99 Positive Strokes

I was going through the bookcase tonight getting rid of books and college notebooks.  I came across the paper "99 Positive Strokes" in one of my Occupational Therapy notebooks.  Basically, it's just a list of encouraging words to say to people.  I felt it is appropriate (plus it's my blog - ha) to post here because of all the tough, "grown-up" stuff the kids/people with CF have to endure every single day. * I did tweak this a little because there were actually a few duplicates!

99 Positive Strokes

"Encourage the people in your life (both children and adults) with as many positive "strokes" each day as possible." 

1. That's right
2. That's the way
3. You're doing fine
4. Now you have it
5. Exceedingly well done
6. That's great
7. GREAT!
8. FANTASTIC!
9. Terrific
10. Good work
11. Good for you
12. That's better
13. EXCELLENT
14. Good going
15. Keep it up
16. WOW!
17. Much better
18. You are so smart
19. Good thinking
20. SUPER!
21. Exactly right
22. Nice going
23. Way to go
24. Not bad
25. SUPERB!
26. Keep on trying
27. WONDERFUL!
28. That's it
29. That's good
30. Congratulations
31. FINE
32. Right on
33. TREMENDOUS!
34. Perfect
35. Outstanding
36. Good remembering
37. FABULOUS!
38. I like that
39. MARVELOUS
40. You remembered
41. SENSATIONAL!
42. You did it that time
43. That's a good boy/girl
44. Good job, Bill/Jane
45. That's really nice
46. Keep up the good work
47. That's much better
48. You make it look easy
49. I knew you could do it
50. Doing beautifully
51. That's the way you do it
52. You've got it made
53. You're learning fast
54. You're on the right track now
55. You're doing a great job
56. You did a lot of work today
57. Now you've figured it out
58. Now you have the hang of it
59. You're really going to town
60. That's coming along nicely
61. You out did yourself today
62. That's the best you've ever done
63. I've never seen anyone do it better
64. You are doing that much better today
65. You're getting better everyday
66. Keep working on it, you're getting better
67. You're really working hard today
68. Nothing can stop you now
69. You are very good at this
70. You've just about got it
71. That's quite and improvement
72. That's not half bad
73. You haven't missed a thing
74. That's the best ever
75. You did that very well
76. You've got that down pat
77. You're really improving
78. Well, look at you go
79. I'm very proud of you
80. You figured that out fast
81. I think you've got it now
82. You really are learning a lot
83. You certainly did well today
84. That's better than ever
85. That was first class work
86. You really make my job fun
87. You are so awesome
88. That's the right way to do it
89. I'm proud of the way you worked today
90. I'm happy to see you working like that
91. Couldn't have done it better myself
92. One more time and you'll have it
93. You've just about mastered that
94. You've go your brain in gear today
95. Now that's what I call a fine job
96. You must have been practicing
97. Congratulations, you got (#) right
98. It's a pleasure to teach you when you work like that
99. That kind of work makes me proud of you

