I cannot begin to tell you how impressed I was to see all that were involved in the BOS Awareness Day on April 6th. So many people from around the world were #BOSAWARE! Bohring-Opitz Syndrome is growing. The number of patients has doubled in size since Talynn was diagnosed in 2015. It is increasing every … Continue reading I AM. WE ARE. #BOSAWARE
I am excited to announce The Mighty Magazine chose to publish my blog "The Importance of Organization When Your Child Has a Rare Disease"!
The day we were diagnosed with Bohring-Opitz Syndrome. This day will always have a special place in our hearts. The day we got an answer. The day we joined a family.
Having a child with a rare disease is a loving, caring, busy, never ending, supporting, advocating life. For my child, we have a primary care doctor, twelve specialists, four therapists, three nurses, two case managers, and the list continues. For most, managing this can be very difficult which is why organization is extremely important. Here are some of the ways I have learned to manage Talynn's care.
A few months ago, Talynn's pink glasses fell out of the diaper bag and her aunts dog got them. So we just used her navy ones until, we noticed ALL the scratches on the lenses. Talynn loves to chew on things so her little shark teeth had gotten a hold of the lenses pretty badly. … Continue reading Little Four Eyes