growing up too fast! He had a friends party at the bowling alley with some of his classmates in the beginning of June and then on his actual birthday he wanted to go back so the 4 of us went back for bowling, pizza and arcade. 

We finished off they day with presents and cake. Landen wanted a cake made out of pickles, why I have no idea, but he was all about the salt and having none of the sweet stuff so I came up with the best I could think of for a "pickle cake".

The first official week of summer, the kids were in a week long swimming lessons class. They are both swimming like fish! To watch Landen swim laps up and down the pool over and over with his little feet a kickin' and his arms crawling, is just so sweet, I love it. Olivia is still mustering up her strength to swim the elementary front crawl but she tries so hard and she can hold her breath for so long, sometimes I'm about ready to jump out of my seat thinking she's in distress, but the workout her lungs get from swimming is amazing.

Landen had a one week break from school and then he started a summer program for "talented and gifted" kids. He chose an oceans study class and had a blast. It ran 5 days/week until just before the 4th of July so it didn't really feel like summer started for us until it was over.

Landen's Project Seek Class 2016

With one arm down due to my broken elbow, Jeff and I still managed to tackle building a deck for our above ground pool. This is something I've been wanting to do for awhile as the kids will literally swim in the pool multiple times per day, rain or shine, cold or hot, if we let them so I knew it'd be useful and something they loved. Thanks to the help of our talented neighbor and friend, who also just so happens to be a home builder, he helped us whip up the framing in a night and the rest was pretty smooth sailing. The kids were jumping off the deck into the pool within a week and I'm telling ya, Jeff and I might still be standing there scratching our heads, had our neighbor not come over to help us out.  The kids and I have spent countless hours out there on the deck and in the pool already, we love it! I also managed to do some landscaping work in the back yard around the house which was desperately needed. I was told to use my elbow or it would go stiff, use it I have, probably a lot more than I should but if you know me, you kknow I don't sit still and am always doing something so that's just how it goes.

For the 4th of July we hung out at home, it was pretty relaxed and low key as we prepared for our 10 day camping trip up to the lake with Jeff's side of the family. We headed up on July 8th, I'm not going to lie, the weather wasn't ideal or close to perfect for a lot of the time, but it was still a blast. The kids enjoyed tubing, both kids tried and got up skiing, we did some fishing, Jeff caught the trophy this trip, lots of swimming and much relaxing. It was great. Jeff and I have both been go, go, going, nonstop it seems for so long that it was nice to actually sit and do nothing for awhile and the fun we have with Jeff's folks, sisters and their family's is priceless as we sure don't get to do it often enough. Every year when we leave the campground, it's always sad and we already look forward to the next year when we'll be back again.
Fishing & Swimming


Building Sandcastles

Dad's monster northern - take note of the nice sized northern on the ground that any other day we'd be like "Oh, that's a nice fish", in this picture looks completely insignificant.

Landen somberly looking out the rv window as he says goodbye to the lake and camping 2016.

Since we got back from vacation, things are back to busy, busy. We've been down to Children's Hospital a few times for Olivia's research study, which makes for some very long days. Olivia also has taken 2 dance camps these past two weeks. She did a ballet class last week, and can I just say, she definitely looks the part and makes a pretty ballerina! This week she is doing hip hop and likes that just as much. In the fall she will begin dance for the school year, doing hip hop, jazz, ballet and tap. She says she likes it and is looking forward to trying something new. We are taking a break from gymnastics this next year.
Ballet Class

Olivia also had a follow-up visit with the CF team this week which doubled as a pre-op appointment for her upcoming ENT surgery in August. For the most part she is doing well, her pft FEV1 is back up to 111% which is great. The main concern by our team was with her weight loss. Since May she has lost 2 pounds. Jeff and I both can see it and can come up with reasons why. She's very busy and active, she's staying up later at night and getting less of her overnight tube feed in, she rarely eats much of anything by mouth, we didn't run the tube feed for 10 days while camping . . . there are many reasons. While the CF teams applauds us for "living life" and "taking a break" from the g-tube, they also are very concerned with the weight drop because a BMI in the 50th percentile equates to better lung function.

