Friday, December 31, 2010

Little Mommy and Little Buddy

Peter calls me "my little friend Mommy" and his nickname is "Little Buddy," so I thought that was an appropriate title for such cute photos from a recent Photo Club shoot with my photographer friends including the one who took these, Stacey. The background is white felt and the light is from the flash of the speedlight on my camera. I love being able to get great photos of my family and me with my camera because that means I get to edit them! Stacey is also a very talented photographer and I love having her compose and shoot photos of us.


Thursday, December 23, 2010

Christmas is here already?

It doesn't feel like Christmas around here, not yet, anyway. Lights and decorations didn't make it up, and both Jacob and I have been working like crazy. It's only been for the past couple days that I've been able to get back to our normal schedule, and I've got a huge back log of housework I have to catch up on. So, here it is two days before Christmas and--except for Christmas cards, gifts, and playing Christmas music on the radio--we haven't done anything Christmasy. Sigh. I guess it comes down to the fact that we don't have a lot of time beyond treatments, work, and exercise. That's about all we can do.

Peter has been sick and we are back on TOBI (yeah, he still has Pseudomonas). He's also been on Tamiflu and of course, extra sinus rinses. Treatments and medication have become increasingly difficult to administer because Peter doesn't want to do them. He's always wanting to take a break or refusing to do his nebulizer meds because the mask is wet (from the medicine vapors). Sometimes I have to hold him to do his nebs since he will dump out the medicine if I leave him alone. That makes our treatment time up to 4 hours a day. Ugh, I hate administering those nebs!

Fortunately, he is getting better, slowly. The cough is still there, but the nasal congestion is calming down, and he's not as irritable as he used to be. I know this is the season for colds, but it is a huge burden whenever Peter gets sick. It takes twice as long for him to get better and two or three more treatments/medications per day to treat.

As to Christmas, I am going to put out my favorite decorations tonight. Gingerbread cookies or some other holiday baking . . . might happen. The most important thing right now is to get that treatment schedule back to a reasonable amount of time. Come Christmas, I hope our day is filled with family fun and holiday cheer, not medication and tough treatment time.  

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.

Saturday, October 16, 2010

A Few Portraits (at Clinic)

I have been super busy lately, so haven't had a lot of time to work on the posts about Peter's clinic appointment and Education Day or the fact that Peter grew Pseudomonas again (boo!). But after night of working on client photos, I often reward myself by doing a few pictures for myself. Can you believe these are at Children's against the wall in the exam room? Doctor's offices have the best colored walls for backdrops!

Wednesday, October 6, 2010

Hearing Test at the ENT

We've been doing quite a few doctor's visits the last couple weeks: the ENT, pediatrician's for a flu shot, and CF clinic on Monday (more about that in a later post), plus a dentist's visit yesterday. Peter has done VERY well tolerating all the examinations--sitting by himself and holding still to be examined. Here's a few photos from Peter's hearing test with the audiologist. It was such a good experience, and I'm sure he'll be doing them in the future since some of the antibiotics Peter may be prescribed can cause hearing damage (ugh, side effects).

Peter took this one! Self portrait!

Thursday, September 23, 2010

CF Education Day coming up!

One of the cool things about being involved in the CF community is going to events like this Saturday's CF Education Day at Scottish Rite. As a member of the Atlanta CF Family Advisory Council, I have been part of the team planning this education day. There are going to be vendors (woohoo! free stuff!), breakfast, lunch, and snacks, as well as lots of great speakers. Probably what I'm most excited about is the chance to meet other CF families in person.

I know you can still RSVP by this Friday if you want to attend, so if you are in the Atlanta area and are interested in CF, feel free to come! More information here:

Saturday, September 18, 2010

Frequently Asked CF Questions: Our Medication and Treatment Routine

Over the past week, I've had a few friends ask about Peter's treatment routine. Here's the medication and treatments we administer every morning and evening. All of it takes about 1.5 to 2 hours a day. If you add cleaning and sterilizing equipment, it's a bit longer. As you can imagine, our place feels a little like a pharmacy! Medication is a big chunk of our lives, but we are very grateful there are things that help, even though they only treat the symptoms, not the root cause of the disease. I marked meds with a star (*) if we use the generic.

Nasal Rinse (for irrigation of the nasal passages) and Flonase* (nasal steroid) -- I did a post on Peter's nasal rinse. Check it out.

The Vest Airway Clearance System (to loosen the CF mucus in the lungs) -- It's 40-50 min. a day of chest pounding fun!

