Have you heard about Firefly products? They are truly amazing! We have been blessed to be able to test out the Playpak, Splashy, and Scooot! Talynn truly loves ALL of them! The Splashy is one of my favorites! Splashy is a portable bath seat for kids with disabilities. It allows Talynn to be in the water … Continue reading Firefly’s Amazing Products
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
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
A few nights ago Talynn started having a bad cough (on top of everything else). We have started her breathing treatments again. I wish she didn't need them but she enjoys it. Plus, look at her holding it all by herself! That's an awesome developmental skill if you ask me 😊. Update: Tay slept … Continue reading Finding the Positive