However, back in May when her BMI was well over the 50th percentile, her lungs were terribly ill and she ended up in the hospital, just sayin'. Not to mention the quality of life from back then to now is not even comparable. Back in May she was home sick from school, sedentary doing much of nothing while trying to kick that which wouldn't go away. None-the-less, we need to step it up and get her weight back up so starting this past Wednesday, she is to have a bolus feed of 1 can of formula every afternoon for a snack. This gives her an extra 375 calories/day. I could also try to give her 4 cans/night but there is no way. It was a complete train wreck with nausea and vomiting and what have you back before we figured out the routine and schedule that works now so her and I would rather do the bolus feed during the day and be done with it. The past 2 days have gone fine and hopefully it will help because as has always been the case with Miss Olivia, she has a very poor appetite and doesn't eat much and as a result, g-tube or not, her weight is always a struggle. We return September 1st for her annual studies, glucose tolerance test and all that jazz so we will see how the next 6 weeks here go and see if we can get some weight put back on her.

And on that note . . . ever since the roller coaster ride that was kindergarten, I've been toying with "to homeschool or not to homeschool". I've always been an advocate that Olivia deserves to live and go out in the world and experience new things. Jeff's been more of an advocate for home schooling. Well, we tried public school. It did not work effectively. Olivia missed over 50 days of school last year. It was hard . . . for her and for us. The days that turned to weeks to a near month at a time where she'd be stuck at home while Landen and her friends were off to school, did nothing good for her mental state. The hospital stay that threw us all a curve ball, it was so unexpected for how well she'd been doing all of these 6 years, it was an all around an eye opening experience. Toward the end of the school year, Olivia was scared to death to go back to school as she equated school with getting sick with ending up in the hospital again. I swept the idea of homeschooling or public schooling under the rug for the past 6 weeks, well now it's crept its way back out.

The hospital stay has been instrumental in our decision making on this subject. For Olivia she realized how sick she can get and how fast the tables turn. Landen was juggled around back and forth between home and the hospital without his family at times, all while trying to keep up with school and routine while his life had been turned upside down, and Jeff and I? Our skin is a bit thicker, we know more about cf than the kids, we both knew the hospital wasn't going to be an "if" just a "when" but given Olivia's history and health up until kindergarten, we didn't think a week long hospital stay would happen this soon for her.

Jeff and I were both pondering what to do about school when we got back from vacation. I was toying with the option to home school while he was looking into private schools and we both agreed along with Landen and Olivia that public school wasn't going to be in the best interest of our family this year, so all 4 of us agreed that we will be doing on-line school from home this year for both of them. Landen jumped right onboard and Olivia was right behind him. Olivia said she tried hard to not get sick and didn't want to go back to the hospital along with a whole handful of reasons in favor of staying home for school this year, so we are going to give it a try. Jeff and I both agreed it's worth a shot and next year we can re-evaluate but Olivia's health is and always has been our number 1 priority and because of that, I think this is a good choice for this year. The kids are going to do Connections Academy on-line. The kids will each have a computer and be able to log into the school, chat with their teacher and I am their official learning coach here at home and will help them each and every day. It'll be a big adjustment for the 3 of us, but one that is definitely worth it.

Even with Landen, "back to school" has never been exciting for us, dreadful really, knowing all that will come with it so already this just feels so much better. The flexibility it will offer us, anywhere we have internet we can school will be wonderful for all the unexpected things life will surely toss our way. In order to get out of the house and socialize we will really be pushing the kids into extracurricular activities. Olivia is going to do 2 dance classes all year, basketball in the winter and we'll see what else. We are going to start Landen in taekwondo once or twice/week and he'll also do basketball and go from there. They also both want to do music lessons of some sort, so we'll find things to keep busy and stay sane!

And we also have the perfect school room, we just need to get it started and finished within the next 4 weeks! We have a 13' x 24' bonus room above our garage that is unfinished and a hot attic right now but it will make a great dedicated school space, so Jeff and I need to get going on that to have it ready by the first day of school which for the kids will be August 29th. Yikes, we've got a lot to do . . .

Minus the junk that we de-cluttered last weekend, this is the current state of the bonus room, we have our work cut out for us. 

But for now, we are going to keep on enjoying the rest of summer and living it up while things are going well and in our favor. This weekend is "backyard" camping, so on that note I best get to it.