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Make A Wish

We have some excited news!!!

Rachel was granted her Make A Wish trip.  We are so excited!!  We have known for a while, but I am just getting around to blogging about it.

Saw this stand at the mall the other day.  We had to stop and say hi, and thank you for the work that these people do.  Amazing people, amazing organization.

Saw this stand at the mall the other day. We had to stop and say hi, and thank you for the work that these people do. Amazing people, amazing organization.

A little over four years ago we were contacted about doing her wish.  This was the week after my mother passed away.  Consequently, it was not a good time as we had many tasks to do in completing the sale of her house and dealing with her belongings.   We were thrilled to know that Rachel would have a chance at doing something extra special in light of all of the “not so fun stuff” that she must endure everyday.   However, kinda put the idea of her wish somewhat in the back of our minds.  Although, Rachel would talk about it often, but not really in a concrete fashion.

The week before our sweet Megan was due, we were contacted again.  We were told that Rachel would either need to proceed in making her wish or be taken off the list (and may have an issue with getting put back on the list).  We kinda felt like that was a push that we needed to take.  So we began filling out paperwork and began thinking and discussing what Rachel’s one wish would be.  THAT DIDN’T TAKE LONG!!!  For several years (every since we watched Soul Surfer) Rachel has asked and begged for every birthday and Christmas present to be able to go to Hawaii to surf.  Somewhere in the past few years I also told her about an organization that helps people with CF learn to surf in California because it is so good for their lungs.  Consequently, surfing has been a passion (as a side note, those in the CF world know this already, but one of the added tools in our arsenal for CF care and medication was developed because of surfers in Australia who found that they were able to clear mucus after a good day of surfing.  The salt water sprays thinned their secretions, hence helping their CF lungs.)

SO…..when asked Rachel’s big wish was to take surfing lessons in Hawaii!

Celebrate Love

Celebrate Love

This whole process has been amazing, albeit challenging in so many ways.   Among my excitement in getting the paper work and dreaming with Rachel, I have to admit that filling out the paperwork (alone) came with many tears.  The reality is tough.  My baby girl HAS A DEADLY DISEASE that allows her to be put on such a list!  She is not on this list because she is your average 8 year old girl.  She is on this list because, “while looking average” has a huge fight ahead of her!  As much as we try to downplay the intensity and heaviness of CF, it is there.  Every.single.day!!

Don't know if you can see her shirt, but it says Mahalo.  She made it herself.  Dreaming of Hawaii and surfing. =)

Don’t know if you can see her shirt, but it says Mahalo. She made it herself. Almost two years later, still dreaming of Hawaii and surfing. =)

Even when well, she struggles.  The pressure of treatments daily.  The worry over eating enough food to be able to fight off an infection that you know is only around the corner.  The concern over keeping up physically while her body fights just to breath some days.  I can only imagine the emotional struggles of these strong brave kids with CF.  I have had the joy of encountering some amazing adults with CF.  I love these people (most of whom I have never had the opportunity to meet face to face)  However, they are true friends.  They are strong, they are determined, they are positive, they are grateful, they are fighters.  Simply put…they are amazing!  My hope and prayer continues to be that Rachel will grow up with that same fight and love for life!

This gift of Make A Wish~ is precious!!  

As we plan and look forward to the fun and anticipation of this trip, I do ask for prayer.  Getting 7 people (including a baby and a boat load of CF equipment and med’s) on a plane and almost a half a world away, will be an amazing feat. =)  God is good and He is more than able!  We are people that don’t leave our house much.  I think we figure that we have been away from home less than a dozen times total since Rachel was born.  Most of our family is in town, so we don’t have a reason to visit out of town.   Also, it is pretty difficult for this mama who is such a routine person to handle the mental aspect of remembering everything that is automatic at home.  (Someday I may get better at this, but for now it is a bit of a challenge to remember everything.)  My husband gave me a helpful “nugget” the other day.   He reminded me that we really only need to concentrate on Rachel’s med’s and equipment (vest, 4 different neb’s, tubes, parts, 2 nebulizers, sterilizer ect) other than that…we can buy everything else there!  That DOES help simplify it for me.  =)

One last note~I thought was sweet.  Rachel’s voiced her true wish the other day.  It was to have a cure (pill that she could take in leu of percussion and breathing treatments, and not having to worry about sickness).  I am with her!!  I would trade that for ANYTHING IN THE WORLD!!  No trip on this planet would take the place of that wish…
but Hawaii is bound to help a bit while we wait for that cure!!

IMG_9769

Thankful for life and breath…and a wish that will come true!

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7 Responses

  1. I am so happy to hear that her wish is being granted! May Our Loving Father usher your wonderful family every step of the way!

  2. So very exciting and I can only imagine the emotions. Our CFer is 3 and as many times in my life I’ve done little things for MAW and other organizations that support activities for medically ill children, I never thought my child might benefit from it. I guess no one ever does.

    I hope you have the most amazing trip and the reality is that even if you forget a med, there are CFers in Hawaii too, so you could get the meds too.

    Have a wonderful time and try to forget, if only for a little while.

    • Thank you. Yes, parents of kiddos with special issues understand the excitement coupled with the hard reality of the emotional aspect of dealing with CF. Prayers for your little CF kiddo.

  3. AWESOME!!! Which island are you going to?? Would love to give suggestions if your are going to the BIG ISLAND!! We loved living there and all the adventures we had!!!

  4. When is the trip? You won’t be flying through Seattle will you?

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