Pari Vios Nebulizer (during Vest treatment) -- The compressor breaks up the liquid medication into breathable particles so it can be delivered directly to the lungs. 

Albuterol (to open the airways and allow for more productive coughs) -- This is medication administered through nebulizer, though we only do this one when Peter has a cough or cold.

Pulmozyme (to thin mucus in the lungs) -- This is CF-specific medication administered through nebulizer as well.
Periactin* (to increase appetite), Reglan* (to prevent vomiting), and Bactrim* (an antibiotic since Peter has a cold lately) -- These medications are administered through oral syringes. Can I just say that Target and CVS have the best oral syringes? I've tried all the pharmacies in the area, and since we go through a lot of syringes, I definitely have preferences!

Prevacid* (an acid reducer) and Zenpep (pancreatic enzymes for digestion) -- These pills are opened and sprinkled in applesauce because Peter can't swallow pills yet.

Culturelle (to promote healthy bacteria in the gut when Peter is on an antibiotic) -- This is also sprinkled on applesauce.

Axid* (another acid reducer) and SourceCF vitamins (to supplement the fat-soluble vitamins can't process) -- This are Peter's evening oral meds in addition to his other regular oral medications.

Whew! Can I also add breakfast/dinner, bathing, dressing, brushing teeth, and getting ready for the day/bed? In the morning, if I start right at 7:00, we can get everything done and be out the door right before 9:00. In the evening, I try to start by 5:00 p.m., so we can be done by bedtime, 7:00 p.m.

Friday, September 17, 2010

A Swimmin' Summer!

We must have gone swimming at least once a week this summer. The pool, the lake, the sprayground, a friend's place. Whenever there was a a chance to swim, we took it! Here are some photos from a recent excursion to the lake. We had so much fun with friends!

Tuesday, September 14, 2010

Back to "normal"

Last week we stayed home most of the time because Peter was sick. And now I know. That is not a good idea. I missed running at the gym and having my regular breaks (Peter didn't go to preschool and the babysitter's). Peter was short-tempered and hard to manage, even though we did have a couple play dates at our place. Peter still has a lingering cough, but we've resumed our regular schedule this week. It is much, much better. Next time Peter's sick, I've got to make sure to have some alternate activities for us. Like running together (grin).

Wednesday, September 8, 2010

Sick Day and Thoughts on Antibiotics

I have lots to post about our fun end-of-the-summer activities, but today Peter woke up with a phlegmy cough and his nasal rinse was pretty, uh, productive. No wonder he is coughing so much. I'm hoping it's something that some extra Albuterol and Vest treatments will take care of.

I guess every mom goes through this -- not knowing whether or not their child's cold is really serious or not, but having to cancel school and activities for a day or so until they know whether the illness will get better. I tend to assume it's going to be okay, but jump on the treatments pretty fast so that it won't get any worse.

I take Peter to the doctor if the cold doesn't go away in a couple days, and most times, even if the doctor and I think that it's not serious, Peter will go on antibiotics anyway. We are the exception to the rule about not prescribing antibiotics for a routine cold. We can't risk Peter getting really ill; that could put Peter in the hospital.

However, we also know there is an increased risk of bacteria becoming resistant to antibiotics in a population where those medications are over-prescribed. We just hope that the current practice of not prescribing to the general population will continue. It's the exceptions-to-the-rule cases like us that greatly benefit from not having more antibiotic-resistant infections around. So, the next time you go to the doctor and they don't prescribe an antibiotic for a cold, you can remember how that practice is helping Peter live a more healthy life! Thank you!

Thursday, September 2, 2010

Little Man

Jacob and I had an opportunity to make some portraits of Peter last week. Here's how a couple turned out. Boy, I love my little man!

Saturday, August 28, 2010

Sprayground and Playground

Every weekend, Jacob and I try to give each other a few hours off, a break from Peter and CF care. This morning, I had a shoot for my photography business, so Jacob took care of Peter all morning. Then, the afternoon was mine while Jacob had a break. Here's what Peter and I did:

After a few runs through the water, Peter decided he'd rather play on the nearby playground.

He liked the bridge between the slides the best. He didn't want to go down the slides though.

Okay, back to the sprayground.

Making "paw prints" with the water.

Peter didn't want to wear his admission wristband (only a $1.00!), so I tied it on a loop in his swimsuit. 

Oh, and just a note, I used my simple (and a few years old) point-and-shoot camera to take these photos. Woohoo! It's nice not to have to lug around the big camera! Post processing done in Photoshop.


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