I am excited to announce The Mighty Magazine chose to publish my blog "The Importance of Organization When Your Child Has a Rare Disease"!
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.
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.
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 year ago today marks the first time Talynn got a NG Tube (Feeding Tube in the nose). A year ago I was scared, didn't like the idea, hesitant, and any other afraid feelings you can think of. But what my husband and I did not realize was this was the way our child was … Continue reading Why Can’t Your Child Eat?? (Tube Feeding)