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 !
Happy Birthday!
Happy Birthday Talynn!
Three years ago today!
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.
Talynn’s Journey with Bohring-Opitz Syndrome
On January 14, 2015, the genetic blood work came back and confirmed Talynn had Bohring-Opitz Syndrome. Talynn’s first year of life was her hardest, but now that we know that she has BOS, it helps us better prepare for the hard days.
The Day We Joined a Family
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.
The Importance of Organization for a Child with a Rare Disease
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.
Bohring-Opitz Syndrome Awareness
As many of you know, Bohring-Opitz Syndrome has a special place in my heart! When Talynn was diagnosed there wasn't a ribbon, colors, nor awareness day. I knew that these things needed to be created because someone as special as Talynn deserved to have a special day! Well I got one of my friends to … Continue reading Bohring-Opitz Syndrome Awareness
Catching Up
WE GOT NURSING! I am trying to catch up from a busy couple of weeks. I have started back teaching and LOVE it! Thankfully, DMA overruled their decision for Talynn's skilled nursing. Talynn is well taken care of which has allowed me to return to work teaching 4th grade math and science. WE GOT HELP! … Continue reading Catching Up
The Window of Light
As I sit in this room and reflect on why we are here, I face the flashbacks of seeing our child with pale skin, purple lips and hands, and no pulse or heartrate. One of the hardest longest moments in my entire life. Chad and I sat there doing everything we could to awake her … Continue reading The Window of Light
Services being cut for medically fragile children!
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.
Talynn's Journey 