Tuesday, November 20, 2012

Save the Date: Atlanta GA 2013 CF Walk

Save the Date! We would love for you to join us on Saturday, May 18, 2013 to walk for Peter! Help us pound out CF. Contact us and we'd get you more information about the walk.

Tuesday, September 25, 2012

Thursday, August 9, 2012

Letter to Kindergarten Teachers about Cystic Fibrosis Care

Every school year, I've posted our CF Care letter to teachers so other CF parents can use/modify it for their own use. Well, it's that time again. Here's our letter to Peter's kindergarten teachers:

Dear Teachers and Nurses:

Peter has cystic fibrosis (CF), a life-shortening genetic disease that clogs his lungs, digestive system, and sinuses with thick sticky mucus. CF is not contagious and does not affect Peter’s mental abilities. However, some accommodations are necessary to keep Peter as healthy as possible while in your care. Although Peter has a serious health condition, we try to keep life as normal as possible. Let us know if there is any other information we can provide to make his time with you a positive experience!

Thank you,

Marchet and Jacob Butler

Peter does not have any food allergies that we know of, but before he eats, he must have medicine. His body can’t digest proteins, fats, starches or complex carbohydrates on its own. So, he takes pancreatic enzyme supplements (Zenpep) to help his body digest his food. The only exception is water, fruit, juice, or treats that have only simple sugars in them.

Right before a meal, open 3 capsules of Zenpep on applesauce. Peter cannot swallow pills yet, so we open the capsules in applesauce so he can swallow the capsule contents. Stir them in a bit and have Peter eat the applesauce and enzymes. He should swallow the Zenpep “beads” without crushing them. He does not need to eat all the applesauce, just enough to get down the capsule contents. For a snack, he only needs 2 capsules of Zenpep. The medicine works for about an hour, so if it has been an hour since he has eaten last, he will need more Zenpep before he eats again. We are happy to provide applesauce for Peter’s medicine.

Please make sure he washes his hands before he eats and wash and sanitize any surface he eats off of. At mealtime, please allow Peter enough time to eat all of his food (or encourage him to eat all of it). Kids with CF have a high calorie, high fat diet due to the body’s decreased ability to digest food. Because of this, high calorie foods should be encouraged. He may also need to have extra snacks if he starts losing weight. Please bear this in mind when you teach healthy eating habits--Peter's diet should include healthy, nutritious foods, but he needs to eat high calorie, high fat foods as well to maintain his weight. We use whole milk, butter, cheese, dipping sauces, gravies, and mayonnaise liberally. 

No Exposure to Others with CF
Peter should never be in the same room with other people with CF. This is because they could infect each other with bacteria or viruses that thrive in the mucus of a CF patient. If there is another person with CF in the school, we request to be notified.

Hand Hygiene
Frequent hand washing is critical because it is the best way to prevent colds. A cold can turn into a lung infection for Peter, which might require hospitalization. Cold/flu season is a tough time and we do the best we can. We appreciate your strict sickness policy; that will help Peter stay as healthy as he can through the school year.

When doing activities with shared scissors, glue, markers, etc., please ask Peter to sanitize his hands after the activity is over. The reason for this is to reduce his odds of contacting a cold or virus from other children especially during flu season. If infection becomes a problem, we can provide his own set of craft supplies.

Peter may require more frequent bathroom breaks or may express a sudden need to use the restroom. This is due to the digestion issues with CF. He is potty-trained and will tell you if he needs to go to the bathroom other than the scheduled bathroom time. If Peter complains that his stomach really hurts, it is usually because he needs to go to the bathroom, and sometimes he needs to be reminded of that.

As CF progresses, Peter may cough frequently; it is his body’s natural method to clear his lungs of mucus. The cough is not infectious. Peter should not be asked to suppress coughing or stop coughing. He should be directed to cover his cough into his elbow or tissue (not his hands). Sometimes Peter may need to cough up phlegm and spit it out. This helps clear his lungs of the mucus that clogs his airways.

On rare occasion, Peter vomits when his stomach has to get rid of the mucus that has built up there. He also has a touchy gag reflex. If Peter vomits, he is usually just fine right after he has washed out his mouth with a little water. Unless accompanied by a fever or other symptoms, vomiting does not mean Peter is sick.

