Saturday, November 27, 2010


We are back from spending Thanksgiving at my grandparents. Before eating Thanksgiving dinner, we do a fun little tradition. We each have a CornNut on our plate. One by one, we say one thing we are thankful for, and then eat the CornNut. This year Peter was old enough to understand and participate. After a long pause of thinking, he said he was thankful for . . . (can you guess?) trains. No big surprise there.

I said I was thankful for modern transportation, actually modern anything--toilets! Grandpa said that Peter is probably grateful for modern medicine (although he doesn't realize it yet).

But now that I've had a good think, I realize my family, and especially Peter is the thing I'm most thankful for. Peter's busy and funny and full of words and emotions and ideas. Last week I had so much work to do and was feeling quite overwhelmed, but took some time out to sit with Peter, play with him, and enjoy his company. It totally rejuvenated me and made me realize how much I am thankful for my number one job -- being his mom. Here are some of the things I want to remember about the way he is right now:

  • He calls me "my little friend Mommy."
  • He builds elaborate and long train tracks and plays with them for hour(s), everyday. 
  • He loves pretending and talking to his trains, though lately he has been reenacting Dora episodes or saying, "Oh! Swiper's here!" (one of the characters).
  • He has many friends--several boys from church and some girls and boys from preschool. 
  • He is happy to see me when I pick him up from the play center after working out. Picking him up is a real joy!
  • He is still learning how to do a time-out correctly. As for that matter, so am I.
  • He wants to say the prayer at every meal.
  • He can say "három"--with his fingers showing the number three--and "igen" (yes). He knows when Daddy is speaking Hungarian and is learning to respond a little.
  • He is a handful at the grocery store and the library.
  • He loves lollipops, pretzels, and cheese dip. He can also chew gum without swallowing it.
  • He loves reading bedtime stories, especially Choo Choo the Runaway Engine and Put Me in the Zoo.
  • He loves babies. 
  • He gives great hugs. 

Wednesday, November 10, 2010

Time Management for CF Caregivers

First of all, time management isn't something I really excel at, but I want to be better at it, and I have had some success with a few methods I've been trying.

The first tip is having a morning and evening treatment routine. That means we do this every morning and evening in this order without stopping (if we can help it) just about everyday. Before we had it memorized, we had it written out and posted. Ours goes something like this:

Morning (6:30 - 9:00)
Nasal Rinse
Brush Teeth
Oral meds

Evening (5:00-7:30)
Oral meds
Nasal Rinse
Brush Teeth
Prayer, Story, and Bed!

The rest of our day is pretty fluid depending on preschool, running, errands, playdates, etc. I wish I could say we are more organized during the day, but we're working on that! With my photography business, I have to squeeze in client calls, location scouting, and editing in between playing with trains, snacks, grocery and pharmacy runs, as well as housework. Some days I get a lot done, some days I don't (like today). Fortunately, Jacob is doing the evening routine so I am able to get to work a bit! An early bedtime is important because we can generally get work done/relax at night after Peter is asleep.

The second  tip is actually a book: Do It Tomorrow and Other Secrets of Time Management by Mark Forster. It isn't really written for CF caregivers, but has advice that's extremely applicable. I tend to be very disorganized about getting things done. Recognizing that and having tools to address it really helps. Here are my favorite ideas from the book.

Current initiative: Work for 5 minutes (or more if you want to continue) on one project the first thing you do when you get to work. (For us, that means after the morning routine is done). I chose to work on getting my Georgia teaching license. I've made a ton of progress, and it's only been a week since I chose that as my current initiative. I'm excited to move on to my next project in the current initiative slot which is . . . ugh, FSA paperwork.

Closed Lists: Instead of creating an open-ended "to do" list, use a closed "will do" list  (which means it's a LOT shorter). Also, since you will do everything on the list, you don't have to worry about which order you do it in. It's really helped me focus during the day. Here's another article based on the closed list principle:

Do It Tomorrow: Incoming work from the current day gets actioned tomorrow unless it is a genuine emergency or unless it is the nature of your job to take care of it right away. Then, tomorrow's work is already planned and scheduled. This especially helps with email, paperwork, and requests from other people.

