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 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.
I am more than happy to announce that Bohring-Opitz Syndrome now has a foundation!!! Carrie (a BOS mom) and myself had been discussing starting a foundation, we knew it was going to be a lot of work but also knew it was something that BOS needed. With the help of our two additional board members … Continue reading Bohring-Opitz Syndrome Foundation
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)
With our recent post on Facebook I figured there were probably many questions... so I am going to try to answer as many as I can think of... Facebook Post Video (click this link if you did not see the post) What is the chance the baby will have BOS? Well... me and the doctors disagree … Continue reading The Recent Video on Facebook
My Everyday As I sit here and write... I know it could be worse but could also be better.... I know my pain is little compared to others but also some have no clue.... I face everyday wondering how I can help better my child... I wonder why in this world it has to be … Continue reading My Everyday
The night and hours before surgery... No matter how many times my daughter has had surgery it never gets any easier. Watching our daughter be taken down a long hallway by people we have only met a handful of times then to sit in a room watching a tv with your child's number on the … Continue reading Surgery Days
Where do I begin... Faith has gotten me to where I am today but that does not mean it has not been a struggle! I struggle DAILY but I have to continuously tell myself that "God brought me to it, he will bring me through it". Yes, if you look at me I am a … Continue reading Struggles Behind The Faith
Bohring-Opitz Syndrome Awareness Day (April 6th) Awareness: noun 1.the state or condition of being aware; having knowledge; consciousness: http://dictionary.reference.com/browse/awareness Awareness is something that I enjoy doing. I do it because I do not want to see another family/child go through the pain of being undiagnosed. My child went almost a year without answers. I cannot … Continue reading Awareness