Monday, June 23, 2014

Busy

We've been busy and time is quickly flying by. Hard to believe that July is just around the bend.

The end of May, we headed up to the lake to celebrate the boy's summer birthdays on Jeff's side of the family. The kids had fun and the weather was better than decent compared to past years and we were able to enjoy the trip in our "new to us" camper.

Can you tell he loves Legos?


Sadly, our 10 year old dog Shelby took a dive and got very ill, to the point we were thinking we'd need to put her down as she was in so much pain. Surprisingly, by a pure miracle, she bounced back and after we were able to get her back home and get an antibiotic and anti-inflammatory medication to aid with the tumor in her ear she is pretty much back to her old self. We know we are on borrowed time with her, she's 10, the vets have done all the surgeries they can to remove as much of the tumor in her ear/head as they can so it's a matter of time. She's been such a good dog, she is a huge part of our family and the kids really love her now which makes it harder. Since I'm fortunate to stay at home with the kids, she's been a huge part of my life, like my first child. I like her more than a lot of people - she will be dearly missed when she goes but perhaps she'll surprise us and live another few months or longer. We are enjoying what time we do have with her and after she couldn't even move just a month ago for a good few days, we are thrilled to see her walking around again and doing most everything she could before she took a turn for the worst.



Next up - June arrived. We celebrated Jeff's birthday . . .

 Landen began t-ball and is fortunate enough to have daddy for his assistance coach again this year. Olivia and I once again enjoy watching the games on Tuesday nights.


Landen finished kindergarten and is officially a 1st grader. He's growing up so fast. They celebrated their last day with a music program and it was so cute to watch all the kids sing their little hearts out.

Landen had a good year, he developed socially a lot more and walked away with a handful of girlfriends!

The weekend of June 15th, we celebrated Landen's 7th birthday. He wanted to go to the zoo so we hit up the Como Zoo and Como Town where both the kids thoroughly enjoyed seeing the animals and going on rides.




On his actual birthday, June 15th, we had a Despicable Me birthday party for Landen in the new basement movie room, which the kids loved. They got to eat a Despicable me lunch (bapples, cookie robots and tacos courtesy of Eduardo's Salsa & Salsa restaurant). Landen picked out a Despicable me birthday cake, they got to play Space Killer, with the prize being a Fluffy Unicorn of course and watch Despicable Me on the big screen. Landen said it was a fun 7th birthday.
Despicable Me Cake, Fart Gun and Landen in his Fargo Hat - mimicking the characters in the beginning of the movie Despicable Me 2.

What to get a Minion loving 7 year old? Despicable Me Monopoly of course - it was a big hit and we've played it plenty already!

Space Killer, the game from Despicable Me where Agnus gets her Fluffy Unicorn. Both Landen and Olivia were able to knock down the space alien with a dart gun and both walked away with their very own Fluffy Unicorn. Landen even enjoyed making up pretend money for them to play the game. 

Despicable Me picnic lunch while watching Despicable Me. 

Landen's favorite gift . . . which he had completely put together in a few hours.

We also celebrated Father's Day with the best dad around.

This past weekend the kids enjoyed camping in our backyard, swimming in the bigger pool and having a campfire.


I told Landen I'm saving this one for his graduation since he thought it was funny to use Olivia's princess tube that barely fit around his torso.



Thus, we've been trying to make the most of these glorious summer days, that are only around for a short while.

On July 28th, we will head back to CF clinic for a very long day. We will start the morning off with our consult with the g-tube surgeon. Immediately following that, we will head over to a different clinic to do the 2-3 hour oral glucose tolerance test (OGTT), as part of a research study and to also rule out cystic fibrosis related diabetes (CFRD). We will then have a lunch break for a few hours and head over to clinic for our cf follow-up in the afternoon. At that time we will have the results from the OGTT. If it's positive for CFRD we will potentially hold off on the g-tube placement and treat the CFRD if her weight is okay. If it's negative, which is very likely, we will proceed with scheduling her g-tube placement surgery.

Summer is such a fun time, we try to make the most of it as it goes so fast but it can also be a bit difficult. It's a time of fun, sun, days spent outside . . . but for a child with cf, in our case at least, it's also a time where Olivia can easily get dehydrated, even with adequate salt and fluid intake. When Olivia gets dehydrated she gets plugged up and then she proceeds to vomit. So do combat this, we are using mirilax more often to keep things cleared out and trying to get her to drink as much water/fluids and get as much salt as we can on a daily basis. This is difficult of course as she's a kid. Just this past weekend, the kids were enjoying their backyard camping adventure, playing outside, swimming in the pool, having a grand old time. The following day, we paid for it. Olivia proceeded to vomit, which wouldn't be all that bad, once it's all cleaned up, but the worst part is that after she vomits, she's afraid to eat and won't eat or drink because she's afraid she'll puke again. So all night Saturday and all day Sunday was spent in fear and frustration because she wouldn't drink or eat much of anything at all. Finally last night for supper she did a bit better but still not up to par. I cringe to think how much weight has been lost, how many precious calories are gone and not being made up. Days like yesterday are days when I know the g-tube will help. Of course it will present a whole new set of obstacles and things to overcome and adjust to, another regimen in her days where plenty of time is already devoted to treatments, another tool to try to offset the progressiveness of this disease another reminder of why we need a cure and why we need it now.