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