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 ❤
Category: Mommy of BOS Blog
Raising a child with Bohring-Opitz Syndrome. Blogging about love, hope, life, therapies, and everything in between. I am a mother of a beautiful baby girl, Talynn. She has taught me so much in the little bit of time she has been here. I have learned how to become an advocate, nurse, teacher, physical therapist, respiratory therapist, dietitian, and most of all a MOM! The title MOM has a whole new meaning when your child has been diagnosed with a rare genetic syndrome called Bohring-Opitz! I am writing this blog to help raise awareness for this syndrome and to let others know what it is like walking in this journey!
Why is it so hard?!? !
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?
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?
Daily Prayer
My Daily Prayers Every night I have always thanked God for the things he has given me... But last night was a little different. Yesterday, I experienced the most scariest thing in my life! My daughter, Talynn, was choking, she was turning blue, her oxygen was dropping into the 70s and the look in her … Continue reading Daily Prayer
The Wrong Words…
The Wrong Words… “I don’t know how you do it”… Do I really have a choice??? This is not the life I chose but the life that chose me! I would not change it. Just like most moms (we all know the other kinds) you fight for your child, you do not take NO as … Continue reading The Wrong Words…
Preparing for Talynn <3
God's Plan... I entered the world on October 3, 1990. Little did I know God's Plan had already started. I always had that little spunk and attitude but on the inside my heart was still loving. As I got older I begged my mom for siblings. Little did I know then that she was told she … Continue reading Preparing for Talynn ❤
What is an adjective…
An adjective is a word that modifies a noun (or pronoun) to make it more specific: a "rotten" egg, a "cloudy" day, a "lovely" lady, or a "tall," "cool" glass of water. http://www.vocabulary.com/dictionary/adjective Not many people think about it... Not many people even realize it... I catch myself doing it... But thought I should still … Continue reading What is an adjective…
It’s a Winter ONEderland!!
Where do I even begin... last year at this time I was getting ready to go to work and Chad was running late so he had to drive into his work rather than catching the van. They were calling for snow in the next couple of days and my appointment was going to fall on … Continue reading It’s a Winter ONEderland!!
Sharing <3
Children with Bohring-Opitz Syndrome are very prone to respiratory infections. With this being said, Talynn is kept inside majority of the time and is not exposed to a lot of people. Of course when we go out Talynn can sometimes go but we keep her covered. It is not easy explaining to people to stay … Continue reading Sharing ❤
Disability or Disabled… that is the question I may NEVER understand!
Let's start from the beginning.... Talynn was born at 35 weeks and spent 3.5 weeks in the NICU. During that time, I stayed at the Ronald McDonald house in Norfolk. After being discharged, we ended up with TWELVE different doctors and hospitalizations EVERY month since July. During each hospitalization we stayed anywhere from 2-5 days. … Continue reading Disability or Disabled… that is the question I may NEVER understand!
Talynn's Journey 