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
A few hours later, I received a phone call from Patricia Weltin from Rare Disease United informing me Talynn had been picked to be the face of Bohring-Opitz Syndrome.
For Talynn's third birthday, I wanted her to have something that most "typical" children have. Two of my friends, Sarah Halstead and Carrie Hunsucker, had just purchased/received an adapted car for their children. I immediately knew I wanted Talynn to have one. I started researching all the different types. I needed something with a higher back and remote control. Well I found it !
At 7:17pm, Talynn Gurganus came into the world. I saw her for a brief second and then the nurses took her. She was blue, not breathing, not making any noises. I knew something was wrong. I was a wreck. I kept asking if Chad could be with her.
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.
Talynn has been denied skilled nursing because Talynn's ADL needs and GI tube feedings can be delegated to a PNA (CNA). This means that Division of Medical Assistance (DMA) believes Talynn can be cared for by someone who cannot give medications nor administer or adjust oxygen. Respiratory is the leading cause of death for children living with Bohring-Opitz Syndrome.
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
A very big thank you to Chad and Taylor for sharing their daughter, Talynn’s, story of her journey through her first year of life, and her diagnosis of Bohring-Opitz Syndrome. You can read more about Talynn’s journey at her blog, Open Eyes, or follow them on facebook or twitter. – Ann Z Talynn Gurganus was born on … Continue reading Your stories: Talynn’s story