Monday, November 5, 2012

CHOC Walk 2012 and Ella's Check Up


On October 14, 2012 our little family walked our first ever CHOC Walk in the Park.  Seventeen loved ones of family and friends joined us in support of team Ella Kate Daily.  SEVENTEEN!  Both our walker and fundraising goals were met and we couldn’t have done it without those of you that walked and/or donated, a big huge “Thank You!”  We have such a great group of family and friends and we are so blessed to have you all in our lives.  Your support means more than we could ever tell you.

As a family, we couldn’t be prouder to participate.  As we walked through the park I couldn’t help but feel a little overwhelmed with emotion.  There we were, seventeen of us, with our little Ella.  That day we got to hold her, squeeze her, kiss her, take pictures, and create memories with her-- All while so many (too many) parents and other loved ones walked “in memory” or walked “in support” of their little ones that were unable to be there.  And to see the recovering children, so little yet so seasoned with strength and courage!  It was an experience that I will never forget-- Today her Daddy I will hold Ella a little tighter, give her an extra kiss, and create a memory with her because we know just how blessed we are to have that opportunity.


· · ·  Fast Forward a Few Weeks · Ella’s Check Up with CHOC  · · ·

A couple tests and two weeks after the walk we had a scheduled 6-month check up at CHOC.  Ryan and I went into the appointment feeling confident, we left frustrated.

All tests came back normal!  Great, right? Ella has shown no signs of CF.  Great again, right?  Well, except one, slow/decreased weight gain.  In about six to eight months time Ella has dropped from the 80th percentile to the 35th in her weight (weight to height ratio that is).  Because of this her doctors are concerned and have recommended that our visits be at three months AND they would like us to have all tests retaken (plus a few more) at one year of age.  That's in about two months.

Insert frustration.  Without getting into all the nitty-gritty of it, Ryan and I are not 100% convinced that this is the right thing for us to put Ella through again (at least not right now) and are giving this MUCH thought before committing to anything.  It's a big decision for our little family.

As always, we appreciate everyone’s love, kind words, support and prayers.  We will keep you posted.

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