Thursday, May 30, 2013

May Clinic

This is my all time favorite photo.  Cayden doing his neb treatments in the car on the way to our North Carolina Vacation.  Fitting in treatments are what we face every day without fail.

We had the most amazing family vacation; I could go on and on.  But I wanted to share our last clinic appointment results in May.

Cayden, Trinity and Cooper all gained 2 lbs each-huge hurdle for them all (especially Trinity).  Cayden's PFTs were low so his CF pulmonary doctor wants him to come back in one month instead of his regular 3 month check-up just to repeat them.  He won't have a "full" appointment until August.  And while he wasn't overly concerned about the low numbers, he wasn't sure why they wouldn't be at his baseline level either.  It could be a pure fluke, but you just never know.  We left for our trip with Cayden coughing a fairly wet, barky cough.  After a few weeks it subsided, so my theory was that his month switch from TOBI to Hypertonic could be the reason. 

While we were on vacation, our friends (The Brown Family-Jackie and Tammy, plus Micah!) represented the Topel Trio as we raised our personal record breaking amount of $14,000 and counting!  We are so completely grateful for our family and friends' support in making this happen.  It is an exciting time for our kids and thousands of others waiting for the cure!  

Today is a bittersweet day-a year ago today I was posting a blog on Cayden's hospitalization.  It was a horrible day, but I am so very grateful for the care he was given and thankful for the blessings of good health this past year.  Its an incredible blessing to not be hospitalized, especially with 3 kids with CF.  Sometimes I think we take it for granted how healthy our kids our, not realizing how much worse it could be.  
My last pic for this post is our thank you postcard for this year!  It turned out better than I could have imagined.  I love what we do, I love what we are about.  I love that we are part of making a cure for CF!

No comments:

Post a Comment