Gearing Up For Great Strides 2012

Great Strides Honolulu 2011
next to Rachel's storyboard

It's December; I'm already beginning to prepare and fund raise for the Great Strides Walk 2012.  Our walk is May 26th but starting early really helps.  This year is a little more exciting for me.  The big reason is because I recently found out that there are two drugs in the CFF's drug pipeline that are very promising and Rachel could benefit from them once available.  These drugs are targeting specific mutations and they are designed to correct the function of the defective protein (Cystic Fibrosis Foundation).

 THIS IS HUGE! 

Rachel is doing well and I am grateful.  However, CF is a nasty beast and in reality things can change so fast....even when you're doing everything right.  Rachel, like most with CF, looks fine on the outside but CF can be very deceiving.  Here's what you don't see - scarred lungs, abnormal pancreas, gut issues, liver disease (due to CF), etc. 

In this 5 years of CF trying to take over, I've met some inspiring people and found some great resources that are helping us take down the beast.  Two come to mind - #1  When we were stationed at Ft. Leavenworth, Rachel had clinic at Children's Mercy.  I attended their CF Ed. Day and through guest speaker Dr. Foster Cline, I was introduced to the book "Parenting Children with Health Issues" (there is now a blog, too).  I rave about this book any chance I get.  This has been the best tool for dealing with touchy situations or behavioral issues.  Applying the techniques from the book, nips potential disaster right it the bud.  #2  Through random CF Google searches, I found the blog Run Sick Boy Run.  The blogger, Ronnie, is an adult with CF.  He is one of the most positive people (besides yours truly....hehe) that I've met or know.  I was sucked in drawn to his blog because of his positive attitude and outlook on life......it's very contagious.  I find what he has to say very helpful to me.  I love reading about CF from his perspective regarding pretty much anything, really.  I think it helps keep me in check, too.

I don't really remember where I was going with all that, so.... anyway...............It's always a battle with CF.  Yes, Rachel is doing well....but it's well - with CF...a deadly disease.  Yes, we try to have a "normal" life, but hey, with CF sticking around that takes great effort.   Sometimes, it's hard to stay positive, but we do or maybe I should say that we try.

Promising things are happening with CF right now.  Unfortunately, many say good-bye each day. 

Raising money to find a cure is high priority for me.  I hope you'll support Rachel,our team Rachel's Rangers and the CF Foundation.  I like to add that roughly 90 cents every dollar donated to the CF Foundation goes straight to research/education.  I think that's amazing.  If you can and/or plan on donating, you can click on Rachel's Rangers or the Great Strides tab on the right side of this blog. If for some reason neither work, you can go to http://www.cff.org/great_strides/ and search my name Sherry Meyer team Rachel's Rangers.

Thanks a bunch! 

December 2011

Season of Giving

Vanilla Peppermint Cupcakes

Rachel and I went to Tripler today.  This was a fun trip.  Fun because we/she didn't have to go for an appointment.  You know how we like to take yummy snacks to them when Rachel goes for clinic?...Well, we made the Tripler CF care team goodies for Christmas.  We made a special trip just to deliver Christmas goodies and card to let them know how much we appreciate them.

Thank you everyone for helping to keep my sweetheart healthy!

Taking a break from baking for a photo!
....in matching aprons that GG (Great Grandma) made for us!

Vanilla Peppermint Cupcakes

Miss Rachel busy making chocolate spoons

Mocha (hot chocolate with coffee flavor)

In case you were interested in any of these recipes.  They will be posted to my food blog within the next few days. 



Mauli Ola Surf Day

Saturday was our second Mauli Ola surf experience day for CF this year.  It also was the last day for Mauli Ola's surf days for this year.  We are so lucky to have them come twice a year.  If you've never heard of Mauli Ola Foundation please check them out.  There is a link here on my blog and in this post, just click on Mauli Ola. 

Today's post about the event is mostly in pictures, but there are just a few things you must know.

First, Gavin Beschen was there....one of Rachel's favorites.

Second, Kala Alexander was there.....the other of Rachel's favorites.

Third, she wanted to surf with both of them! 

Unfortunately, this day she didn't get to surf with Kala, but she did have a blast "slidin' on waves" with Gavin.  They surfed alongside sea turtles "honu" and under a rainbow.  This surf day Rachel began to get the hang of standing with no help.  She was so proud of herself. 

So, without further ado, I'll let the pictures tell the story!

Getting a lesson from Gavin.

Heading out to "slide on some waves".

Heading out.

On their first wave....a success!

Another of the first wave.

Paddling back out for more.  Gavin surfed with her probably
probably 45 minutes straight.  She was lovin' it!

Rachel had to be in heaven.  Surfing - under a rainbow -
with Gavin - with honu.  

A perfect Hawaiian day.
Rach and Gavin are out there. 
 The tiny grey speck near the right side of the rainbow.

Catching another one.

And another.

She's trying so hard.