The Best Clinic Visit Ever

   Tripler Army Medical Center is where Rachel goes to the hospital.  She has a great team to help her manage CF.  Usually clinic day is not one we really dread, but it's not something we look forward to either.  We've gotten into the habit of making special treats for the CF clinic team.  I think between seeing Rachel and her unique personality and the treats, they look forward to seeing us.  Hehe. 
   I'm a little late in sharing this, but November 18 was Rachel's last clinic day and it was one to remember!  Oh, what a great day.  No tears, wonderful news, and lots of laughs.
   The appointment started with the usual vitals which are no longer a problem for Rachel.  She used to have issues with the blood pressure cuff.  Nurse Laura always does the vitals and chats with Rachel about what she's been up to.  Then we see Nurse Carol.  She came in that day wearing her paw print scrubs and socks and she had a stuffed puppy dog for Rachel.  Rachel loved it and said (in her sweet Southern tone), "Awe, it's so cute.  Thanks."  We talk about how Rachel's been doing.  Nurse Carol asks if I have any concerns.  I say, "No.  She seems to be doing really well." (it's been over a year and she hadn't even had a cold or cultured any bacteria from the throat swabs).  Then Nurse Carol asks Rachel, "Hey Rachel, do you want to do your throat swab now and get it over with so you can play with Julie or later?"  With only a little coaxing, Rachel picked "now".  Nurse Carol finds Julie (child life specialist).  Rachel chooses to sit in a kiddie chair all by herself (instead of my lap), she holds my hand, I count to three, then she closes her eyes and opens her mouth.  I was so proud.  No crying.  She did make sure to says how much she doesn't like throat swabs.  I said, "That's fine Rachel, nobody likes them." Rachel sits with Julie and they do their own thing and talk about CF stuff.  We see respiratory, the dietitian, & I talk to the endocrinologist (I had questions regarding CF related diabetes - Rachel doesn't have it - just wondering about it). While I was talking to the doctor about CF diabetes, Rachel notices him (he's rather tall & has big feet) and tells Julie that he looks like a penguin.  They laugh and when I heard the story I laughed.  My silly girl.  Last we see the pulmonologist.  He came in and I said, "It's been a good visit.  So, don't bring any bad news!" ha  He says he's not.  He chats with me first, asking if I have any concerns and how Rachel is doing.  Again, I have no real concerns.  I did ask him about her recent annual abdominal ultrasound.  He said it was normal.  I was amazed because last year's results her liver was classified as a "fatty" liver and it been slightly enlarged since birth.  I questioned the "fatty" liver classification and he said, "Rachel's ultrasound was classified as normal.....a normal liver."  Not a normal CF liver, but a normal liver. Period.  I was on cloud nine.  So, after the ultrasound chat, the doctor pulls out Rachel growth chart...specifically the weight one.  He kinda timidly talked about where they like the CF patients to be on the chart and how Rachel is at the 95th percentile.  He goes on to talk about added calories.  I cut him off and say, "Hey, if I need to stop feeding her so much, just tell me.  I'm not offended one bit."  I think that is something a parent and a person with CF would love to hear.  Usually, people with CF struggle to maintain a healthy weight.  So, after my chat with the doctor, he examined Rachel.   We left the CF clinic team with the goodies we brought and got the heck out of there. 
  So, to recap - a throat swab with no tears, normal abdominal ultrasound, excellent growth (especially the weight), and there's a penguin like doctor in the pediatric clinic!......oh yea, and a super happy Mommy!

So there, CF!

One Super Fun Treatment For CF....Hawaiian Style!

     Every year, about twice a year Mauli Ola Foundation comes to Hawaii to take people with CF surfing.  Why surfing?  "Surf Experience Days (MOF) were created to get kids who have cystic fibrosis out into the ocean water (which is high in saline) and experience what natural therapies can do for their lungs. The exercise and fun they get from these events is truly fantastic. What is even more amazing, kids who have cystic fibrosis respond very well to the salt water environment. The saline in the air and water breaks down the congestion that is in their lungs. This congestion is what causes them to go to hospitals constantly and leads them to have to take lots of medication on daily basis. With salt water treatments, their hospital visits are cut down in half, leading to a healthier and more fulfilling life with fun activities." http://www.mauliola.org/  

     December 5th and December 12th, Mauli Ola's surf experience days for Hawaii.  It is so awesome.  Mauli Ola goes above and beyond to make the experience extra special for each kid/person with CF.  They have professional surfers and other professional athletes to take the kids out surfing.  They always have gifts for the kids.  We only see the Mauli Ola guys twice a year and they always remember us.  It's so nice and such a great day when it's CF surf experience day.  Rachel had the time of her life! 



Mauli Ola Foundation staff and volunteer surfers.



Rachel getting surfing instruction from Gavin Beschen.

