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 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)
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
BLESSED Yesterday, Chad and I were in total SHOCK with ALL of the people that were supporting Talynn and Bohring-Opitz Syndrome!! I cannot begin to express how thankful we are! We have also had the pleasure to be in many different articles. Please feel free to check them out and share them with your friends … Continue reading Blessed ❤
Why is it so hard?!?! I do not understand... why it takes so much to get someone to care for your child. Talynn has been sick for a week and a half and we still do not know all the reasons. We do know that Feb. 5th she had her vaccines, Feb. 7th she went … Continue reading Why is it so hard?!? !
Who am I? I am a physical, occupational, speech, and respiratory therapist, nurse, doctor, teacher, data collector, data analyzer, accountant, photographer, advocate, but most of all I am a MOM! Talynn is not your everyday child. She requires a lot more than the normal. I wanted to share with you some of the things that … Continue reading Who am I?