Peter loves to be physically active. In fact, exercise is one of the best ways to keep Peter’s lungs healthy, and we try to exercise everyday. During physical exercise, please make sure Peter gets plenty of fluids. CF causes him to sweat more, so dehydration can be an issue. Please allow him extra water breaks if necessary. Also, during exercise, he may be short of breath or tire quickly. In that case, he may need to stop the activity and/or use his inhaler.

Helping Classmates Understand CF
It's okay to let my Peter’s classmates know about his CF as long as it is done in an appropriate way:
·         “Peter has to take his applesauce and enzymes to help his body use the food he eats.”
·         “Peter has to cough to keep his lungs healthy. It helps get the yucky stuff out.”
·         “Peter has something called CF. He was born with it. You can’t get CF from being around him or playing with him.”
Please do not tell the children or Peter that he is going to die of CF. We do not know what the future holds for our little boy or for the treatment of CF. We hope someday there will be a cure. We would also be happy to come into the classroom to teach about CF if needed.

Peter may come in late on occasion due to morning respiratory treatments and medication. We will do our best to make sure he is on time. However, it takes up to an hour each morning to complete his medication and treatment regime and that may increase if he has a lung infection or cold.

Peter may be absent due to illness more than other children. He also has frequent doctor’s appointments as well as quarterly CF clinic visits.

If Peter has an increased cough or labored breathing, you may administer inhaled Albuterol (Ventolin HFA) at school. He should inhale 4 puffs as needed every 4-6 hours for increased cough or congestion. Shake the inhaler and insert it into the spacer. Administer a puff, holding Peter’s face to the spacer mask, then wait until Peter has breathed 6 breaths. Repeat in the same manner for the remainder of the puffs. If Peter uses his inhaler frequently during a week, then I will take it home to clean it at the end of the week.

Sinus Rinse/Nasal Steroid
Peter has chronic sinusitis due to CF, especially in the winter. We frequently use sinus rinses and a nasal steroid to help clear out the mucus so he can breathe. If this becomes necessary, we will provide instructions for administering this treatment.

Saturday, June 30, 2012

Pirates and Summer Bucket List Update

Thought I'd revisit the bucket list today to make sure we are getting everything in. As you can see, we've made a good start, but Peter definitely is craving more because he told me he missed school! This week, we'll probably be going for the swimming because it is SOO hot lately. I just bought two bottles of sunblock, and I'm sure we'll use them up!

Meanwhile, we're staying cool inside eating mayonnaise sandwiches (well, Peter is) and watching Jake and the Never Land Pirates. Here's Peter's impromptu costume!

Summer Bucket List Update
1. Swim, swim, swim (and swim lessons)
2. Lots of play dates and park dates!
3. Hikes and nature walks
4. Tie dye t-shirts
5. Drive-in movie and/or kids movies
6. Day trips to places in Georgia we've never been (Chattanooga, Amacalola Falls, Kennesaw Nat'l Battlefield Park, Mall of Georgia, Cordele)
7. Cooking fun at home
8. Water balloon/squirt gun party
9. Clean out storage unit
10. Visit train museum
‎11. Go to lake
12. Camp out
13. Make fun snacks
14. Do science experiments
15. Visit friends we haven't seen in a while!

Other things I've done/will do this Summer
16. Make homemade pirate and cat costume
17. Babysit for friends
18. Organize files (in process!)
19. Keep up with couponing
20. Purge and organize home (in process!)
21. Model for 1940s vintage photo shoot
22. Keep busy with my photography business (in process!)
23. Go on dates with the hubby :)

Tuesday, May 29, 2012

Depression Explained

As I have previously posted, we deal with depression in our home -- not just "ho, hum" bummed out kind of depression -- but a serious, debilitating disease called major depressive disorder. My husband had been battling this disorder before Peter was diagnosed, but certainly the stress of having to provide and care for a child with an expensive and life-threatening condition has worsened it.

I feel like we are in "depression recovery" right now (thanks to medication and therapy), there are still periods of extreme melancholy where his depression does the talking like tonight: "I wish I had cancer and could die and leave this all behind." These depressive periods usually last only about 3 or 4 days, but they are tough on everyone.

At this time, I often feel a need to search out more education and support. It's helpful to remind myself that yes, this is a disease; it's not something to be ashamed of, and I'm not alone.

