November CF Clinic and Family Update

Miss Rach mixing the cookie dough.

So, Rachel had clinic the day before Thanksgiving.  Of course we had to make fall/Thanksgiving 'ish goodies.  Clinic went well with only one change; she's going up one enzyme.  We met her new pulmonologist.  He came to the door and said, "Hi, I'm going to come see you."  Without missing a beat, Rachel says, "Oh hi,...who are you?"   That girl just cracks me up - never a dull moment. 

Rach posing with the "turkey" cookies.
She so proud of how they turned out.

Turkey cookies.

Baby pecan and pumpkin pies.

The goodies we took to clinic were homemade chex mix, turkey cookies, and baby pecan & pumpkin pies.  Rachel had some news she wanted to share with clinic.  We used the baby pies to help tell the news.  Rachel announced to each member of CF clinic that she's going to have a baby sister!  Rachel is so excited for her sister to get here.  May 1st is the due date and all I hear out of Rachel is how that is going to take forever!

Baby sister.

My Little Tahitian Dancer

Before the performance.

Rachel's been busy taking a few classes through parks & recreation.  Sadly, they are coming to an end.  Last night she had her Tahitian dance performance and just let me say "It was so cute".  I suppose now we'll have to hop back on our bikes and find some hikes to do until the next round of classes start up!

Rachel dancing her solo.

 

One of the two group dances.

 

The group Rachel learned Tahitian with.
All the girls were good.

After the performance.

The Colorful Way to Kick CF Butt

Nice and clean in our white shirts.

Saturday, November 4th, was the Oahu Color Run 5K.  I explained to Rachel that we wear our white shirts, go through color stations to get sprayed with color, and finish the run all colorful.  She was pretty excited.  Rachel did a great job run/walking and we had a blast experiencing something so fun together. 

Coming up on orange...first color.

You bet we had bandanna masks.....
gotta keep the dust out of those lungs.

 

 



Rach getting into the orange.

Into the blue.

 

 

Rach pushing through.
Look at how colorful her shirt is becoming.

 

Time to walk a while.

Yellow is next and somehow I failed to get
pics of the pink station.  Oh well.

 

I think she was looking at somebody getting
dumped with a whole lot of yellow.

 

 

After the run.
We'll be doing it again next year.

 

 

Just look at that face.

Flu Shot Twins

Flu Shot Twins

Today was the day for.....dun dun dun.....the flu shot.  I told Rach last night about the flu shots.  Of course she was less than thrilled.  I told her that after we got all poked we'd go play games at Fun Factory.  I like to give her something to look forward to, just like after CF clinic.  We always do something fun or go to Rachel's pick of restaurant for supper (as long as she's not picking Ruth's Chris or some place like that!)  Anyway, back to flu shot.  So, we drive to Tripler, park in freakin' Tennessee, and take a 10 minute walk to the clinic.  Everything goes smoothly.  Rach picks to have the flu shot in her left arm.  I told her, "Since you picked your left arm, I'm going to pick my left arm just like you!"  I held Rachel's hand to help her be brave and she held my hand to help me brave.  After we noticed we looked like "flu shot twins".  Cheesy, I know....but hey whatever works, right?  Can you believe that neither one of us got a sticker!?  That's just wrong.  hehe  Oh well, we left and played games at Fun Factory and never even missed the stickers. 

Keepin' Busy

Rach modeling her red/white Tahitian outfit.

When September rolled around, we became very busy.  Rachel started three classes through the parks and rec.  She's in hip hop dance class once a week, swim lesson twice a week and Tahitian dance class once a week.  Also,  AWANA has started back and that's once a week.  In addition to these new classes, Rachel is still in gymnastics twice a week.  Luckily, most of the classes are close to home making it convenient for me.  These classes keep her moving and offer her a chance to meet some new friends.  Not that Rachel is lacking in the friend department....she's been in some kind of kid group since she was 2 and has play dates often with her friends.  Of everything Rachel is doing she likes AWANA and Tahitian the most.  Anyway,  I just wanted to share what we've/Rachel's been up to lately. 

