Traveling with Cystic Fibrosis

December 15, 2011 in Filed Under: Cystic Fibrosis, Travel 6 Comments

Remembering everything you need to bring when traveling can be challenging for anyone. As you can imagine, it gets even more difficult when you have an arsenal of Cystic Fibrosis medications and equipment to bring along. For years Jesse chose to ignore CF and skip most (or all) treatments when traveling so we’re just now getting the hang of how to pack everything he needs. After a couple of successful trips this year, I thought I’d share some tips we’ve learned for our CF friends who are traveling for Christmas…

  • We try to pack all medications and related supplies in one suitcase. It just makes sense that this is the best way to make sure we have everything and it makes it easier to unpack when we get to our destination. When we travel by air we keep this as our carry-on bag so that there is no risk of it not arriving when we do. When we travel by car we want to make sure that none of the meds get left in the car if we don’t bring everything into the hotel room, and risk them overheating.

Meds bag

  • Also when traveling by air… we like to get a letter from clinic stating that all of the medications, supplies, and equipment are necessary for Jesse to travel with. The meds bag usually gets flagged and checked out pretty carefully (understandable) and we like to make sure we will get through with the needles and all the liquid vials. We also like to make sure we will be allowed to keep the Vest machine and CPAP machine with us as extra carry-ons since they are too expensive to replace if they were to get lost somehow.
  • Since the last two trips were road trips, I just brought the entire container of weekly vitamins. We were gone for more than two weeks both times and it was much easier to fill the pills container like usual instead of trying to count them all out ahead of time. And of course… it never hurts to bring extra Zenpep!

Vitamin container

  • We like to have a separate cooler, other than our food cooler, for the refrigerated meds so that it isn’t getting opened and closed all day. When get to our hotel I empty the meds into the fridge and refreeze the ice packs for the next day.

Cold meds

  • Lastly, Jesse has gotten used to finding a treatment chair to unload all of his stuff when we get where we’re going. The most important part is making sure the treatments actually get done. It’s hard when you’re busy being on vacation, but he feels so much better during the activities of the day when he has done them.

Treatment chair

That’s what works for us. Anyone else have some helpful tips to share?

Farm Favorites

October 29, 2011 in Filed Under: Family, Travel 2 Comments

Fall trees

We’ve had a nice visit here with Grandpa and Grandma Sipes. The farm is so peaceful and quiet, I think it’s almost impossible not to feel rested after spending any amount of time here. I sure do love being here each time we come. Even though we are ready to be back home, it’s always hard to leave. We plan to be on the road early tomorrow morning. In between packing up what we can today, I was looking through some of my favorite pictures from the last week.

Red leavesYellow woodsSoy beansDandilionLady bug on tirePear tree

Jesse has really enjoyed the few small projects he got to work on in the barn with his dad and his grandpa. Grandpa completely returns to his old self when he’s out there working with his hands.

Working on tractorJesse driving tractorGpa in barnGpa with tractor

Jesse has taken hundreds of amazing sunset pictures. Several nights this week he was out after dinner taking pictures of the sky.

SunsetsSunsetSunset 3

One of our most favorite meals is Grandma’s beef and noodles. We got to open up some of the beef we canned the day before for lunch yesterday. I brought my own noodles to make with my portion. We just couldn’t leave without having that meal.

Beef and noodles

Jesse earned his keep by doing one of his favorite chores: trash burning. I’m not sure it qualifies as a chore for him… he has too much fun doing it.

Jesse making fireJesse burning trash

It’s been below freezing when we wake up the last couple of mornings. Jesse got some pretty neat pictures of the frost covering the farm before the sun had a chance to warm things up.

Frost on grassFrost by the barnFrost on wind vane

Possibly my favorite picture of the week is one of Grandpa and Grandma. Jesse and I have plenty of great marriage examples to aspire to, but theirs is definitely at the top of the list as it is one of the longest. Jesse and I just have to giggle when all Grandpa has to do is look over at Grandma for her to know what he wants, and she’ll get up and get it for him. I guess that’s what happens when you’ve been together as long as they have. They’re amazing!

Gpa and Gma in chairs

Canning Beef – Family Style

October 27, 2011 in Filed Under: Family, Travel 4 Comments

I’ve helped Grandma Sipes can several different foods now. When we left here last time I said we would have to can meat next time, since we hadn’t done that yet. Sure enough, we were able to fit that into this trip. It was a family affair… we each took turns cutting beef and stuffing the cans, Grandma added salt and arranged the cans in the pressure cooker, Grandpa sharpened the knife periodically as it got dull, and Jesse was behind the camera documenting the process.Beef to canEmpty cansMildred cuttingMe filling cansGrandpa sharpeningMe cuttingMe cutting 2Jerry cuttingGrandma adding saltGrandma filling pressure cookerMe adding cansGrandma sealing pressure cooker

Fast forward about two hours…

Cooked beefGrandma emptying cookerGrandma emptying cooker 2Finished cans

The beef sure smelled good when it came out of the cooker! We had enough to make 18 cans, plus extra to put in the freezer. Grandpa and Grandma should get plenty of meals out of all that meat. Yay for more canning!

This post was linked to Domestically Divine, Teach Me Tuesday,and Hearts for Home. Be sure to check out their blogs to see what many other fabulous women have shared.