Monday, December 27, 2010

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!
  9. Terrific
  10. Good work
  11. Good for you
  12. That's better
  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
  28. That's it
  29. That's good
  30. Congratulations
  31. FINE
  32. Right on
  34. Perfect
  35. Outstanding
  36. Good remembering
  38. I like that
  40. You remembered
  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!

Monday, December 20, 2010

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."  

     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!