Introduction

This is Carson.  He is my beautiful 4 y/o son.  He is living with a rare genetic condition.  It is so rare that at this moment it doesn't even have a name.  For now it is "simply" known as chromosome 15q24 microdeletion syndrome.  Each child seems to be different but for him this condition causes him to have hypotonia (low muscle tone), hearing loss, cognitive delays and Duane syndrome-which means he is missing a cranial nerve and it affects his eyesight.  He has also been diagnosed with Sensory Processing Disorder or SPD for short.  For him, he is very sensitive to bright light, textures, loud sounds and crowds.   He is nonverbal which poses a lot of challenges.  He is also still in diapers.  But more than all of that he is loving, funny, handsome, smart and entertaining.

Carson is not an only child.  He has an older sister who is 8.  Where Carson is at one end of the spectrum she is on the other. Baylee has always been advanced.  She started walking and talking months before she should have.  Even now going into the 3rd grade she is being placed in 'gifted' classes because of her recent Terra Nova scores.  Sometimes it's hard to keep up.  To explain things as in-depth as possible for one and as simply as I can for the other.

I never really thought about writing a blog about what we have been working through these past four years but was given the inspiration after meeting with Carson's ENT about a month ago.  It could help other people going through similar situations and also be therapeutic to me he said.  So here I am. Putting it all out there....