Hip hop class.

Ready for swim lesson.

First day in Tahitian class.
Before we bought the "uniform".

First day in Tahitian.

My little Tahitian dancer.

Oh, Rachel

Yesterday, during one of Rachel's breaks, she wanted ice cream.   I told her to get some water so she could take her enzymes.  She went one step further and got the enzymes out for me.  She tried to open them and go ahead and take them. She tried and tried but just couldn't get them open.  The she said, "I hope if I have a daughter, she doesn't have CF because I don't think I will be able to get her enzymes open."  I just love her! 

Impressive

Always Silly, Always Amazing
4 pills at once - I can't do that
Believe me, I've tried

God is so good to my girl.  She is so blessed.... Blessed with the best,bubbly, positive personality.... Blessed with a wonderful life....Blessed with a heart full of love and kindness.... and Blessed with the will to daily kick CF hiney!   

Coolest Homeschool Exercise!

 

This is what I like......
Not having to share the beach with anybody
except the locals!

As of today, Rachel has completed 25 days of school.  I make sure she exercises every day at least 45 minutes, but I shoot for an hour.  Exercise is one of her subjects.  The way I see it, it is just as important to her as math. 

Now, since you know you I'm a, uhum, a really cool mom (I'll probably maintain that status until she's a teenager), Rachel has been getting to do a lot of snorkeling.  It's about a 20 minute drive for us to get there but it's worth every minute.  We like to go to this place where the locals hang out.....and when I say locals, I mean the sea turtles, honu. 

We go snorkeling 2 or more days a week.  I prefer mornings before school but if that doesn't work out we go after school and just get to stay longer!  Rachel has made up a game of "chasing fish".

Ok, so back to the honu.  I love honu.  The are so darn cute, peaceful looking and I think they look quite graceful in the water.  We snorkel here knowing the honu are around all the time but still, I get startled every time one comes by....especially from behind.  The honu are not usually aggressive but it is a wild animal and you never know. 

Rachel gets startled also....especially when she's chasing fish and is only looking at the fish she's chasing.  I watched her swim circles around a honu and had no idea it was there.  When she did see it, she screamed....kinda different to hear your child scream underwater.  The second time a honu came past us without us knowing, it snuck up on us from behind (you know, what I really don't like), went past me and right under Rachel as she was chasing fish.  Again, you could hear her scream. 

The honu are endangered and you are supposed to keep a distance from them.  Having said that, the pics below of honu were taken as they came by/past us while snorkeling..... so Rachel can chase fish! You can't always see them coming....remember how I get all freaked out from the behind approach.  Also, the water is a little cloudy sometimes and you can't see them coming until they're several feet from you.  So, unless the honu is coming right toward us I just float, get my pics and let it pass.  Rachel and I do not follow them,  I want the honu to know that I one of those respectful humans!  I get so annoyed at people that rush up and huddle around the honu; getting way too close. 

Anyway, enough about that.  Rachel has been getting great exercise and having a blast doing it.  I 've been having a blast, too.  I'm not really sure who's been enjoying it more. 

One last thing before the pics.  In the future, regarding posts, you'll get to see how we've been attempting roller blading!  It's a work in progress, so don't hold your breath for that post!

Rach says, "Aloha!"

Looking for her first fishy to chase.

We like these fish.
We saw a several other colorful ones but they were deeper
than I wanted to take Rachel.

It's so beautiful.

I believe this was the one that came right toward us. 
Like it wanted to play chicken.
I don't play chicken, so I grabbed Rachel
and we scrammed!



Head shot, too bad I was going for a body shot!

August Clinic Visit

Miss Rach

Rachel had clinic yesterday.  She is a little under the weather with a cold but she didn't let that get in the way of her usual self....you know the "rascal" Rachel.  As usual, she had the staff laughing.  She told on me; she told them that I call Miralax mixed in juice - poopy juice!  There's no telling what else she said that I didn't hear. 

