2 Feet. 1 Goal. Outrun CF.

October 3, 2011 By 2 Comments

The Outrun CF virtual race was this weekend. Did you participate? We did… well kind of.

Jesse in new shirt

When we signed up and bought the shirt we had every intention of working our way up to being able to run that day. But then Jesse had to have a minor procedure done on his foot, making him unable to train for the run. Oh well. Neither of us are really runners anyways. We’ve tried to be, knowing that it would be good exercise for both of us, but I’ve never been able to stick to running and running doesn’t agree too well with Jesse’s lungs anymore. We choose other ways to get in our exercise these days.

We did, however, make an effort to cover a good distance walking this weekend. On Saturday we went to a huge community garage sale. We got in a good amount of walking throughout the different neighborhoods. On Sunday we had planned to walk either around our neighborhood or around the outdoor mall near our house. Then we got a last minute invite to Busch Gardens with some freinds, so we definitely got a good amount of walking in going from one end of the park to the other for the rides we wanted to get on. We got in at least two miles between the two days, according to Jesse’s Nike Plus sensor.

So our Outrun CF weekend didn’t go quite as we planned. In the end, Jesse thought it was just as well… seeing as how we didn’t let CF stand in the way of what we wanted to do with our weekend. He outran CF by keeping up with friends and activities on a busy weekend. Take that, CF!!

Filed Under: Cystic Fibrosis Tagged With: , ,

Project: Lockup

July 6, 2011 By 6 Comments

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.

Filed Under: Children, Cystic Fibrosis Tagged With: , , , ,

Cystic Fibrosis: Treatments

May 23, 2011 By 4 Comments

May is Cystic Fibrosis Awareness month! Since I didn’t know anything about CF before I met Jesse, I’m taking some time to learn and share some information about CF.

Most CFers, including Jesse, have a pretty long list of medications that are necessary to stay healthy. We are very fortunate to have excellent medical insurance for Jesse that makes it possible for him to get all the latest treatments available. Many of these prescriptions would cost thousands each per month if it were not for insurance, but we only have to pay the co-pays!

The first treatments Jesse does each morning is a series of aerosols. These are the best type of treatments for cystic fibrosis because the medication is delivered right to the airways and lungs, which is where the problems are. The liquid medicine is poured into the cup on the aerosol head and then forced out through the mouthpiece as a vapor. Each morning he does Albuterol, Colistin, Pulmozyme, Cayston, and HyperSal. Luckily the technology in the new aerosol machine makes each of these only take a few minutes to complete.

Aerosols

The next treatment is the Vest. The vest machine is used to get rid of any gunky stuff that has become attached to the lungs. It straps on like a life jacket and then tubes attach to the front of jacket forcing air through. The percussion effect shakes and clears the lungs. Both aerosols and Vest are done twice each day.

Lastly, Jesse takes a variety of pills that help him get the necessary nutrients that are not absorbed properly from food. Jesse takes calcium, ADEKs (specially formulated vitamins for CFers), fish oil, bisacodyl, mephyton (vitamin K), vitamin D, acidophilus, omeprazole, and azithromycin. This is where I am able to help him with treatments. I actually kinda enjoy portioning out all the vitamins for the week on Saturdays. Plus I do my allergy pills at the same time, only my list is much shorter.

Vitamins

Thanks for taking the time to read and learn about cystic fibrosis this month! Don’t forget that we still have awareness bands available for purchase. If you haven’t bought yours yet it’s not too late… and they’re only $1!

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