Like I said before, I'm still working on my time management, but I figure I'll get it manageable if I keep learning! Being off of TOBI in a few days sure will help.

Saturday, November 6, 2010

Fall Update

If I haven't updated the blog, you know we are very busy at the Butler home -- school, work, church, and of course medicine and treatments take priority over this, but it's Saturday! I'm taking a little break from working to make sure I capture some of what's happened lately at our place.

Pseudomonas. First, Peter is still on TOBI (an inhaled antibiotic) for the Pseudomonas infection. We will know in a couple weeks if it worked or not. He tolerates the treatments fine as long as we get them done before he gets too distracted by toys and playing in the morning/evening. Peter's aunt sent him a bunch of Elmo and kids DVDs her kids are done with, so we have been enjoying some new movies during treatment time. His favorite is Elmo Visits the Doctor. Thanks Stacey!

Digestion issues. If you follow us on Facebook, you know that Peter has had some recent issues with his digestion. They seem to be resolved now, but it was pretty scary for a couple days when his BMs were as greasy and foamy as they were when he hadn't been taking any enzymes. Turns out that taking away one of his antacids wasn't a good idea. He's back on it now and is doing fine.

Growth and Weight. Peter has really grown a LOT this summer. He weighs 35 pounds and is 38.5 inches. The really awesome part of that is that his BMI is at the 70th percentile! He's getting a little tummy and some extra weight around the face. CFers with a bit more weight tend to do better lung-wise, so that's great. They were thrilled at CF clinic!

Running. Peter and I ran in the Big Pumpkin Run (a 5K) last week. It was a blast. Peter got out of his stroller and was my "pacer" for a chunk of the race. I was so proud that my little CFer was running with me! I first took up running so that Peter would grow up with the kind of physical exercise that would help his lungs. It seems to be working so far.

Preschool. Peter loves going to preschool. It's only one day a week, but I also take him to the gym play center when I run 2-3 times a week. I also trade off with another mom for home preschool/play dates. It's great that he gets lots of play/learning time with other kids, and I've really noticed how much he's matured with that experience and interaction.

Halloween. Since Halloween was on a Sunday this year, we decided it was probably best to keep it really low key. The week before, we dressed up and went to our church's Trunk-or-Treat. He decided on his own that he wanted to be a cow. I made the costume since he didn't like the store-bought one we got. A couple patches of felt and a tail on a black sweat suit made a costume under $3.00! (We already had the sweat shirt and pants.)

Church Nursery. Much to our relief, Peter has done fine in the regular church nursery (even though they aren't as strict about colds/disinfection as we would like them to be). So, we don't have to have a separate class for Peter at church, and he enjoys playing with the other children his age. He will go belong to his first Sunday School class after the new year. We're so excited for Peter to be a "Sunbeam" (the name of the class).

Dentist. Peter has an awesome dentist and hygienist who have worked with him for about a year. He has monthly fluoride varnish treatments because the medicine can cause more rapid tooth decay, and this week he was able to get a cleaning with little fuss. He liked it so much that I pretend to be the dentist and double check his brushing.

Energy. In general, things are good. Peter is a playful, happy boy. We spend a lot of time playing with friends, trains, and cars. He is getting to be helpful in the kitchen and spent a good hour or so with me yesterday cleaning and washing the car. His energy level is (and has always been) very high, so we sometimes are worn out by Peter before the day is through. Sometimes I'm very glad to strap him into his Vest so he'll calm down for a bit!

Control. Of course, control is a very important part of growing up, so sometimes Peter is tough to handle when we have to do something he doesn't like. Trips to the store have been difficult, and sometimes Peter yells at his toys because he can't get a train track to go together or a play food item won't fit in a pot. (Seriously, he lost it over that yesterday.)

Mommy and Daddy. Peter's dad and I are very busy with work and other responsibilities outside of home. I have had a photo shoot almost every weekend for the past month and a half which is very busy for me, and Jacob has been working on some videography, green screen filming, and animation for a local kids' football team. We are really glad to have time together at home and have left this weekend pretty open so we can be together.


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