Stepping into my role of being a mother to an amazing little boy, I wanted to shine light on his condition. My son Braxton was born on December 24th, 2016, my Christmas Eve baby. After being delivered Braxton was diagnosed with a health condition called Hydrocephalus, which is a disorder that causes the head to swell due to the accumulation of cerebrospinal fluid in the brain, which destroys surrounding brain tissue. In some cases, this can cause the head to steadily grow in size, convulsions and brain damage. Initially we were told that he would be lucky to survive to see his first birthday. Well amazingly he certainly beat those odds, his care turned from end of life services to long term care.
Braxton had his first brain surgery to have a VP shunt placed when he was two months old. A VP shunt is a medical device that relieves pressure on the brain. So far, his shunt has helped with the pressure and fluid buildup, his head size is continuing to grow but the doctors are watching it closely. Most days he is fussy and cries, but we can only imagine what he may be feeling, the possibility of having a dull headache or just the pressure build up alone. Due to the fluid build up in his head, it’s extremely hard for him to hold his head up on his own.
Braxton has therapy on a weekly basis, he sees a Physical, Vision, Occupational and Feeding Therapist. They all work together to help him improve his developmental delay. Braxton also has CVI, Cortical Visual Impairment, basically the way he sees things is like looking through a block of swiss cheese.
I worked full time, but due to Braxton’s daily needs I had to quit my job and focus all of my time on him. This to me is a small sacrifice as I am committing to giving Braxton the best quality of life, which he deserves. As he continues to get bigger, more challenges seem to present themselves. He has a wheelchair that is being made, the vehicle I have is small (Ford Fiesta) and I am asking for help with getting a bigger vehicle to help hold his wheelchair and make being mobile a little easier for him. He has regular appointments with his team of wonderful doctors, he sees a Neurosurgeon, Neurologist, GI, Pediatrician, and Ophthalmologist on a regular basis.
I want to thank you all so much for your support. We appreciate everyone's prayers and concerns and the out pouring of love for Braxton. Braxton is a very lucky boy to have such a wonderful group of family and friends in his life, we LOVE him!