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.

Thursday, August 26, 2010

First Day of Preschool

Peter’s first day of preschool was great. Our morning started out with medicine and treatments (including the Vest while Peter watched some of Cars). It was raining hard in the morning, so we took our “I’m going to preschool” picture inside. And off we went!

Checking in to preschool was a little tricky since his regular teacher--with whom I’d already talked about Peter’s CF accommodations--was gone for Jury Duty. I demonstrated enzyme administration with the substitute. The director also came down to the classroom and had me sign a form so Peter’s enzymes could be administered by the teacher. (In addition to this, I’d had a doctor’s letter about Peter’s enzymes faxed to them a week or so earlier.) Finally, they secured the enzymes in a lockbox so no other children would accidentally take them. I had left a copy of the letter of CF care instructions I'd written at home. So, after Peter was busy playing with the other kids, I ran home to get it. Forty-five minutes after we arrived at preschool, Peter was finally checked in!

When I came and picked Peter up, his teacher said, "He was a pro!" And it seems like everything went pretty well enzyme-wise too! Preschool is only be one-day-a-week this year, but we are also doing a home preschool with another little friend another day during the week. The school year has begun!

Wednesday, August 25, 2010

Letter to Preschool Teachers about Cystic Fibrosis Care

This week, we start a one-day-a-week preschool for our little CFer. At the open house a week ago, I gave the teachers a guide to caring for Peter. (I borrowed much of it from Lisa C. Greene's excellent Letter to Teachers about My Child's Special Needs). Feel free to use and adapt my version. I was able to fit it onto the front and back of one sheet of paper. It had a very positive response.

Dear Teachers:

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 or emotional abilities. However, some accommodations are necessary to keep Peter as healthy as possible while in your care. Although Peter has a serious health condition, he acts like any other child his age and is excited about going to preschool. 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!

Marchet and Jacob Butler

Peter does not have any food allergies that we know of, but before he eats anything other than water, fruit, juice, or treats that have only simple sugars in them, 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.

For a meal, open 3 capsules of Zenpep on applesauce or other fruit sauce. Stir them in a bit and spoon-feed them to Peter. He should swallow the Zenpep “beads” without crushing them. (Peter sometimes has to be reminded of this.) 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.

Peter sometimes has a hard time swallowing his medicine. Try one or two beads in the applesauce at first, then give him extra applesauce to wash it down. Continue until all the beads have been swallowed. Sometimes offering a sticker or a little toy helps motivate Peter to take his enzymes.

Please make sure he washes his hands before he eats and wash and sanitize any surface he eats off of. At lunchtime, 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. He may need to have extra snacks if he starts losing weight.

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. If another child is obviously sick (green runny nose, fever, etc.), it is especially important to enforce your sickness policy.

When doing activities with shared scissors, glue, markers, etc., please sanitize Peter’s 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.

On rare occasion, Peter vomits when his stomach has to get rid of the mucus that has built up there. He generally will start crying and gripping his stomach like he is in pain right before he throws up. He sometimes can make it to the bathroom in time, but having a bowl on hand would be a good idea. 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.

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 an hour and a half each morning to complete his medication and treatment regime and that may increase if he has a lung infection or cold.

Currently, Peter is not having coughing issues. However, 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).

During physical exercise, please make sure Peter gets plenty of fluids. CF causes him to sweat more, so dehydration can be an issue. We would appreciate it if he could keep a water sippy nearby. Using communal water fountains is not advisable.

Monday, August 23, 2010

No Pseudo!

Peter's Pseudomonas culture results are in! Pseudomonas is gone. Hopefully for a long time! No more TOBI and Cipro (at least for now). Treatments and meds are so much easier without that extra hour of TOBI. He is culturing MRSA, however, a common CF lung-dweller. No treatment required for that one though.

Tuesday, August 17, 2010

Throat Culture

Peter got his throat culture today at Children's to check if he still has Pseudomonas. On the way home, he told me his version of what happened:

"I say, 'Ah' an' a doctor hurt me. I cry. I very sad."

Poor thing! No one likes throat cultures. Peter got some stickers and apple juice afterwards, though, so he brightened up very quickly.

We'll know the results in about a week. Meanwhile, it's been very nice not to be on TOBI. That's an extra hour a day we don't have to spend tethered to the nebulizer!

Saturday, August 7, 2010

My CF Parent Self-Care

This summer has been wonderful! I've actually enjoyed my roles: Peter's mom, CF caregiver, photographer on the side. Perhaps it's because I've identified that those are my roles (by my choice) and have stuck to them. I haven't been busy with other things. And although that's meant I've had to turn down worthy causes and activities, it's also meant I actually have time to take care of myself.