This is how she started out.  What a ride!

Up on the board with Gavin.  Just look at that smile.

Rachel and Gavin. 

Rachel chatting with Gavin. 

Rachel going out with Shawn "Barney" Barron.

Rachel and Barney.

On the board with Barney, trying to stand on her own.

Rachel and Barney, she's just about got it. 



Rachel and Barney.


Thank You Mauli Ola.  Y'all are the best!

 

"The Power of Two" - A Twin Triumph over Cystic Fibrosis

I just finished reading this book today.  It really is a good book.  The story of twins living with CF and the ending is good.  I'm not a reader but I couldn't put this book down.  I got all caught up in their life...how strong they are, stubborn, sarcastic, driven, full of life ....how they fought CF and were determined it would not win in their battle.

I just thought I'd share. 

Our "Beginner" Waterfall Hike

Last Saturday, Rachel and I decided to go on an adventure.  We really haven't been exploring the island lately and we were long overdue.  So, I Google'd "hiking Oahu" and of course I get tons on sites.  I picked the one called Hiking Oahu.  There were several hikes listed on the site.   I settled on one that we haven't done and that said it was an easy, beginner hike.  At the end of the trail, there is a waterfall and you can swim there.  I'm thinking, "That's great!  We'll hike and then splash and play at the waterfall." 

So, next, I start getting directions and make sure I have a pretty good feel for where it is.  Then, I pack our backpack of water and towels.  At last, we hit the road.  We were headed to Maunawili Falls Trail.  It's on the windward side of the island near the Koolau Mountain Range (I think those are the correct mountains). We're so excited. 


We made it.

  Ok, so, we made it to the trail and started our adventure.  Little did I know, it was definitely going to be an adventure. Also, at the trail head, there were warning signs for leptospirosis.  I'm thinking, "What, the web site says you can swim at the waterfall?"  I had to break the news to Rachel that we wouldn't be swimming here. She was pretty bummed.

Rachel at the trail head.

 This is what the hike started out looking like (below).  I'm thinking, "Yep, this is an easy, beginner hike."

The first little stretch of the trail.

Oh, how my thoughts quickly changed.   We got just a little ways and it got ugly.  There was mud and lots of it...the kind of mud you step into and can't see your feet.  There were big, wet, slippery tree roots everywhere.  There were big boulders we had to climb over.  We had to cross a stream two times.  We had to climb many, many steps and quite a few very steep ones, too. 



Poor shoes.



A few of those monster roots.



Only one of the many times we climb up and over boulders.



First time crossing the stream.



Even though this ended up being no beginner hike and especially not ideal for a 4 year old, we went ahead and hiked it. The whole way to the waterfall and back, Rachel never once complained, acted exhausted, or short of breath - she never asked to stop and rest.  I actually had to tell her we were stopping for a water break.  She was such a trooper.  At one point in the hike, we were going up some pretty steep steps and a boy (around age 9) passed us.  He was huffing and puffing.  This was a moment that I was especially proud of Rachel.  She hiked this trail like it was no big deal; except for the mud - she had issues with all the mud. ha. So, that day I felt like she conquered CF along with that "beginner" hike.  What a great day and adventure we had. 



Yay!  I did it!



I was expecting a little more for the hike we made!
But it's still pretty.



Water dripping into the stream.



Don't know what this is, but it looked neat.



Pretty flower.



View from the top.



Such a beautiful place.

Where's My Script?

