"Hey, Jessie!"

Debby Ryan's
dressing room.

On April 3 Rachel got her wish granted.  She got to meet her favorite actress, Debby Ryan (from the Disney show "Jessie").  The Make-A-Wish foundation granted Rachel's wish.  In addition to meeting Debby (& actually the entire cast of the show), Rachel got to do many other activities; going to Six Flags and iFly Hollywood were her favorites.  Rachel is very thankful and thrilled that she got this once in a lifetime trip/opportunity.  

(I couldn't put any photos of Rach with the cast because they were filming the season finale & it could give it away.)....after the finale airs I'll post some more pics.

Thank you Make-A-Wish Hawaii, it's volunteers, & everyone else that made Rachel's wish come true. .... ..

Dr. Edwards for the referral, Emily & Kale'a (Rachel's wish granters;they were perfect for Rachel), Dave and Buster's for the awesome send off party & amazing gifts, Hawaiian Airlines for the fantastic in flight shows, dessert, & cockpit tour, Anthony the LA limo driver that gave Rach a cuddly teddy bear, and the LA Make-A-Wish greeter for meeting us at the airport & the nice gift.

Emily & Kale'a
Rach's wish granters

Gifts from Dave and Busters
send off party

Jessie set

In the elevator

"Tony" the doorman

in the "screening room"

Central Park

Empire Skate Building
Central Park

Jessie's bedroom

Jessie's bedroom

Ms. Kipling
"Frank" 

iFly Hollywood
Universal City

iFly Hollywood
Universal City

Eating at one of her favorite restaurants
"The Melting Pot"

My Rachel

Today we were waiting for Rachel's Tahitian dance class to start and this lady came up to us.  First, she started chatting about the girls' blue eyes.  Rachel quickly said to the lady, "I like your necklace."  It was a beautiful cross necklace.  The lady turns to me and says, "You're raising your girls right. You really are doing a good job."  I thought how nice and said, "Thank you.  You must have talked to Rachel before."  She said that she had and that Rachel has always said very nice, sweet things to her.  I'm not writing this post to brag about Rachel but I wish I had a dime for every time someone went out of there way to tell me what a special, sweet, thoughtful, outspoken, kind, caring girl she is.  I really feel that God has a special plan for her.  Every time she meets someone new, she treats them like they are already a friend or family.  She is always trying to do kind things for others in need.  Currently she's been helping me come up with ideas for fun things to get for the kids in the pediatric ward at Tripler, she's helps me pick out food to take to the food pantry at church, with much thought tries to pick out the perfect stuff to go in the Operation Christmas Child boxes because she knows that small filled shoebox will probably be the only gift that child gets for Christmas, and she even puts her own money in the donation boxes at the grocery stores check out lanes. Rachel prays for everybody she knows (especially if they are going through something) and many times doesn't even pray for herself.  You would never know she's fighting her own battle against CF.

About Baby Amelia

Amelia
Napping on the beach.

I wasn't really going to post about this.  My original thought was, "It's no body's business."  Then I thought, "Well, people that follow this blog may be curious and just interested to know."

After Amelia was born, we had blood work done to check for CF.  The hospital does the newborn screening but since there is CF in the family, I requested the blood work.  I wanted to know even if she's was a carrier.

So, after a couple weeks or so, we got the results from both.  Amelia does not have CF but she is a carrier.

I think it good news that she doesn't have CF, but I would love her just the same if she did.

My Sweets

I "Heart" Chest Therapy

Aah.  The soothing sound of chest therapy!

The first time Rachel did chest therapy with Amelia home......Amelia was out like a light!  It works just about every time.  I was not really surprised that the chest therapy machine made her fall asleep.  It was the volume blasting on the tv that I thought would bother her.  I suppose Amelia was used to hearing the chaos for 9 months.  So, now, if Amelia is fussy and it's close to chest therapy time, I ask Rachel to go ahead and do chest therapy to  help Amelia fall asleep.  Rachel is more than happy to help (my sweet girl).  We have a win, win, win here.  Rachel gets chest therapy done (kicks CF butt), Rachel helps baby sis and Mom, and baby sis falls asleep.  That's why I "Heart" Chest Therapy!

