Sunday, May 22, 2011


If you haven't read on Facebook yet, Ryan has a new girlfriend.  

This is Waverly:

Isn't she so precious!!

I hope her Mommy and Daddy don't mind me "stealing" the picture.

She was born on Mother's Day and was diagnosed last week with Miller-Dieker Syndrome, same as Ryan.  Her family lives in Roanoke...only 45 minutes away from us.

She had surgery for her PEG tube (feeding tube) on Wednesday of last week, and is now having some problems with Reflux.  She may have to go to UVA or Wake Forest to have another procedure done to wrap her stomach to prevent reflux and aspiration.  The procedure is called a Nissen.  I will keep you updated on wether or not she will have this procedure.  If she doesn't go by Wednesday, I am planning on going by the NICU to visit her and her parents.  Ryan already has an appointment in Roanoke that day and I would love to meet Waverly and would love for them to meet Ryan.

I am sad that she has been diagnosed with MDS but am glad that we can be there for her parents to help guide them through it all.  Trust me, it is A LOT to learn and figure out.

When Ryan was born, I wished I could have connected with a family and physically touched them and their child with MDS.  I am so glad that they have that connection with us and I know we will be close friends!  They also have two other children.  We seem to have a lot in common already!  :)

Please pray for Waverly and her family as they adjust to their new normal with Waverly.

You can also follow her journey here.




  1. HI! I'm Cristen and Johnny's sister in law and I've found you on facebook and your blog! Thanks so much for reaching out and sharing with them (us)! Your boys are so cute!!

  2. Thanks for posting about Waverly, and for ALL your help and support already. Ryan's girlfriend...hehe! :)


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