Sunday, August 29, 2010

Positive Affirmations Are Powerful

     I wanted to tell you about a simple, but powerful thing I do with Rachel.  I whisper positive affirmations in her ear while she's doing chest therapy.  It just hit me one day.  I thought, "Rachel might like to hear what a great job she does.".  I know I feel good when someone says something positive or good about me.  So, here are some things I say to her while she's doing her chest therapy or if she brings up anything in regards to CF --

1.  Rachel, you do such a fabulous job taking care of your body.
2.  That is a perfect "huff and cough"!
3.  You should be so proud of yourself.  You are doing a great job with your new nebulizer.  That's big girl stuff!
4.  You really know how to kick mucus butt!  I know mucus is shaking in it's shoes.
5.  I notice what an awesome job you do keeping your body healthy.
6.  You rock, Rachel.
7.  You are so smart.  You know exactly what it takes to stay healthy.
8.  Great job asking for enzymes.
9.  You are awesome!  You just swallowed 2 big pills at once!  Mommy can't do that.
10.  Wow! You ate all your supper! Now your body will have lots of energy to fight CF.

   So, this is just something a came up with......I'm sure there's someone out there that discovered it before me (ha), but this version I came up with.  I hope it can help.

practicing the nebulizer without the mask

Thursday, August 19, 2010

CF Doesn't Hold Her Back!

When I think about Rachel, hmmm...all I can think is "WOW".  Let's see, she's 4 and has experienced so much.  She's taken advantage of many opportunities than have come her way.  She is such a spirited girl....and a bit of a "thrill junkie".  She's been on more than 10 flights, she's been surfing with the pros, bungie jumping (kiddie style), swimming with dolphins, fed birds from her hands, adult rides at Disneyland (if she was tall enough she was on it) -the faster the better,.....I could go on and on.  I just pray that she continues this trend and doesn't let CF get in her way.  I pray she stays healthy to continue on these wild adventures!!!

Go Rachel!  Keep it up Babe! 

bungie jumping in Pittsburgh

feeding birds at the aviary in Pittsburgh

Old Pali Road hike on Oahu

Great Strides walk Honolulu 2009

Waimea Falls hike

surfing with Mauli Ola Foundation on CF Surf Day 2009

surfing with Mauli Ola Foudation on CF Surf Day 2009

getting her bounce on at gymnastics


at the aquarium in Maui

Monday, August 16, 2010

Getting Creative with Medical Compliance

I wanted to share some of the ways I've managed to keep Rachel compliant with her medical care.....and with a smile on her face!  The CF patients are now required to wear masks inside the hospital except for the examine room.  The day I was told this and gave Rachel a mask, she wasn't having it.  I said, "Hey, look at this mask you get to wear.  Why don't you go ahead and put it on?"  She promptly said, "No Thank You".  "Well, crap!", I thought.  How am I going to get around this one?  So, I thought long and hard and then it hit me....."We'll make it into a disguise!"  Why it took me over a week to think this one up is news to me?  So, I spent quite a while on the computer searching for free printable children's masks.   After I saved a few, I asked Rachel to come to the computer.  I said, "Rachel, wouldn't it be so fun to wear a dog mask to Tripler and trick all the doctors.  They will never guess it's you.  They'll think I brought my dog to clinic."  As I had prayed she'd respond, she said, "That's a great idea!  We'll trick them good."  "Hallelujah", I thought.....I managed to get through round one successfully. We talked about it off and on for a couple months (we brewed a really good plan to trick everyone). When we were about a week a way from the next clinic appointment,  I printed a dog mask.  While Rachel colored it, we talked about our plan and what we thought everyone at clinic would say.  She was so excited.  Once the dog mask was colored, I cut it out and stapled it to the mask Rachel had to wear to clinic.  I worked like a dream!  She wore it with pride, we "tricked" everyone, Rachel was happy and so was I.  Whew.

