Benson and Claire were born with a rare genetic disease in which their liver produces too much oxalate--called primary hyperoxaluria. Claire's condition has progressed much faster than Benson's. She was on dialysis since she was 3 months old and for much of that time, did dialysis 3 hours a day, 6 days a week. She receive a much needed kidney / liver transplant on December 18, 2009. It is expected Benson will eventually need similar transplants.


Wednesday, May 16, 2012

our camping adventure

Well, camping was an adventure, as expected. Just not quite the adventure we were expecting! And worst of all (okay maybe not worst of all)...I packed about 3 of everything in the house except for the camera. So you'll just have to imagine the smiles...and I'll have to remember.

We had a great time! It was so beautiful--plush green, perfect temperature, and it was Monday night so NO ONE was there except for us! The kids loved riding their bikes on the trails, which they easily did with us just watching them from the campsite. Claire made up her own little trail with a ramp and needed me to watch her over and over and over and OVER again!! She was darling and so proud of herself for going (kind of) fast down the ramp. Benson put himself on a mission to collect as many nuts/seeds from trees as possible. Once Mabel caught onto the idea, she even helped him with his collection. He probably ended up with over 50 after wandering just about everywhere in sight! And Mabel was in heaven. She loves dirt. sand. gravel. laundry detergent. flour. tang. anything she can pick up, have run through her hands, and make a mess with. So she found her own little sandy/dirt spot and played for hours (baby-time...so like 5 minutes) until she went on to the next adventure!

Benson's football went under the truck once and he was very distressed about how he was going to get it out. He reached to grab it with a stick but to no avail. He got distracted by something else, and then next thing ya know, Mabel comes crawling out from under the truck with the football in hand. He was so proud of her! So happy! And so surprised that a ONE year old was all he needed to get his football back! "Mabel just wants to have fun, right Mom? She doesn't care if she gets dirty. She just wants to have fun." And that's pretty much the truth!!

And Jared and I took our reading material, hoping, thinking, wishing, we might have a minute to relax and sneak a few pages in. It was fun to think about and nice to have just in case...but we were kept busy otherwise!

We went on a big bike ride Tuesday morning, 5 miles into Lanesboro, and the kids loved playing at the park, seeing the ducks, having a picnic, and getting some ice cream. Just about the time we were ready to make the journey back to the campsite, Claire started getting miserable. She slept in the bike trailer aside snoozing Mabel, but still didn't feel great when we were back at the tent. She was hot (like the rest of us) and had a hard time cooling down. After she slept, uncomfortably, for another hour or so in the tent, we decided we better change plans and head home instead of staying another night as we first planned. Benson was especially disappointed, but understood the drill.

So we packed up and headed home. I'm glad we came home, though. She needed a good night's rest, air conditioner, and a cold rice pack. And we were thissssssss close to taking her into the ED last night. She didn't have a fever when we first got home but then did a few hours later, 38.2. After talking with the doc, Jared showered and had his hospital bag packed and ready to go. We got her out of bed and were ready to throw her in the car, but decided to take her temp one more time because I thought she felt cooler than before. Sure enough, she was back down to 36.6. We tried the other arm pit (confirming our shock) and it was the same. So we put her back in bed and check on her the rest of the night...and the fever never came back. She slept great. I'm sure you can imagine our sigh of relief and gratitude that she (and we) avoided yet another late night ED visit. She must have just been exhausted, maybe had heat exhaustion....or who knows what. BUT I guess she got whatever she needed and her body worked it out on it's own. Phew.

Ya just never know with little Claire. It could be nothing. It could be something. But each time you have to expect it's something until proven nothing. She's just too fragile. Too unpredictable. Too precious. And things change fast for her. She's good at keeping us on our toes...keeping us moving....keeping us wondering....keeping us praying!!

So we had a great beginning to our week (feels like it should be the weekend) and she has felt great all day today. She's wanted to learn/practice piano today and was begging me to practice with her much of the day. I should soak up that begging to practice now before she becomes a teenager! And to top the day off, a little ride for Miss Mabel on the Super Blooper always spells FUN around here!



2 comments:

Grandpa Terry and Diana said...

Glad you got to go camping for one night. sometimes that all you get. And we have to make the most of it.

Glad Claire didn't get too sick and that hopefully she is doing well.

~adelle said...

We should go camping together sometime! Lets put it on a checklist. :)