The weather was PERFECT yesterday!  The boys and I were loving it.  Being outside in the sun but not roasting because there was an awesome cool breeze!  We ended the day in the bathtub to scrub dirty little toes clean that had gone barefoot all day:)

This little car was the toy of choice this day, I never know what they will do next!

Love all these toes!  Such a fun summer day:)

Well, most of it anyway!  Last Friday evening we got a call from Evans developmental pediatrician.  She said the words we have been waiting for for a long time, "I have an answer for you".  We have never heard those words spoken in regards to Evan!  After doing a $3,000 blood test that checks all of a persons chromosomes, we found out that Evan has Chromosome 17q21.31 micro deletion syndrome!  What a name huh?!  It is a very newly discovered, very rare syndrome that they really know very little about.   There is nothing new that we have to worry about with this syndrome.  It just explains what we already know about Evan: low muscle tone, developmental delay, speech problems, strabismus (eye alignment), seizures, and learning difficulties.  We will just call it "Evan Syndrome" :).  It is so good to finally know what was behind all these symptoms and to be able to connect with other families who have been affected by this.  I've already found 2 blogs and a yahoo group!! 

We are still looking into some other things that may or may not be related to "Evan Syndrome", but it is such a relief to have a big piece of the puzzle in place!  This summer will still be filled with doctor appointments, more testing and even more specialists but at least we are going into it able to say that we finally have a diagnosis for our mystery boy. 

Side Note:  The Geneticist said that he does have some of the characteristic facial features ( long face, bulbous nose, low set, big ears, blond hair, blue eyes that are slightly far apart...), but they aren't super pronounced or exaggerated.  We are pretty sure the hair and eyes came from daddy but whatever!!  I think he just looks like Evan, the same handsome boy he has always been!

(Picture by Jenny Hoke Photography)