Her check-up was good.  I didn't have any worries except what the cold would do to her PFT's.  So, the results of clinic are - she grew, gained 1/2 pound, and blew over 100 on her PFT.

 She's so awesome! 

She must get that from me!  hehe

We left the CF care team with a chocolate chip cheesecake and headed home.

Trying to sneak a taste.

Kickin' CF Butt - Big Island Style

I'm watching you CF!

So, we had a family vacation to the big island of Hawaii.  It was nice to go on vacation and actually have Russ with us.  We were there for about 4 days and boy we didn't miss a beat.  The minute we landed on Tuesday, we got in our rental, headed to Kilauea Military Camp, got into our cabin, and we were out the door to explore.  That evening we walked to the steam vents, and then hiked crater rim trail to Jagger Museum to watch the glow of Kilauea caldera at night.  Wednesday we explored the volcano park.   We stopped at the Thurston Lava Tube, Devastation Trail, pit craters, lava fields along the road, petroglyphs trail, scenic outlooks,  and the Holei Sea Arch.  After that we left and ate supper in Hilo.  Thursday we went to Kona to check it out and we had a parasailing excursion planned.  The three of us parasailed together.....it was so much fun experiencing it together.  After parasailing we ate lunch, changed into fall/winter clothes and headed for the Mauna Kea visitor center.  While we were there, we hiked up a on top of a very high hill, watched the sun set, took some beautiful pictures, drank hot chocolate, and stargazed.  Friday we hiked Kilauea Iki Crater (it was once a lava lake), drove south, ate lunch at the Southernmost restaurant (Hana Hou) in the USA, went to the Southernmost point in the USA (Ka Lae), and hit a black sand beach with some sea turtles. That night after we got back to the cabin, Russ made a fire and we had some more hot chocolate.  Saturday all we did was let Rach play at the playground across from our cabin and then we had to head to the airport.  Boo Hoo.  It was an amazing trip.  Rachel seriously kicked CF butt.  She/we hiked about 12 miles and she only missed one chest therapy treatment. 

Now, it's time to share the pics.   I must warn you.....there are a ton!

lunch at Ken's House of Pancakes

to the steam vents

Rachel in the steam

steam vents

Rachel with Halema'uma'u Crater smoking

Nene crossing.....those are unusual looking birds!

Halema'uma'a Crater

hiking crater rim to go view
the night glow of Halema'uma'a Crater

Russ and Rachel hiking

Halema'uma'a Crater glowing

yea....we were watching for cracks

crystallized sulfur at Sulfur Banks

lava field...one of many

lava field with beautiful ocean view




at the Holei Sea Arch

heading out with the top down

parasailing in Kona

what a thrill

while we were up, we saw a pod of dolphins
and a manta ray

yea, they dipped us

back up dripping

lunch after parasailing
Russ and Rach playing a little rock, paper, scissors

and I'm drinking!

of course Rach found fake people
to take a pic with!

beautiful stained glass inside
 the first church of the islands
MoKuaiKaua (est. 1820)
we went in and said some prayers
and thanked God for all our blessings

we had to bundle up in winter wear;
up near Mauna Kea visitor center
watching the sunset atop a very big hill
quite a hike up...

Miss Rachel
trying to stay warm

view from the top of our sunset hike
up the hill

this was a hike across what
once was a lava lake

on the trail - hopping across a muddy spot

starting the journey across the lava lake

Russ and Rach....got tired of waiting for me
....guess I was taking too many pics!

very interesting and a little unsettling
knowing we were standing on what
used to be a lake of hot lava

cracks everywhere

don't step on a crack or
 you'll fall in!

across the lava lake

Hana Hou
Southernmost restaurant in the USA

we are standing in the Southernmost point in the USA
Ka Lae, HI

there's the proof

on the way back to KMC
we stop at Punalu'u Black Sand Beach
and had the pleasure to share the beach with these guys

the only beach time she had on our big island trip

yea....I know, I'm blessed to have him

I'm blessed to have her, too!