Project: Lockup

Our household is deep into project mode these days. Almost every room is a disaster zone. It seems as though getting organized is requiring me to move EVERY single item we own. Some of our things are moving rooms, others are just being re-stacked to look neater. We’ve been working very hard, and I’m pleased with our progress so far.

Our first project was one that we had been meaning to do ever since we moved in… install closet shelving! We have this little closet under our stairway. It only has a half door so it’s kinda tricky to get some things in there, even though it has lots of space once you are inside.

Closet doorEmpty closet

One of the rules that we have to comply with for licensing is that all medications and household cleaning supplies have to be locked up. All of our CF friends can understand the difficulty of locking up all medications. We had them stashed everywhere they could fit – kitchen cabinets, entertainment center drawer, basket in the end table, upstairs hall closet. Now everything is in one location! It’s kind of a good thing that we never got around to this project sooner because we were able to arrange the shelves in a perfect pattern for this specific purpose.

MedicationsMedical bins

When the licensing agent came to our house for our first home study she said she would be bringing us a small lock box to hold our medications. I tried explaining to her that because Jesse has CF, that would not work since there is so much to store. I don’t think she understood because she said she would still bring it for us anyway. I did explain the closet plan before we did it and she said that would be fine too. The hardest part about keeping medications locked up is that Jesse isn’t even allowed to keep his enzymes out on the table. He’ll have to get used to making sure that not seeing them doesn’t make him forget to take them at every meal.

I drew out how I wanted the shelves to be and Jesse put them in to match the drawing. Didn’t he do a great job?!

Jesse installing shelvesJesse in actionShelf supportsFinished shelves

Then I got to fill my new shelves. The priority was to make sure that cleaning supplies from all the bathrooms and from under the kitchen sink were relocated. Then I needed to make sure that all our medical supplies could stay organized and easy to find. And… there was even leftover space for an extended pantry.

Full closetPrivate pharmacyMedical storageExtra pantry space

When I was finished stocking the closet I just had to sit and stare at how wonderfully organized everything is. Love it! Of course the final step will be to change out the closet door knob with one that has a lock, but for now we are just getting used to everything being kept in there.

Meet the Bowers Family

Yesterday we had the special opportunity to meet another of our CF friends, Kaleb Bowers and his family. It is so much fun to get to meet people after getting to know them online. They read our blogs and we keep up with theirs, A little hope from Oklahoma. They were great and we had fun hanging out with them.

We first came to know the Bowers family about a year ago when Kaleb’s mom, Kristi, came across and commented Jesse’s blog (if we remember correctly). Jesse really connected with Kaleb when he found out Kaleb was going in for his forth sinus surgery, and he was going to have to be in the hospital for his 10th birthday. Jesse’s heart really went out to Kaleb, knowing how not fun hospital stays can be. So we sent a little care package as an encouragement. Then when we found out Jesse would need his tenth sinus surgery Kaleb drew him a picture of a killer whale with all the killer whale facts that we hung on the wall during recovery. They’ve been friends and kept in contact since then.

Kaleb and his family were chosen by the Make-A-Wish foundation to have a fabulous vacation to Florida. They are getting awesome behind the scenes passes to Sea World, Univeral Studios, and some of the Disney parks. And since they are staying not to far from our house, we’ve been planning on being able to get together with them for months. So we drove over to the Give Kids the World resort they are staying at, which is so cool. It looks like the inside of Disneyland, it reminded me of Mickey’s Toontown!

Bowers family

We met up with David, his wife Kristi, Kaleb’s younger sister Hannah, and Kaleb! They were so sweet to bring us necklaces from their Sea World day. Mine is a pink orca that matches with Hannah’s necklace. Jesse got an orca tale that matches Kaleb’s necklace.

Necklaces

We were careful to follow our doctor’s rule for meeting other CFers, especially with Kaleb’s younger and healthier lungs. We kept the three foot rule and even brought masks so that Jesse could give Kaleb a hug. They said they were smiling, in case you can’t tell.

Jesse and Kaleb

Then we all headed out to play some mini golf. Unfortunately, it was raining pretty much the entire time we were playing. Boo! I think it was the first time I’ve been cold during the summer in Florida. It was quite breezy and we were soaked. But we still had fun and it gave us a chance to get to know them a little better.

Mini golfGolfing

Then we all headed back to the Give Kids the World resort to dry off and get some ice cream. They have this cool ice cream shop that is always open for free ice cream. I heard Kristi tell the kids that vacation meant they could eat ice cream all the time. Two thumbs up for that rule!

Ice cream

I know we will be keeping in touch with the Bowers family and hope that we will get to see them again some day. It means a lot to Jesse to be able to be an encouragement to a younger fibro. He always says he wishes he had known someone like that when he was a kid. What a great family, they are definitely very deserving of this vacation!!

CF Riders

Yesterday we had the privilege of meeting the CF Riders! We had Brian, his wife Christie, and their super cute daughter Hayden over to our house to get to know them a little. They were vacationing in Florida and let us know they would be in our area if we had time to meet them. They are a great a couple, we look forward to spending more time with them in the future.

CF Riders

Jesse first met Brian online through a mutual CF friend. They hit it off right away, having so much in common. Meeting new CFers is amazing, there is never a shortage of things to talk about. It’s so cool to talk with friends our age about managing hospital visits and refilling daily pill bottles. Obviously, these aren’t topics that come up in our circle of “normal” friends. Brian was interested in hearing about Jesse’s treatment routine and seeing his aerosol equipment. It was very interesting to hear some of the differences in their treatment plans and medications. Different doctors and different hospitals have varying opinions about the best plans for their CFers.

DREAM BIG, RIDE FREE, BREATHE EASY! That’s the motto for the origination they have founded together. Their goal is to raise awareness and financial support for cystic fibrosis. They’ve been traveling across the country meeting lots of CFers and spreading their message to get their organization off the ground. Be sure to check out the CF Riders website to learn more about them.