Monday, April 14, 2014

"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

iFly Hollywood
Universal City

iFly Hollywood
Universal City

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

Thursday, February 27, 2014

I'm a Slacker

     This past year has been so, hospital visits/admissions, homeschool, after-school activities, holidays, making craft sets/gifts for Tripler's pediatric ward, and then lots of visitors.
     I've been busy, yet a slacker in doing my part for the Great Strides walk.  Really I'm so fed up with CF and had begun to get burnout with the whole planning of the walk that now I'm not interested anymore.  I'm still fundraising but only half@ss!
     If there was ever a time for me to be happy about getting the walk together it should be now.  Now, that a friend has taken the reigns and I don't have all the responsibility.  All I have to do it send a few emails and make a few phone calls.  That's it!  Easy....I know. I just don't want too!
    I think I need a break.....a break from being so involved with any CF related events.  I will still go but I want to just show up and enjoy the festivities......Like everybody else does....CF'er, CF parent, or not.
    I have mostly enjoyed organizing the walk and have definitely enjoyed watching it grow.
    Anyway,, that's my rant.

Rach at GS 2013
with Star Wars characters.

Wednesday, February 5, 2014

Long Time No Post!

Sisterly Love
     Wow!  Where do I start?  October was my last post. Since then Rachel has had her second admission at Tripler & home on iv's, the baby had to have a head CT, Rach had a bronchoscopy, we had Rachel's uncle visit, surfing with Mauli Ola, breakfast with Santa, busy Christmas time, Auntie and GG visit, & Nana and Gramps visit.  I'm tired!  Loved having the visitors but I'm a little tired of crap stuff happening.
     Rachel's Tripler admission was by far much better than the first.  I eliminated the huge problem I had the last time.  I requested to do Rachel's breathing treatments and chest therapy, so respiratory therapy was out of the picture. I also had another request which was.....- no new or inexperienced nurses.  As far as dietary or shall I say the "kitchen/cafeteria", I figured I'd surrender and bring in a gallon of whole milk for Rachel.  And was really an issue.  Rach spent 6 days in the slammer and came home on iv's the night before Thanksgiving.  Can I just tell you how "Thankful"  I was (I'm sure Rachel too) to just be home with my family on Thanksgiving?!  It puts it all into perspective.  We ended up with a warm welcoming invitation to our friends house for Thanksgiving.  One of my dear friends and Rach is good friends with her daughter.
     Amelia had to have a head CT because the doctor suspected her head was prematurely fusing.  Of course I was a little worried about that.  She had to go in through the pediatric sedation center.  She's just a baby and can't be still so she had to be sedated.  Always scary to me.  I always worry about my precious kiddos getting too much sedation medication.  It turns out she's fine.
     Rachel had her bronchoscopy and picc line taken out about a week or so before Christmas.  A good day because Rachel got her picc out and the doctor said her lungs look good.  Or course as I mentioned,  I worry because she had to be sedated.  I've got to tell you......Rachel is a hoot when she's coming out of sedation.  She's funny to begin with but...oh she funny waking up.
     Rachel's uncle visited for the first time.  We've been here 6 years and he finally made it.  We all had fun showing him around the island.
     Rachel went surfing again with Mauli Ola.  She's always enjoyed everyone she been surfing with but she does have her fav's.  She got to surf with Kala. He's one of her first surfing experiences.  He's always been so nice to Rachel and she just loves him.
     Breakfast with Santa was fun.  I wasn't thrilled that it had to be breakfast but I got over it.  Friends of ours were there too.  It was at Dave and Busters, so after meeting with Santa and breakfast we all had fun playing games and hanging out with friends.
    In the middle of everything happening, I had to finish up on some continuing education for my Occupational Therapy license.  Thank God for online classes!
     Aunt Chris and GG & Nana and Gramps came to visit.  They are always so fun to be around. Like with uncle we had fun taking them places and hanging out around the house.
     So now, all the busy and chaos has settled.  Rach is back in school full force. We are back to snorkeling and biking.....Amelia goes with us (in her baby seat on my bike, cute helmet, sunglasses and pacifier).  Parks and Rec classes have started again.  This time Tahitian and volleyball. Rachel is still going to AWANA & will be finishing her book early.
    I'm hoping things will be quiet for a while.
   Anyway, that's what's been going on around here.  Now maybe I can keep up with this blog and my food blog.  I've got lots of catching up to do with housework and with my friends.

Rach and Amelia with Kala


Thursday, October 17, 2013

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.

Wednesday, August 7, 2013

About Baby 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

Friday, June 21, 2013

Outrun CF Summer 2013

The Outrun CF virtual run was supposed to be June 1.  Rachel and I got our shirts on time but for some reason Russ' came late.  Go figure.  We did our Outrun CF on Saturday June 8.  I had forgot to mention it in my "Catch Up" post.  It was a low key run this time.  I didn't plan any super exciting route like I had could read about those here.  We did a round trip of 4 miles.  Russ and I on foot with Amelia in the jogger stroller and Rachel with her scooter.  Even though it was through our neighborhood, Rachel was more than thrilled with the turn around spot!

Keep Calm and Outrun CF

Rach "scootering"
close to a mile in

the turn around spot......
frozen yogurt store

so ono!

Thursday, June 20, 2013

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!