Rachel's First Hospital Admission

   After Rachel's February clinic visit, the doctor called to tell me that she had cultured a bacteria.  We treated with an oral antibiotic and went in for a follow-up throat culture.  The next throat culture grew the same bacteria plus another.  So, to make a long story/phone conversation short,...it was decided that for Rachel's best interest she would be admitted for iv antibiotics.  I was a mess.  She had managed to make it 7 years without having to ....go there.  It was kinda funny that most of the Pediatric Ward staff thought we were new to the island because they've never seen us.
   We get to Tripler around 10am on March 19.  We had an awful start to our first experience with this admission.  The computer system went down and the admissions staff acted like they wanted us to leave because they couldn't get their computer to work.  I told them that we weren't going anywhere, the Pediatric Ward was expecting us, and for them to get out the pen and paper & do it the old fashioned way.  The person that was supposed to be working our admission didn't care for that, but you know what....it's her job whether her computer is working or not!  You don't turn patients away.
  After the first day of  Tripler's computer chaos, things went pretty smoothly with the Pediatric Ward care Rachel received.  I had issues with other departments within the hospital.  I won't bore you with those details; Tripler has received my 6 page write-up on that.  Tripler probably has a photo of me that they throw darts at!  hehe.  
   I wanted to share some pictures of Rachel and her stay.  I wanted to share how she passed the time and tried to make the stay fun.  Rachel was able to have friends visit and she got several passes to leave the hospital.  She absolutely LOVED talking to her friends on "her" room phone.

Talking on "her" phone.

Painting while getting iv's.

Child life took Rach to a "secret" garden.
Rach being artsy with sidewalk chalk.

A window marker drawing of a rattle snake
eating a hotdog.
Who knew?

Music therapy came by.
Rachel had to use her feet too!

Chest theapy, watching a dvd, and about to
open 3 new toys that child life gave her.

Rach with the iv pole....well,... being
silly Rach.

Doing nails with child life.

Shhh.....nobody knows about this...
Rachel figured out how to turn her bed
into a slide.  

Sliding down.

Down and ready to go again.

I believe it was Tripler's nursing department that put on
an Eggstravaganza the day before Easter.
Rachel got to go and have fun there.
Here she's doing the bunny hop with her dad.

I'm with Rach at the water balloon toss.
It was about the only thing I could do.....
hopping, running, and jumping is out for me.

Rach wasting no time making the
cotton candy disappear.

At the Easter egg hunt.

She found a prize egg!

On Easter morning.....the Easter bunny
found her at Tripler.

One of the many picc line covers
we decorated.  We just couldn't have
plain white. 

Rach flying a butterfly kite. 

   I'm praying for another 7 plus years of no hospital stays.  It was "ok" for a hospital stay
 but it sure wasn't home.

My One December Post In January

Wow!  It's been a while.  December was a very busy month.  December 1 : we participated in a CF 5K Fun Run on North Shore.  December 2 : Rach and I went for our traditional Christmas tea at A Cup of Tea tearoom.  December 7 : we went to see Rachel's friends perform.  December 8 : Miss Rach went surfing with the Mauli Ola Foundation.  December 12 : Rach and I took a peppermint cake and sausage balls to the CF clinic for Christmas.  December 15 : we set sail for our 7 day Hawaiian island cruise.  December 22 : back from cruise but no time to waste.....had to hit the commissary.  December 24 : nice quiet evening at home resting and waiting for Christmas.  December 25 : woke up, looked in our stockings, Rach saw what Santa left for her, did chest therapy, sang "Happy Birthday" to Jesus, opened presents, ate breakfast (or shall we call it lunch!), and just took it easy the rest of the day.  December 26 : I had my 20 week ultra sound.  December 27 - I had an OB appointment.  December 31 : we all 3 managed to stay awake to bring in the new year....celebrating with sparkling apple cider! 

CF 5K Fun Run

Rachel surfing with Rochelle
Mauli Ola Foundation

On the cruise....sail away pool side party.

On the cruise....sail away pool side party.

On the cruise....sail away pool side party.

What a way to kick CF butt - on the balcony of a cruise ship!

 

Silly Rach at the Seahorse Farm on the Big Island.

Seahorse Farm, Big Island.

Rach holding a seahorse.
Seahorse Farm, Big Island.

Rach found a nice wahine to hula with.

At Keoki's Donkey Balls
(chocolate mac.nuts).

Rach found a fake person to get a pic with.
It's just what she does!

In the beautiful dress Nana gave her.

Sunrise and chest therapy
out on the balcony.
Being funny.

Sea arch, Kauai.

Waimea Canyon, Kauai

Rachel's favorite towel animal.
The Snake!

It wouldn't be a Hawaiian vacation
without shave ice.

View from our balcany
leaving Kauai.

Family photo.
Dressed up for dinner.

Rachel on the red carpet.
Everyone wants her picture!