I really enjoyed watching this video from Stanford University tonight. In it, Dr. Robert Sapolsky explains both the biology and psychological roots of major depression in an interesting and often humorous way. If you have someone in your family or a friend who deals with depression, please take a look. I think you will appreciate this as I have.

Monday, May 28, 2012

Summer Bucket List

We are so excited summer is finally here! Of course, we are looking forward to all the great activities we have planned. But summer is always better for Peter health-wise: less allergies, less exposure to sickness, more outdoor playtime, etc.

Right now, he's really having a hard time breathing through his nose and the swelling in the sinuses has cause a an inverted eardrum, so his ENT has put him on a daily dose of Flonase to help ease the pressure. He sounds like a mini-Darth Vader when he's really struggling. Poor little guy! I hope this summer, we'll get back to a healthier state for Peter.

I remember when Peter was younger, I really struggled with what kind of activities to expose him to, especially if there were going to be crowds, smokers, too much heat, etc. Now, I'm not so nervous. We just are smart about bringing a stroller in case Peter gets too tired. We also pack extra water, snacks, applesauce and enzymes, sunblock, and a hat. I also don't mind going up to smokers and asking them to smoke elsewhere. (They are usually very nice about it). I try to have as normal a life as possible with Peter, and my summer bucket list is one way I'm trying to do that. Here it is!

Summer Bucket List

1. Swim, swim, swim (and swim lessons)
2. Lots of play dates and park dates!
3. Hikes and nature walks*
4. Tie dye t-shirts
5. Drive-in movie and/or kids movies
6. Day trips to places in Georgia we've never been*
7. Cooking fun at home
8. Water balloon/squirt gun party
9. Clean out storage unit
10. Visit train museum
‎11. Go to lake
12. Camp out
13. Make fun snacks
14. Do science experiments
15. Visit friends we haven't seen in a while!

Today, we went to Amicalola Falls as a whole family since Jacob had the day off of work. (Two items on my summer bucket list!) We only hiked up to the bottom of the falls, but boy, it was a climb. Jacob was a trooper and pushed Peter in the stroller. Then, Peter got out and ran up and up, and then up and up the stairs to the top. I am so proud of him! Afterwards, he got an ice cream to replenish all the lost calories from the hike. Now that's the CF way!

Friday, May 18, 2012

Wear Purple for Peter: Walk Weekend!

It's walk weekend for us! The Altanta, Portland, Fort Worth/Arlington, and Mobile teams are walking for Peter! We are so excited. If you haven't registered and want to walk with us, join a team here. If you would like to support us, choose a walker to sponsor here.

Atlanta walkers, you can find the details for our walk here: http://www.facebook.com/events/325653674172327/

Whether you are walking, donating, or simply showing support, please wear "Purple for Peter" either Friday, Saturday, or Sunday and then upload a picture to the Peter's Pavement Pounders wall on Facebook. A shirt, a scarf, a hat, or a ribbon . . . anything will do! Show your support for Peter and cystic fibrosis awareness. On Facebook, you can change your profile picture to something purple! Then tag your picture with Marchet Butler, Jacob Butler, or Peter's Pavement Pounders.

Oh, and if you aren't a fan of Peter's Pavement Pounders on Facebook, give it a "like"!

Wear Purple for Peter

Thursday, May 3, 2012

2012 Images for Posters or Signs

Here are some images I put together for walkers to print out for their walks. If you haven't signed up for the 2012 Great Strides in your area, do it now. We'd love to have you represent Peter and our family as we fight for a cure for CF. If you can't donate, but want to support us, please donate. Any amount is welcome.

Sunday, March 25, 2012

Peter in his Vest with a Train . . . in its Vest!

The other day, Peter wanted his favorite train to have a Vest too. A little blue craft foam and a few strokes of a Sharpie, and viola! Train with a Vest.

Tuesday, February 14, 2012

Save the Date

I can't believe it's almost been another year since our last Great Strides walk! We'd love to invite all you to sign up to walk with us this year--in Atlanta if you are local--or with another of our branch teams. So, mark your calendars for a Great Strides walk near you, and help us pound out cystic fibrosis.

Saturday, January 28, 2012

Upcoming Clinic

Sooo much has happened since my last post. Peter has changed schools (yay!) and things are going better, if still bumpy. This week we have CF Clinic and we're looking forward to the yearly X-ray to see if Peter's lungs are staying as healthy as we hope.


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