Henley's medical bills & equipment
Our granddaughter, Henley Laura Pulliam, was born on July 8, 2015 with a rare condition called Hydrops Fetalis. It is a life-threatening condition where there is an abnormal collection of fluid in at least two fetal organ spaces. Up to 90% of babies diagnosed with Hydrops do not make it home from the hospital. Luckily, Henley survived and is about to celebrate her first birthday!
The complications at birth, however, have created a number of other issues. Henley has been diagnosed with epilepsy and experiences approximately 100 seizures daily. She has also been diagnosed with cortical vision impairment (CVI), a visual impairment which occurs due to injury of the brain, and she sees at around 13% of what most babies do. There are also several other issues that cannot be diagnosed until she’s a little older, one of which could be Cerebral Palsy. Henley currently weighs 16 pounds and weight gain is a struggle due to Henley's tight muscles. Her tight muscles cause pain and limit her physical coordination.
Henley sees physical, occupational, and vision therapists weekly and sees doctors, neurologists, and other specialists on a monthly basis or as needed. She has an average of 16-20 medical appointments per month, about half of which she must travel 2 hours to get to. She takes six different medications at this point. Even with good insurance, her parents are overwhelmed with medical bills and occasionally have to dispute coverage on certain tests, medicines, or therapy.
Our goal is to ease the financial burden so Henley’s parents can focus on her health, minimize her seizures and continue to pursue advancements in her vision and physical therapies.
Henley loves to be swaddled and held tight. Henley loves to be outside (with sunglasses to protect her vision) and she loves water—baths, pools, anywhere she can float and relax her muscles. Henley has 2 teeth and loves apples, blueberries, and mashed potatoes. Henley can see the color red the best and enjoys following light. More often than not, though, Henley is fussy or crying so we want to bring as much happiness and opportunity to her life. Henley’s family would be thankful for any help you can offer so that they can focus on Henley's recovery. We also appreciate your positive thoughts and prayers.
With love and thanks to all,
(The Meyer, Aitken, and Pulliam families)
Also, in October, it was learned that she is far-sighted in addition to her early diagnosis of CVI (cortical vision impairment). Henley got a cute pair of teal glasses in hopes this can help in some ways with her vision.
Thank you to everyone for the continued support without much update for a few months. The next steps as Henley grows will be to get her a feeder chair and a stander that will help in her therapy and standing goals. Our family thanks you all for your continued support and generosity. We wish you a very Merry Christmas & a Happy and Healthy New Year!