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Seems like its been awhile since I’ve given an update on cf stuff, and a few things have happened that I wanted to make sure got recorded…

ASHER’S VIDEO – The Cystic Fibrosis Foundation contacted us and asked if they could have the rights to the video that Jeremy made for the first teamASHER Silent Auction to share at some of their major fundraising events.  Um…YES!  We were so blessed and thrilled that they would want to use our video of our sweet boy to create awareness and raise money for the Foundation.  So the first event Asher’s video played at was a huge golf tournament here in town.  After the event the director of special events for the Foundation emailed me and said, “I just wanted to let you know the effects of Asher’s video.  An attendee of the tournament watched your video and he immediately gave a $2,000.00 donation because of it.”  Are you kidding me!!!!  We were beaming with excitement.  That’s just so cool.  The next major event that Asher’s video will be played at is the Breath of Life Gala put on by the CFF in Tuscon.  This Gala honors individuals, families and companies who have given their outstanding support and have brought a breathe of life to the Arizona Community.  What an honor that they would want to thank these people for all their hard work by showing them someone who they are helping…our someone :).

Asher’s nurse (have I mentioned how much I LOVE her!!!!) also uses this video to play for all of the new nurses and doctors, and anyone who is touring the office.  About a month ago she was showing it to a couple of women who are a part of AZ’s FINEST, which is a group of 10 couples who have been selected by a panel for their leadership qualities, active in volunteer roles, and have excelled in the AZ business community.  These people have basically committed to raising thousands and thousands of dollars for the Foundation.  Well, I spoke with one of the ladies a few days after she saw the video and she asked if she could throw a fundraising event for the Foundation and have Asher be the little face or honoree for the event.  Again, um…YES!

BREATHE EASIER NEBULIZER MASK HOLDER – If you didn’t see the post I made promoting this mask holder, and you have a child who has to do breathing treatments, then you need to check this link out!  My super talented friend, Melissa, created this mask holder for Asher awhile back, and lots of people are benefiting from her talent and skill.  I read a lot of other CF mommy blogs, and it has been so fun to see these families start using this mask holder.  Melissa said she is averaging making about 2 a week for families, and that just absolutely excites me to hear that people are benefiting from her invention, because it has really changed our lives by making treatment times sooooo much easier.  Melissa updated her etsy page with some testimonials and a couple of pictures of some other children wearing their mask holder.  LOVE IT!!!

http://www.etsy.com/listing/45103961/breathe-easier-nebulizer-mask-holder

CYSTICLIFE.ORG – This site has been an absolute blessing to our family!  Our crazy fun friends, Ronnie and Mandi, are the masterminds behind this site, and it has been an incredible way to connect with other people with Cystic Fibrosis and/or caregivers for people with Cystic Fibrosis.  It’s kinda like a facebook for the cf community where we can all ask questions and get advice from other people in the know.  If  there’s one thing Jeremy and I have learned about this disease it’s that doctors are great and all, but Jeremy and I are truly the best care givers for Asher.  This disease is so unique for each individual, and we know Asher the best.  We are so thankful to have a forum where we can bounce ideas off of others, and seek some council from people who may have already walked down our path.  There have been a couple of times that Jeremy and I have been stumped in our care for Asher, and Jeremy has literally said, “just post it on CL and see what everyone says.”  We never really wanted to be a part of the cf community, but it is truly a community full of the most loving and caring people and we’re so thankful for them.

RED FOR CONNER – Little Conner got an absolute hold on my heart from the moment I started reading his mommy’s blog about his life.  Conner was a remarkable 7 year old boy with Cystic Fibrosis, who lost his battle to the disease a couple of weeks ago.  I’ve cried so much for this little boy and his family, I’ve gotten mad-furious at this stupid disease, I’ve squeezed and kissed Asher more reading about the heartache this family has been through, and I have this new fuel for creating awareness and raising money for research for cf.  Little Conner has officially changed my life, and I’m so thankful for blogs and the chance I’ve had to know him and his family.  If you’d like to read about Conner’s life, his mommy has beautifully recorded his life and the raw emotions she has been going through in loosing her son.

http://notsobrightandshiny.blogspot.com/

GERM GUARDIAN – This is our new piece of equipment, and I’m so in love!  Again, thanks to Cystic Life and people recommending it.  It’s been another great way for us to care for Asher’s breathing equipment.  Every night we boil all of Asher’s nebulizers and then put them in the Germ Guardian to be steam dried.  We also use it after Asher’s morning treatment so no moisture is sitting on the nebs and they are completely dry for the evening round.  Plus, it’s called a Germ Guardian for pete’s sake, it’s my new favorite thing :).

TOBI – So so so so so so happy to announce that Asher has had enough negative cultures for Pseudomonas that we get to TAKE A BREAK!!!!  Oh beautiful day!  We all hate those Tobi rounds, and to now have a break from the constant 28 days on, 28 days off nightmare cycle is AMAZING!!!!  WAHOOO!  Asher will continually be doing throat cultures to see if it has started growing again or not, but for now, we’re going to enjoy at least one month of not thinking about the horrid TOBI!  Thank you, Lord!

Whew.  That was long.  But, I guess there has been a lot of cf stuff going on!

Asher had to get all dressed up to make these announcements!  Actually, it was just a boring night around the house because Jeremy was gone, and I was dying to try this little suit on Asher.  Jeremy’s mom made it for Jeremy when he was 5 years old, and Asher was so proud to wear it and model for me.  This little suit is so special, and will probably be the only handmade thing Asher will ever wear…unless Grandma wants to break out the sewing machine again :).