A book I would recommend to any CF parent is Parenting Children with Health Issues by Foster W. Cline, M.D., and Lisa C. Greene (a CF mom). One of the first principles the book covers is self-care. This passage really stuck with me:

"Parents of ill children need time alone and away to 'regroup' from the chronic stress of care. However, the more severe the chronic illness, the more physically and psychologically difficult it is to simply drop problems and participate in an activity that renew the individual and/or enhances the couple's relationship. Coping with a child's day-to-day health problems complicates respites and get-aways for the following reasons.
  • The more difficult the child's health problem is, the longer the 'wind-down' must be before the getaway is truly restful.
  • At the same time, the more difficult the child's issue, the harder it is to leave them for longer periods." (p. 8)
At first reading, I thought, Oh great. I need more rest than regular parents do! I also thought, There is no way I'm going to be able to do that.

Well, it's been a year or so since I originally read this, and I think I've found some ways to incorporate self-care into my life. Here's how I'm doing:

Running Club and the Gym. I like exercising--when I'm doing it--but it's so hard to get to unless you have a reason to go other than you ate too much and can't fit in your jeans (sigh). So, I joined the Running Club at my gym and go running with a group of ladies who now ask if I don't come! Peter is old enough for the gym daycare that I don't worry so much about him being around other kids and catching something. So, we go at least 2 or 3 times a week for mommy exercise/Peter playtime.

Swimming with Peter. There is nothing better than swimming at the pool in the hot Atlanta weather. Love it, love it, love it. We've also set up a weekly swim date with one of my friends from Running Club and her kids.

Early bedtime. A friend of mine suggested that I try putting Peter on an earlier bedtime schedule since he had started skipping naps, so now Peter is in bed by 7:30 or 8:00 and I have the rest of the night with my husband! It's awesome. We start  his Vest at 5:00, then Tobi for a half hour, dinner and oral meds, bath, nasal rinse/steriod, prayer, and song. The routine really helps and he's generally asleep 10 minutes after he's put to bed. (He usually sleeps 11-12 hours and is awake for 12 hours.)

Babysitters. In the spring, my husband and I went out for our first "long date" which meant someone else had to do all of Peter's night treatments and meds. As I was writing out the instructions, I realized, it's not that hard. Anyone can learn to do this! So, we regularly go out now and have some reliable babysitters "trained" on Peter's treatments and bedtime routine. We even had one of them do his morning routine when we went on a Photo Walk in Atlanta. Now, we are planning two days and a whole night away. We are so excited, and I already have the babysitting instructions basically done!

Friends and Phone Calls. It's important to know other people have been through/are going through what you are dealing with. I've gotten to know other CF parents and just parents in general. Their advice and encouragement has been very helpful. Since we don't have family in the area, we rely on friends for local support and resources.

Play Dates and Play Trades. Since Peter is an only child, he gets pretty lonely without anyone to play with. So, we regularly go over to friends' houses/have them over here for play dates. Sometimes friends watch Peter so I can go to an appointment or just have some time to myself. A lot of times I will invite a friend's child to play with Peter at our place. Peter does a lot better during the day when he has had a friend to play with.

Therapy. Last year about this time, I visited my sister and she suggested my anxiety and depression levels were out of control, so I made the decision to get some help. I have a great therapist who has been working with me. He is the one who prompted me to carve out time for myself, to get on a regular sleeping schedule, and look at the reality of my life, not just the irrational fears I have for the future. It is hard to be a parent of a CF child, and having professional help has made a huge difference in how I view our family's present and future.

Reading and Books on Tape. Lately, I've realized that I'm not much of a movie or a TV person. I'm not much of a game person either. I love to read, though. And I love to listen to books on tape or CD. So, when I need to wind down at night or I need a little "me" time in the day, I'll curl up with a book and read for a while. Listening to books during the day while I'm doing housework also helps. I try to keep the books appropriate for my little "reader" to hear too.

Vacations and Time Away. This summer, we went to Portland for my brother's wedding. Then, after the wedding, we hung out with part of my family and did tourist stuff in and around the city. It was the first real vacation we've had since Peter was born. The greatest part was having another family to trade off watching the kids with. Both sets of parents got a night out, and the kids enjoyed having company. At home, Jacob and I decided that we both need some time away on the weekends from everything -- from work, from CF, from Peter, from each other. So we have been incorporating at least a couple hours each weekend for one of us to have time alone to do whatever--shopping, resting, reading, or taking photos. It's really helped.

There's a little checklist in the Parenting book about self-care:

"We encouage wise parents to take good care of themselves by:
  • Enriching their relationship by taking vacations together away from the children, as well as taking individual breaks from the stress that full-time care of a chronically ill child can impose.
  • Ensuring they have bi-monthly or weekly date-night.
  • Ensuring the available respite care and support systems are in place.
  • Refusing to tolerate children's disrespect.
  • Modeling their ability to handle frustration and difficult time.
  • Making good nutrition, exercise, and sufficient sleep a priority." (p. 10)
I've got room to improve! (particularly in the nutrition and the date-night areas) But I'm not going to be disappointed that I'm not "there" yet, because after a year, I am doing so much better. Peter deserves to have role models that take care of themselves. After all, that's what we want him to do for himself one day.


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