Some other things I do with Rachel are -
1. We call Prevacid and fluoride tablets "puppy treats" (Rachel loves  pretending to be a puppy).
2.  I don't call her medications, medicine.  Enzymes, pills, vitamins.  It upsets her to call them medicine.
3.  "Kicking Mucus Butt" is what we are doing when Rachel does chest therapy & breathing treatments.  She
      likes this.  I'll say, "Ok, go get your vest on so you can kick mucus butt.  We can't have mucus winning,           can we?"  She usually says, "NO WAY!"
4.  Also, during chest therapy & breathing treatments, I let her pick a show to watch.
5.  I give Rachel choices.  I give her the choice to pick puffer or nose spray first, bath before or after chest            therapy.....lots of choices even not related to her medical care because there is so much she can't have a          choice about.  She gets to choose her clothes (within reason -ha), how she wants her hair (puppy ears or          down), grilled cheese or hot dog for lunch, you get the idea.
6.  We talk.  Rachel is beginning to ask about CF.  She asks, "Mommy, did you have CF when you where a        little girl?"  "Do my friends have CF?"  "Why was I just born with CF?"   She will also say, "I don't like              having CF."  "I don't like mucus in my lungs."  Thoughtful questions from a 4 year old.  So, when it's on her      mind, I stop what I'm doing and we talk.    I acknowledge her feelings first and then we talk about the hows      and whys (the best way I know how).
7.  After a clinic, we do something fun - an afternoon at the beach, ice cream, playground, Chuck E Cheese (a      favorite lately), etc.  Try to mix some fun in with the not so fun.
8.  When I'm feeling really brave, I let her practice throat swabs on me.  The doctor gave us extra swabs so           she can practice on her dolls & me -ha.  We role play.  I've started having her speak up to the doctor              before throat swabs and ask him, "Will you please be gentle?"  I think she feels she has some sort of say.
9.  We play doctor sometimes.  She has a doctor set with all the tools.  She really likes getting to be the doctor      for a change.
10. We don't harp on CF!  We do what we have to do and get on with our day.  Even on our worst days, we       try to have some kind of fun. And we do have bad days occasionally.

So, There you have it.  That's what we do around here.  Try to make the best of it.

Sunday, August 15, 2010

Preschool At Home

Rachel is starting week two of  preschool at home.  It's going good so far, except for having to get up early.  We start our day by getting up by the alarm at about 6:45.  We get ready, go downstairs, get a drink, and get the treatments started.  The norm is ....."puffer" (inhaler) and nose spray - wait a few minutes then Rachel starts the hypertonic saline (breathing treatment) and chest therapy.  After the first ten minutes is done, she does some practice coughs to try to get some mucus out (it's a work in progress).  Then she does pulmozyme (breathing treatment) and another ten minutes of chest therapy.  When that ten minutes is done, she does another round of practice coughs.  Then it's the last ten minutes of chest therapy. Done!  Now we get to eat breakfast and start school at 9:00.  Our schedule is 1- daily lesson, 2 - story/poem/song, 3 - snack break, 4 - activity/craft, 5 - computer time, 6 - exercise, 7 - lunch and school ends at 12:00.  It's working great for us so far.  I had really hoped it would because I really don't want to send Rachel to school just yet.  The plan is to home school through her younger years.  When she can prove to be a good advocate for herself and somewhat responsible for her health, she will have the option to go to public school .  I'm not confident that the school would look after her best interest.  Most people don't know what CF is or completely understand how complex it is.  So, that's where we're at with the school topic.  I welcome any comments, tips, or advice you may have....especially if you have CF or are a parent of a child with CF.   

Our preschool curriculum was taken from
This is a really great blog and if you have a preschooler at home, it's worth looking into.  

Saturday, August 14, 2010

Our Story

     I'm a mom of a sweet & very funny little girl, Rachel (4).  Rachel was diagnosed with cystic fibrosis (CF)  at 6 months.  Rachel has to do a lot to keep herself healthy.  She currently does 2 breathing treatments (one of them twice daily), chest therapy (to keep mucus from building up in her lungs), an inhaler, a special multivitamin, 2 pills to keep her liver healthy, 2 pills just before each meal & 1 before a snack, and 2 antacid pills......all this everyday.  She goes to "CF clinic" for a routine check-up every three months.  At clinic, Rachel sees a pediatric pulmonologist, a nurse, a respiratory therapist, a dietitian, a social worker, a  gastroenterologist , a pediatric psychologist, & a child life specialist.   She gets a number of chest x-rays, abdominal ultrasounds, and bronchoscopys.   Rachel had 3 different lung infections last year.  It's a lot and this really isn't all.  It's a pretty good start though for those who don't know about CF.  
     Having said all of the above, Rachel is just about the happiest little girl I know.  She is very sweet, funny, and thoughtful.  She is learning more and more each day how to take care of herself.  I've begun to let her do some of her own care and get her ideas on things.  She's hit some milestones this year.  On New Year's Eve, she began swallowing pills whole.  We were all excited about that.  For one, she was only 3 and learned how to swallow pills.....and for two, that made my life easier because that meant no more crushing pills or breaking them open and hiding them in applesauce.  She is beginning to talk to the doctors and other practitioners about herself.  I really encourage that because I want her to learn early that she needs to be her own advocate.  She can start her chest therapy/breathing treatments after they've been set-up.  
     Having to deal with CF and the gloom it brings, we try to keep a positive tone in our life.  We do what we have to do and get on with our day.  Sure, it's hard sometimes, as there is no cure for this deadly disease and the current average life expectancy is only 37....but I feel "feeling sorry" for Rachel would do her no good. 
    I had planned for this blog to serve as a form of awareness for CF and a place for people with a connection to CF could go and look around.  So, bare with me....I'm still building my blog.  Hope you have a great day.