Avery | CaringBridge

Avery’s Story
Avery Kate was admitted to Johns Hopkins on April 3rd with what we thought were complications from the flu. 3 weeks later we are still here and facing the fact that Avery needs a heart transplant.  Previously a healthy little girl with no heart issues, our world has been upended as we embark on this journey.  I hope to make this page a place for you to come on the journey with us. We are so blessed to have an amazing community near and far cheering, supporting, and lifting us up in prayer every single day.  We couldn't do this without your love.  XO

Newest Update

Journal entry by Jamie Doehne

Happy New Year to our brAVERY tribe! We have so much to share with you all since our last post.  
Let's start with our last clinic visit- which was another good report. So good, that she does not need to return until February!! We went from going every month, to 3 months! Avery remains on all of her meds and on the transplant list.  I read last week that we are halfway through flu season, and we are so hopeful make it through with no major issues.    
On December 12th we departed for Florida on Avery's MAKE A WISH TRIP!  Yes, she was granted a wish through this amazing organization.  Make A Wish grants wishes for critically ill children- they believe that one moment changes everything.  And for Avery, it absolutely did!  
After much discussion, she chose a trip to Disney World in Orlando, FL and most importantly, a visit to the Bippidi Bobbidi Boutique to have a princess makeover.  She watched videos of the boutique on YouTube kids almost everyday while in the hospital. This entire process was initiated by the hospital's PICU social worker, and we were approved of a wish before we even left the hospital.  Once our cardiology team gave the clearance that we could travel, the planning began!  We had 2 wonderful volunteers work with us to make sure we had everything planned for Avery's dreams to come true.  On the morning we left, we were picked up in a limo - and from the kids excitement over that, I knew this would be a trip to remember.  Once we arrived at the airport, we had so many people there to cheer us on.  It was an ambush at the gate, but it was so fun to have so many Make A Wish personnel there to make our send off so memorable!  We stayed at Give Kids the World Village, which is a nonprofit resort only for families on wish type trips.   Our visit included 3 days at the Disney theme parks and 2 days at Universal Studios. We squeezed in fun character meals, the Mickey's Very Merry Christmas Party, as well as a visit with Santa Clause! While at Give Kids the World, they had more character visits, parades, parties, unlimited ice cream, and the very special Castle of Miracles- where Avery will have a star on the ceiling as do all the other children who have visited. The boys would say their very favorite part of this trip was being able to ride all the rides without waiting in any lines.  We were given special passes that allowed us access to the front of every line (including characters).  Avery said it was the BEST WISH EVER! She enjoyed being the boss and making all of the decisions for her special trip.  And of course, her visit to the Bippidy Boppidt Boutique was the major highlight. We all expected her to chose the Elsa or Aurora dress, but she chose to be Elena of Avalor - from the Disney Junior show.  My favorite part was the love that everyone showed for my sweet girl.  While watching the Very Merry Christmas parade at Magic Kingdom, many cast members and characters saw Avery's MAW sign and went out of their way to say hello to her.  Santa from up atop his parade float, made a symbol of a heart and pointed to her.  It was beyond magical.  
We are so very thankful for Make A Wish Mid Atlantic and our cardiology team who made this trip possible for our family. We will truly never forget the experience.   
After arriving home, we anxiously awaited the holidays with school programs and family visitors.  This holiday was another reminder of the blessings God has given our family.  We hope 2019 brings a year of continued health for our girl.
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