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.75 years old

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That “75” has a nice ring to it doesn’t it?  Especially in years as it relates to a CFer. Sutton is 9 months old, which equates to 3/4 or 0.75 years, but she will definitely keep going upwards and beyond 75 years old.  After all of the hardships we encountered at the first of 2013, we sure have come a long way.  We haven’t had any reason for the hospital and our visits to the CF clinic are becoming less frequent.  We have so much to be thankful for and her progress had been such a big part of that.  It seems too hard to believe that it wasn’t that long ago that we were regulars up on 5 West.  We know we could see 5 West again someday, but we are feeling good about Sutton’s health for now.

Since our news story aired in May, a few things have happened.

Sutton had her July CF clinic visit, two months following the previous visit!  We made it two months between visits without any concerns and are still going strong.  The visit was a very good visit.  We met with the doctors, nutritionist, nurses, and respiratory therapist(“Uncle Robert”) and everybody had good things to report.  She is breathing well, maintaining a healthy weight and no signs of any breathing distress.  The visit was not only good for us but for the clinic as well in their new location.  The clinic is much nicer, still close to home and the best part is that there is plenty of parking.

Sutton’s next round of visits were to Dr Wise, our pediatrician.  The visit went very well with all good things to report.  Dr Wise was happy with Sutton’s growth of 75th percentile in weight and 95th percentile in head circumference.  As I mentioned before in an earlier post, we are closely watching her growth through the first year.  Significant growth is an indicator of healthy lung function later in life for a CF baby.

We are starting to see some other growth as Sutton is learning and showing us new things every day.  So far she is waving and saying “Hi” and “Bye-Bye”(in a better than baby speak), pulling up and standing on her own unsupported as well as crawling just to name a few… It won’t be long before she is ready to read.

Team Sutton Grace is in full preparation mode for the CF Cycle for Life on November 9.  As we meet with the other board members, it’s always encouraging to know that we are all fighting together.  It is easy for a new parent of a CF child to be energetic about fundraising, awareness and curing the diseases.  We all have a motivation to keep us going.  It is when we finally get a chance to take a breath and realize what it is that is amazing about the people fighting along side us.  They didn’t start this fight when we did.  They were already in the fight and some of them for a long time.  It is a great feeling to know that we just help fuel the momentum and not that we are picking up slack or reigniting the effort.  We are a part of something that we know will find a cure for CF and these type of people won’t stop there.  We will fight for something else when CF stands for cure found.

It is truly amazing to see how far we have come since we began this journey.  We know that there will be many challenges along the way, but we embrace every minute of being a part of Sutton’s life as we move along.  She has taught us so much and continues to teach us and others things like patience, love and most of all the true meaning of Grace.  We are looking forward to the years ahead.

6 responses »

  1. Peggy Williams

    It sounds like this has been a good summer–so glad y’all have been able to enjoy it! Thinking of you a lot and delighted with your update! Love, Aunt Peggy (and Uncle Ken)

    Reply
  2. Greer Dierkes

    We are so happy that things have been going so well! What great news! Keep it coming~

    Reply
  3. Murphy, Linda - Georgia Chapter

    LOVE your new picture and blog!!! She’s in her Fourth of July finest ☺

    Can’t wait to see what you write about for the Southern Bicycle League magazine article! You both are very powerful writers ☺

    For a Cure,
    Linda

    Reply
  4. Lorna Marchiolo

    Jeff and Brittany,
    I am so thrilled for you and Sutton and Hiatt! You have truly made a positive out of this situation and I know that a cure is on the horizon. God bless you all

    Reply
  5. Wonderful post, Jeff. We love following Sutton’s progress and love seeing her in person even more. Thanks for the great t-shirts that we are wearing with pride.

    Reply
  6. She is just precious. Always remember that you have many, many friends to help you and support you! Love you all!

    Reply

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