Happy Birthday Talynn!
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.
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 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.
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
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
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
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.
Everyday, I hear parents talking about how their child did at the t-ball game or dance recital, I look at photos of children interacting with one another , these everyday life interactions with children are the norm. Medically fragile children don't have groups they "fit in", especially ones living with Bohring-Opitz Syndrome. There are fewer … Continue reading “Fitting in”–Interacting with one another