Oh, dear.  Frustrations with the pharmacy....or should I say - military pharmacy.  The doctor puts in the prescription.  You go to the pharmacy, take a number, wait and wait and wait some more (just imagine your at the DMV - now you know the pain), and then they FINALLY call your number.  Yes!  I've been chosen.  Get to the window.  Tell the window clerk or pharmacy tech or whatever they're called who the prescription is for.  Then they usually say, "Is it for the TOBI or Creon, etc.?"  I say, "Yes"   Then they go off.....WAY in the back.  Stay gone for a while longer.  Remember the long DMV like wait I already had.  It's not like in the civilian world, your doctor has put in a prescription at a pharmacy and they fill it when it comes in....so, when you get there it's ready.  Imagine that?  Anyway, all that, only to have them say, "Oh, we'll have to order that.  I'm at a hospital that has an approved by the CF Foundation CF Clinic."  It's like being at a cancer center and they don't carry the cancer medications.  Ok.  So, after two and a half years, I've grown used to this and from within the hospital, I call the pharmacy to see if the medication is in stock.  I can get this accomplished long before they get to my number.  That's the love you get with a new prescription.  So, now,...if you call in a refill....it more than likely will be just as painful.  Ok, you call in for a refill, you get this automated system, press 1 for this 2 for that, etc.  Once, you've placed your order it tells you it'll be ready the next day after a certain time (varies for the different military refill pharms.)  If your lucky, you'll get a person that has a brain to fill the prescriptions and will call you to let you know they are out of stock and it'll be at the most a couple days.  Most of the time I get the dumbs ones....or simply the ones that don't care that you just drove 10 miles specifically for this.....not to cruise around Schofield Barracks.  lol  After many a headaches and telling the pharmacy staff how sorry their system is, I'm armed with direct phone lines (lucky pharmacy staff, huh. ha) and a new system for obtaining the much needed prescriptions for my little girl. 

New Prescriptions -
1.  If it's a med. Rachel's never had before, I ask her doctor, "Is this medication a rare one or do you believe it'll be in stock?"  If the doctor sounds unsure, I call the pharm. (All hospitals numbers are always with me in a day planner specifically for Rachel's appointments and care.)
2.  If I get to the pharm. and the staff tells me we only have x amount of the medication.  I have them double check that it is clear in the computer that we are leaving with a partial fill & I try to make sure that they have it right, so when I call in to that fabulous refill system, I can get the rest. (it's still hit or miss if they do it right)

Refills -
1.  After calling in a refill, on the day and after pickup time (Rachel's meds should now be ready), I always call (the direct line) and ask that it's ready....not just ask that it's ready but physically in the box ready for me to take.....and yes there is a story there! lol


So, the bottom line is, I must never go to the pharmacy without having called first and speak to a living soul. 

After Rachel's diagnosis, I would have never dreamed we would have never ending battles with pharmacy and hospital staff.  I'm just amazed and not in the good way. Anyway, I just had to vent!

When You Play House With A Little Girl That Has CF.....

Cookin' Up Something Great

The other day I was cleaning out the spare bedroom and found a my little play apron my mom had made for me when I was a little girl.  I showed it to Rachel and she said she wanted to wear it and "cook" us something in her kitchen.  I tied it on her.....and she looked so cute I must say.  Off she went to her room.  I could hear dishes clinking and food "cooking" on her stove.  She comes back maybe 10 minutes later and gives me pretend juice.  She says, "Here Mommy.  I brought you some juice.  I thought you might be thirsty.  Now, don't drink it all because you have to save some for enzymes."  Boy that sounds familiar.  (smile on my face)  So, I only took a sip or two.....just as I was told.  Then here she comes with "food" on a plate.  "It looks delicious!", I say to her.  I start to "eat" and she quickly says, "Don't forget your enzymes!  You don't want a tummy ache."  I said, "You're right!  Thanks for reminding me.  Ok, can I have my enzymes?"   Then she hands me "enzymes" and says, "Mommy they're just pretend."  We both took our pretend enzymes and ate our pretend food (with lots of calories) and nobody got a pretend tummy ache!  Only from a child with CF.


Time to Eat



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

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

gymnastics



at the aquarium in Maui



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.

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

OUR PRESCHOOL HOMESCHOOL BLOG 

This is a really great blog and if you have a preschooler at home, it's worth looking into.  

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.