High fives to another Mauli Ola surfer.

Up by herself!

Balancing all by herself.

No Gavin hands!  She's getting it.

Saved!

They stopped a moment to watch another surfer.

There's no telling what they're talking about. 
It is Rachel after all.



Gavin Beshen Mauli Ola cap. 
One of the gifts to Rachel from Mauli Ola.

Of course; she had to make sand angels.

My sweet Rach.



You didn't think we'd leave without seeing
Uncle Kala!



Mauli Ola Foundation
Group pic of the foundation staff, volunteers, and participants.

Thank you,

once again,

Mauli Ola.

You are awesome!

You have become our ohana.....

and we love you guys!

Surfing

Rachel and Kala Alexander

Sunday, December 3 was a surfing event for the patients with CF that go to Tripler Army Medical Center.  One of the doctor's son was doing a community service project for school and decided to to surfing for CF. 

 It was a perfect day at the beach.  I always enjoy watching Rachel surf. 

 I met a couple new people. 

Lunch was provided and it was yummy. 

It was just a really nice day out.



I'll Do It For The Dippin' Dots!

Honolulu Zoo

The day after the Zumba fundraiser Rachel was going to go to a CF surfing event. As it turned out,  it had to postponed due to bad surfing/weather conditions.  She was bummed.  I told her I would do something special and fun for her.  My fun thing was to take her to the zoo.  The windy, bad surfing weather made it a great day for the zoo.  It wasn't blazin' hot like it usually is there. 

We get there and go to the bird section first because the last few times we went there was a peach faced lovebird that would come right up to the cage after we "tweeted" to it.  We were disappointed to discover that it has been moved and no more lovebird to "tweet" with.  Boo. 

After the bird section, Rachel was ready to go straight to the reptile house to see the one and only snake on the island.  Of course it was coiled up in the corner.  She could see just a little of it's pattern.  She really likes snakes right now.  She thinks they're cute.  Whatever, I don't get it. 

After our visit with the snake, we made it through the rest of the zoo. All the animals were doing they're job - performing and posing for the camera great!

giant tortoise

alligator...ick

pretty peacock.  Rachel loves these too

zebra...this one is for me...kinda like a striped horse. lol

at the keiki zoo

Now, after seeing all the animals including the petting zoo and going back to check on the snake, we were ready for a snack.  Rachel saw the Dippin' Dots stand and wanted that for her snack.  I asked her if she had any water left. Of course, no, she drank it all.  I was low on cash and honestly didn't want to pay over $2 for a bottled water just for her to take one enzyme....so, I say, "Do you think you can swallow your pill with spit?"  I wish you could have seen the look on her face.  She gave me a glazed over look.  I said smiling, "I'm serious. Do you think you can?" She goes, "I think so."  I say, "Alright.  Start saving up your spit!" She giggles and says, "I'll make spit.  I know how.  You go like this."  I get a nice demonstration from her.  I say, "Rachel, you are so awesome."  I get her the enzyme and down it goes;  no problem with spit.  I get us our Dippin' Dots and bon appetit.

This was a day to remember. 

Rachel was at the Honolulu Zoo the first time she swallowed a pill with spit!

I just love her so much.

sweet, easy, fun lovin' Rach

 

Zumba for CF

Wow!  A lot has happened since the last post.  We've been so busy and our computer died.  Busy - being serious about exercise, Thanksgiving, snow.....yep you heard me....snow (a truck load was dumped at our church), decorating for Christmas, and Zumba for CF with Lindsey Taylor. 

Ok, so the Zumba for CF thing came about after our Great Strides Walk 2011.  I met Lindsey's brother at a CF education day at Tripler.  He said he wanted to help with Great Strides.  So, I got in touch with him and he helped out with Great Strides.  A few weeks or so after the walk, he asked me if I would be interested in a Zumba fundraiser for CF.  Of course, you know me, I love an idea that will generate funds to support finding a cure for CF.  I was however a little worn out from Great Strides and the thought of helping to put something else together was not really all that appealing.  So, I said, "If we can work together.  I don't really want to do it by myself."  Plus, you know, I'm just now beginning to get the hang of what I'm doing for Great Strides.  I had no clue how to put together a Zumba event.  He agreed and said we'd work together.  Perfect!

To make a long story short, Lindsey ended up contacting some local Zumba instructors and they planned the whole thing and no one needed a thing from me.  The only thing I did was spread the word.  I felt bad but honestly was relieved since I was clueless. 

The event was perfect!

It was at the Waikiki Shell on November 26th.

I can't say Thank You enough to everyone involved in making this successful event happen.

Lindsey Taylor

Rachel and her friends

Rachel and her friends

Lindsey, Rachel, and I after Zumba for CF

"Thank You" to everyone who made this event happen.

You are awesome!

Lindsey

Theresa

Michael

Justin



November Clinic Visit



Chocolate Pumpkin Cupcakes with Cinnamon Buttercream Icing
The cupcakes we took to CF clinic team.



