Monday, September 2, 2013

Meet the Bees: Bee-ography

While we wait for families to submit some new bee-ographies and information for our "Meet the Bees Monday" series, I will be sharing previous posts from the series. If you have submitted a story before, feel free to share an update for me to link with your previous post. If you have never posted, and are interested, please email your story with pictures to: President@HydranencephalyFoundation.org

From May 16, 2011: Bee-ography Mondays

Starting today I will be sharing a story of one little bumblebee, our amazing little ones with a hydranencephaly diagnosis, every Monday in "bee"-ography Mondays. The stories will be written by their parent and/or caregiver and shared here... a tribute to their life and legacy to the cause. In doing this I hope to help those reading better understand these little lives that have such a huge impact on the ones that love them, while also changing the many misconceptions that exist surrounding this diagnosis. I encourage you to check back every Monday to read these inspiring stories that are sure to help you believe in the power of love and the strength of our little miracles.
Gabby was born June 24, 2009. Her diagnosis of Hydranencephaly came three days after her birth when doctors began noticing tremors and her temperature wouldn't regulate. A cat scan was completed due to these symptoms and that is when we found out her diagnosis.

After we found out her diagnosis, we were not given much hope for our little girl. We were told she would never make it to her first birthday and that babies with this condition live a poor quality of life. 


Gabby not only made it to her first birthday, but she excelled in everything. She ripped out her feed tube and began taking bottle, then at 10 months she began eating solids (far from the doctors telling us she will never feed by mouth). She advanced through the stages of food and even began eating table foods. She loved her food.

 Gabby began walking with assistance at just nine months. She would walk up my chest and she would walk across the floor if you held her under her arms. This was very far from the vegetative state we were told she would be in. Gabby expressed her needs by crying when she was in pain or when she was hungry. When doctors held her she would cry, but as soon as they gave her to mommy, she was fine. One doctor even commented "she knows who you are". 

 Gabby loved playing with toys that had a cause and effect. She played music on her toy piano, and enjoyed toys that you touched a button and it played music. Gabby would not hit the button until the music stopped. One thing we enjoyed the most was hearing her laughter and giggles. She got excited over babies crying and certain toys. 


Gabby was an amazing child who accomplished so much more then the doctors ever said. She proved to doctors that there is far more to a child with this condition and that they are far from a vegetative state. Gabby inspired many of her medical doctors to research this diagnosis a little more. 

 Gabby passed away at 17 months due to her heart stopping after she aspirated shortly after a rescue med was given.

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