• My Family

  • Rachel’s Daily Cystic Fibrosis Medications

    Albuterol (2-4 x)
    Hypertonic (2x)
    Pulmozyme (1x)
    Glutathione Inhaled (2x)
    Advair (2x)
    Prevacid (2X)
    Ursodial (2x)
    Glutathione oral (3x)
    L-Arginine (1x)
    Acidophilus (3x)
    Vitamin (2x)
    Periactin (2x)
    vitamin d3 (1x)
    Cal/Magnesium blend (1x)
    ADEK (1x M,W,F)
    Creon 12 (6 with meals and snacks)
    Vest (2-3x) 30 minutes
    Percussion (30 minutes)
    alpha lipoid acid (1x)
    singulair (1x)
    fish oil (1x)
    nasonex (1x)
    zyrtec (1x)
    azithromyicin (M, W, F)

  • Recent Posts

  • Monthly Archives

Mahalo~Make a Wish Trip

Well we are back from one of the most amazing trips of our lives!  I don’t know where to even start writing this blog post, so I guess I will start with some great pictures.

Blessed by the Lord for the Joy of family!!

Blessed by the Lord for the Joy of family!!

Precious picture of my sweet girl living life to the fullest!

Precious picture of my sweet girl living life to the fullest!

Hawaii…here we come! Shades and all

Hawaii…here we come! Shades and all, (a few days before our trip).  Our wish granters came bearing gifts for all the kids.  Precious!

IMG_3690

Our sweet wish granters! They were amazing and so very kind to everyone!

IMG_3692

An ice-cream cake. Yeah, we had such a fun day. Pizza, ice-cream cake, our Hawaii itinerary, and presents for everyone. Blessing beyond our imaginations.

IMG_0007

Our early 3 am faces. No one looks sleepy here. =) EXCITED!!

IMG_0013

Brr! Only 2 degrees, but had to stop to get a picture of the limo. So much fun, and a beautiful memory. Kids were just wishing that we lived farther from the airport (10 min was not long enough for them in the cool limo =) hehe.).

IMG_3701

In line at the airport and ready to go!

IMG_0014 2

TSA. Spent about 20+ min. having them check through all of Rachel’s equipment and medications. They were very thorough!! =) Then we got to put it all back. We managed to get it all in 3 bags though! Yeah.

IMG_3835

Amazing treatment by the most awesome flight crew. God must have handpicked these people for our family. They were so very kind to all of us, and made us feel like we were kings and queens. Shiloh, Nathan and Caleb all received ice-cream sundays! (Rachel couldn’t eat it because it had eggs and she has a life threatening allergy to eggs. Over the ocean is about the last place we wanted to have an allergic reaction.) The rest of the kids were ecstatic.

IMG_0016 1

People that will forever be in our hearts! Everyone on the crew was awesome, but these three in particular were AMAZING!! The care and love that they showed us in the short 9 hours that our lives intersected, will be a memory that we will NOT ever forget!! Precious people!

Just off the plane.  Our lei greeting!  Tired, but happy people!

Just off the plane. Our lei greeting! Tired, but happy people!

IMG_0029

Another lei greeting at the hotel!

IMG_3816

A quick “look” or DIP in the ocean. The kids were SOOO excited to finally be able to see the ocean. Unfortunately we got in kinda late and the sun went down shortly, so there was not much time to play.

IMG_0053

Despite being soaked! Fun pictures of sweet kids!

Parasailing!  Experience of a lifetime.

Parasailing! Experience of a lifetime.

Treatments in the airport. Rachel handled it like a trooper.  There was only one place with a plug in in the HUGE waiting room.  She had to sit in front of everyone, and didn't bat an eye at it.  My heart went out to her…but it's part of living well for her.

Treatments in the airport. Rachel handled it like a trooper. There was only one place with a plug in in the HUGE waiting room. She had to sit in front of everyone, and didn’t bat an eye at it. My heart went out to her…but it’s part of living well for her.

So fun to look at all of these great pictures.  It really was an amazing trip.  It was however far more emotional than I could have imagined.  I will save those ponderings for another post.

One of the most emotional times was watching my girl get to surf.  She literally has asked and prayed to get to surf in Hawaii for 3+ years.  (For awhile, she asked and prayed almost every day, until she got a bit older and realized the reality of a trip like this.)  So, to see her out there…definitely brought tears to my eyes.  Knowing the struggles that she has endured and the greater mountains that she has ahead of her…this was a sacred, blessed day for me.  Spent some time ON “my” surfboard soaking it in and praising the Lord for His great mercy and strength to take each day (and each wave) as it comes.

She is up!  (I am surprised that you could not hear me screaming from your home.)  Proud, proud mama!!

She is up! (I am surprised that you could not hear me screaming from your home.) Proud, proud mama!!

Loving life!  Living her dream!  She has such a spirit of determination and vigor for life.  WHAT A BLESSINGS!

Loving life! Living her dream! She has such a spirit of determination and vigor for life. WHAT A BLESSINGS!

Paddling is hard work, but she did it with joy.   That smile…says a lot about how she sees her world…there may be trials and difficulties, but there is joy in the process.

Paddling is hard work, but she did it with joy. That smile…says a lot about how she sees her world…there may be trials and difficulties, but there is joy in the process.

My girl surfing!!  Tears filled mamas eyes at her wish being realized!

My girl surfing!! Tears filled mamas eyes at her wish being realized! Praise God for His Goodness!

Mahalo~

A word Rachel and I studied a few years ago when she wanted an Hawaiian birthday party.  This word is so much a part of her fight and struggle.

There are several meanings for it.
~Thank you is the most common.  It is having a sense of gratitude.  We can not truly express the magnitude of gratitude that fills our hearts!

*Grateful for Make a Wish allowing this trip.
*Gratitude for our friends and family that have walked this journey with us and continue to pray and lift us up daily.  We can FEEL those prayers.  Rachel was sick the week before we left and the couple of days before we came home started getting sick again. She has been sick since we got home.  Thank you, thank you for the prayers.  We are so blessed that we even got to go on such an amazing trip.

But here is my favorite meaning of the word… 
“(May you be) in (Divine) Breath” put another way means:

~A blessing of Breath from the Lord!

Amen!

Mahalo~

One Response

  1. Wow. What a blessing for your family. Praying for you as you continue on this journey with Rachel but so glad for these memories you now have and that she made it to Hawaii!

Leave a reply to Liz Brinkley Cancel reply