Thursday, October 17, 2013
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
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.
Friday, June 21, 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 before....you 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|
close to a mile in
|the turn around spot......|
frozen yogurt store
Thursday, June 20, 2013
|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!
Thursday, June 13, 2013
Things have been crazy around here since Amelia was born. There have been several doctor's appointments between Amelia, Rachel, and me. There was Russ' change of command, Tripler's CF Education Day (which was wonderful), Great Strides, Mauli Ola Surf Day, and then my mom visited for a week. It's looking like our summer should be quiet. I'm looking forward to beach time.....and I know Rachel is too. So, because baby could wake up at any minute, I'm going to show you what we've been up to.
|Rach posing with the Hershey kiss|
roses from CF Ed. Day
|Rach surfing with Duke|
|my sweet babies out on the couch|
|Mom's here....finally she meets Amelia|
|Rachel took Granny snorkeling|
|I managed to have a little fun throwing the|
frisbee with Rach
|we saw a "real live" mermaid at the|
|Rachel thoroughly enjoying the cake at|
AWANA Mystery Night
(kids get to go to Mystery Night if they finish their book.....
Rach finished her book & did the review of 2 books.....
she earned 3 awards this year!
|just us girls|
|she just couldn't resist!|
|Rach feeding little sis while Granny plays with a dolphin|
Sea Life Park
|Mom with dolphin named Maui|
|Amelia wasting no time getting into beach mode|
|Mom and Rach|
|Little Miss Sunshine Rach!|
Tuesday, May 21, 2013
Baby Amelia has arrived. She was born Saturday, April 27th (she's now 3 weeks old). She's a real sweetie, just like her big sis. Rachel adores Amelia and keeps saying, "I can't believe I have a baby sister!" Rachel is constantly giving Amelia kisses on her head and toes. I thought I'd share a few pictures in this welcome post.
|Shaka and smiling...|
obviously after the epidural!
|Rach holding Amelia.|
Amelia is wearing the dress Rachel came home in.
|Flowers Rachel gave me|
while in the hospital.
|Baby Amelia at home.|
9 days old.
|Rach and Amelia|
chillin' in their pjs.
|The proud big sis.|
10 days old
Sunday, April 7, 2013
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.
|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|
|Doing nails with child life.|
|Shhh.....nobody knows about this...|
Rachel figured out how to turn her bed
into a slide.
|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
|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.
but it sure wasn't home.
Saturday, April 6, 2013
It's been....forever....since my last post. Things have been crazy and I've been exhausted. Let's go back to February....Rachel turned 7! Yay! Happy Birthday Rachel! All she wanted for her birthday was to have breakfast in bed, go to Germaine's Luau and have her friends over to the house to play & eat cake/ice cream. So, that's what we did. A week before her birthday she had a clinic appointment and the the CF care team surprised her with happy birthday decorated room and a chocolate birthday cake.
|Thinking about her wish.|
This is the cake from clinic.
|Breakfast in bed.|
|Balloons and flowers from us.|
|Miss Rach doing the hula at Germaine's Luau.|
|Happy Birthday Sweet Girl!|