Friday, July 3, 2009

Blog Hop

Welcome to our site! Today starts the weekly blog hop, and I would like to introduce our little family.

For those of you who do not have a blog, but follow our story, now is a great time to take a peek at the many other bloggers out there. Just a warning, there are many adorable kids and amazing families out there that have incredible stories. Be prepared to spend a lot of time online reading all of their blogs!


Our almost five month old (yikes, how did that happen?) son Gavin was diagnosed with the life-threatening disease, Cystic Fibrosis, when he was just five days old through the newborn screening test. We have absolutely no family history of this disease so it came as a huge shock to us, our family, and our friends. As devastating as his diagnosis is/was, we are so glad that he was diagnosed at such a very young age so we could begin his preventative therapies right from the start!

We live in the "frozen tundra" of the north and find it to be a huge blessing to be located very near the University of Minnesota which has one of the best CF Clinics in the world! Sometimes it is hard to believe that our little man already has a team of doctors fighting for him (pulmonologist, respiratory therapist, nutritionist, genetic counselor etc), but we are so lucky to have them in our lives. Because of their dedication to this nasty disease, we are able to live a fairly normal life with our beautiful little boy!

We have decided to raise Gavin just like we would raise any other little boy. Don't get me wrong, we do take many precautions before letting our little guy out in the world, but we are doing our best to allow him to live as normal a life as possible.

Currently, Gavin does about one hour of breathing treatments/chest therapy a day. At his young age he tolerates them so well! He often falls asleep/stays asleep throughout them. He also takes pancreatic enzymes with every "meal" allowing him to absorb the fat & nutrients in the food that his body otherwise would not be able to absorb on its own.

Gavin has two gene mutations that caused his disease. The mutations are Df508 and G551D. We are again so incredibly lucky because there is a medication in the works called VX-770, which is geared for the CFers with the G551D mutation, that will correct the defective cells in his body, allowing them to function normally. Hopefully Gavin will have access to this new drug in the next couple of years. It is currently in Phase 3 of clinical trials (out of 5 phases) and we should be able to get him on the medication once it hits Phase 4. To make a long (and complicated) story short, it has the possibility of controlling his CF like asthma is controlled with an inhaler, how cool is that! Out of the 30,000 people in the US with CF, only 300-600 people live with this mutation. This new drug gives us great hope, and many people are calling it the "cure for CF."

We have been told by our doctors that Gavin will live a normal lifespan, thanks to all the new and amazing advances in medicine. Yes, it does take a lot of work to keep our son "healthy." And yes, our lives will be a rollercoaster with many ups and downs. But we are so ready for this bumpy ride and love our little man more than life itself!

Thanks for stopping by and we hope that you follow us along as we embark down this crazy road of life!

** For more information on Cystic Fibrosis, please visit www.CFF.org


MckLinky Blog Hop



17 comments:

  1. Thanks for hopping by! Your guy is adorable. My littlest is 7 months so I'm an expert you know!

    Are you going to the MckPicnic? *grin*

    ReplyDelete
  2. Thanks for stopping by the blog. Your journey is meaningful to me and I wanted you to know that we are praying and fighting with you to defeat CF. We have a close family friend whose son has CF and so we have walked closely in prayer against this disease. Also, Norrah tested positive during her newborn screening (though that ended up being false) but either way it is a disease that is personal to us and so we stand with you and kneel to pray with you too.

    ReplyDelete
  3. Wow...what a story! I am a L&D and peds nurse and it really "gets my goat" when people think that the newborn screening is a way for the government to collect our children's DNA (my hubby brought that up to me...I let him have it, politely, but firmly!!) and also that people REFUSE this screening. I am so glad for your Gavin that he was diagnosed so early! My prayers are with him and your family! Keep up the great work! Oh, and PS--I live in the Frozen Tundra as well!

    ReplyDelete
  4. Just hopping by. Your little one is just precious. I will pray for God's healing and His peace.

    ReplyDelete
  5. your little boy is adorable! i work for the other CF center in the cities! i'm so glad you are able to raise Gavin like any other little guy! i'll be praying for you. i'll put it on my girls' prayer list. they have a friend named gavan so this will hit home with them.

    ReplyDelete
  6. I'm out blog hopping, just wanted to say hi!

    ReplyDelete
  7. What an adorable little boy! Hoppin by to say hello! Have a wonderful weekend!

    ReplyDelete
  8. Your son is soooo adorable!!! What a blessing you live so close to that university and the hope of that new drug is amazing. Thanks for sharing your story and happy blog hopping.

    ReplyDelete
  9. Stopping by from the blog hop. Have a great weekend.

    ReplyDelete
  10. Out Blog Hoppin today! Nice to meet you!
    I'm a homeschool / SAHM to 3 -- Living in Louisiana -- Hope you come by to visit.
    Keeping your family in my thoughts and prayers. You baby is precious.

    Have a Happy Fourth!

    ReplyDelete
  11. I’m Blog Hopping! Hope you have a happy and safe 4th of July.

    Please stop by Lin's Duck and Wheel With String to vote for me, Lola, in her First Official Dork-Off Contest. Vote for my photo, because my kindergarten photo is THE dorkiest.

    http://duckandwheelwithstring.blogspot.com/2009/07/first-official-dork-off.html

    Thanks!
    Lola

    http://lolasdiner.blogspot.com/

    ReplyDelete
  12. What a Cutie!!!

    You're right. . . my daughter just celebrated her 1st birthday. The time flies!

    Happy 4th!

    ReplyDelete
  13. What a sweet little man! Hopping in from the blog hop to say hello. Have a fun and safe Independents Day :)

    ReplyDelete
  14. Stopped by from the blog hop. What amazing parents you guys are! And what a cutie you have on your hands.

    ReplyDelete
  15. Hopping by....your story is inspiring. It is good to meet you.

    ReplyDelete
  16. Hopping by!Nice to meet you. I am Not John Chow. Stop by my blog and say Hi! Some time.

    ReplyDelete
  17. Hopping by!Nice to meet you. I am Not John Chow. Stop by my blog and say Hi! Some time.

    ReplyDelete