Rachel had clinic last Wednesday.  The good thing; the important thing is that she's doing great.  Her PFT's were down a little - putting them at 108% .  Come on, can't really complain about that.  While she's been active, I got to thinking and she hasn't been as active as before.  So, I'm going to get her (and me) moving more.  Moving like we were before. 

I do have to say that I was very disappointed and put out with some of the Tripler staff that day.  When we got there, we were told (with attitude) to wait in the hall  when there is a policy in place for patients with CF to be taken to a room  right away.  We wait in the hall for 15 minutes (10 past our appointment time) and what do you know, another CF patient comes in for their appointment.  So, there are now two CF patients told to wait in the hall together?!  

When Rachel is finally chosen (yea, I'm being a smart ass), we followed the nurse (or just a girl in scrubs, yea smart ass again).  I thought she was taking us to a room.  The fact of the matter is, she had no clue what she was going to do with us.  We walk down the hall behind her and all the while she saying, "Let's go to room 11.  No, let's go to room 17. No, room 11, room 17."  Growing red faced fast, I say (you guessed it - smart ass tone) "Instead of roaming the halls, why don't we ask the doctor where he wants her?"  I know.... genius!!   We finally get to one of our usual rooms and I thank God.  At least we're not in the hall anymore....right? Shortly after getting into the room, scrub girl takes Rachel's temp, blood pressure and O2 levels. Then we get to wait 15 more minutes before anything gets done.  Yay!  In that 15 minutes, another girl in scrubs comes by and asked if we were ready for the flu shot.  Oh, geez!  Can anybody check a darn chart?  I see clearly why limbs are marked with a Sharpie permanent marker before an amputation is performed!  I drop my head and say, "Nooooo, we are here for CF clinic."  So, scrub girl leaves and do you believe she came back to tell me she got it figured out?  Serious!  Well, if you are someone who really knows me, you know what was going through my head.  Finally, after the 15 minutes, now 30 minutes past appointment time, scrub girl comes to take Rachel to get weight and height.  As we are heading to get height and weight, child life comes to visit with Rachel.  She looks puzzled as to why we are just now going to get that done.  No worries....I filled her in on all the details when we got back to the room.  At this point, things finally began to run smoothly.  The rest of the appointment went as usual,  which is great!  I get so frustrated because there is a Tripler policy in place/protocol for people/patients  with CF.  Why is it still an issue?  It was going good for so long in the pediatric dept.  As for the rest of the hospital, well that has always been an issue. 

After we got home, I did what I usually do.  And that, my friend, was fill out a nice long complaint accompanied with suggestions on how to fix it!  You know, what good is a complaint without any idea on how to fix it...right?  In the very near future, Rachel has a routine abdominal ultrasound.  I'm going to pray the radiology dept. has it together because, I tell you what....I'm on the verge of going all redneck on somebody. ha

What I'm Thankful For

What I'm thankful for; 

It's pretty simple....

my family, friends, and good health.

My family.

I'm thankful for them for always being there and putting up with me.  hehe They are so loving, thoughtful, and fun to be around.  I am truly blessed to have them.  Here's to my awesome family - everybody - immediate and extended!  Love y'all bunches!

My friends.

I have the best friends.  You may think you do, but you don't.  hehe I'm so thankful that I have friends that are there for me at the drop of a hat.  Many times when Russ was deployed, my friends took me and Rachel into their homes for family gatherings, spent days together at the beach complete with lunch, sleepovers, invited to supper, made special phone calls just to check on me and Rachel,.....I could go on and on.  My friends are the best and I am deeply thankful  for them.  Here's to my fabulous friends!  Love y'all bunches.

Good health.

I'm thankful for good health.  My health, my family's, and my friend's.  I'm especially thankful for how healthy Rachel has been; believe me, I thank God everyday for this one.  CF is one nasty beast and Rachel is handling it beautifully.  She's had only one minor cold for just three days in two years.  Nothing else.  No infections, no issues, no nothing. 

 It's just amazing.

Here's to good health!

When you get right down to it, that's what I'm most thankful for!

What are you thankful for? 



Auntie Outruns CF In AZ

Aunt Chris at Pinnacle Peak.

A couple days ago I got an email with pics from Aunt Chris telling me about how she hiked for "Outrun CF".  She hiked 3.5 miles at Pinnacle Peak that had lots of ups and downs. She had mentioned to me a couple months ago that she wanted to run, walk, or hike on the same day as us for Outrun CF.  I was so excited to find out she hiked for Rachel and CF awareness.  It makes me teary thinking about it because Outrun CF day has become a very special day for us. 

It's amazing how something so simple can mean so much. 

Thank you Aunt Chris, we love you.

Maybe one of these years we can "Outrun CF" all together.



Looks like she's ready to kick CF butt!



She's awesome!



That little bitty pink dot is Aunt Chris.
What a beautiful place to hike.