Let's Give Kids a Chance to be Kids!
Hi Bennett's Buddies!
Five years ago today, Bennett was in surgery. They were removing half of his right lung and an “unidentifiable para-aortic mass”. We sat in this big waiting room and saw parents come and go, as we waited. We had NO idea how bad the next week would get. Right now I’m playing Mario Kart with my insanely smart, kind, beautiful boy who is starting kindergarten this fall.
For those of you that may not know, Bennett is a medically complex warrior who has navigated through his first five years with more courage, grace, and resiliency than I could ever have. He truly is a medical miracle.
To summarize the last five years...
- We received a diagnosis of situs inversus in utero. His major organs are all transposed. (For example, his heart, stomach, and spleen are on his right. His liver and gallbladder are on his left. His left lung has three lobes. His right lung HAD two lobes.)
- In utero we also received a diagnosis that Bennett had a condition called a CCAM congenital cystic adenomatoid malformation / CPAM congenital pulmonary airway malformation (language used interchangeably). From there, we had bi-weekly ultrasounds to monitor the growth of the masses/cysts on the lung. (If it grows too large or too fast, scary stuff can happen to the baby. We were very very fortunate to have minimal growth through the remainder of my pregnancy.)
- Bennett had a complete lobectomy at 4 months old. He has one-half of a right lung.
- After his lung collapsed post-surgery, his little body couldn't sustain breathing. He was placed on a ventilator in the Pediatric ICU for four of the longest days of my life. He spent a total of 7 days in the PICU.
- Bennett spent 3 weeks inpatient in his first 5 months. Dan and I literally moved into the hospital and didn't leave the entire time.
- He had a second surgery at 6 months.
- Bennett spent five months in a helmet to correct his plagiocephaly.
- Bennett has hypoplasia of the right cerebellum, meaning his right cerebellum is mildly underdeveloped. We have monitored him for anything that may be attributed to this, such as motor function impairment, seizures, etc.
- He was diagnosed with a condition called Duane syndrome. He doesn't have full right eye motion to the left or right.
- Last year he underwent his third surgery.
- He may have another surgery in the next few years for something called a 'sprengle deformity' (a rare congenital skeletal abnormality where one shoulder blade sits higher on the back than the other).
- Due to his numerous congenital anomalies, he has been seen by genetics, oncology, neurology, ophthalmology, orthopedics, plastics, cardiology, pulmonology, pediatric surgery, endocrinology, cranio-facial, and urology.
Most importantly, this fall he will be seen by the best specialist of all: a kindergarten teacher. My sweet boy is starting school this year and the emotions of how far he has come are like a tornado. Sometimes I can’t believe everything that happened actually happened.
I have an incredibly special little boy. He is loving, affectionate, funny, and smart. He is my everything.
Katie Couric once said, "Sometimes you find your calling, and sometimes your calling finds you." I never in a MILLION years would have thought that our lives would have taken the twists and turns that it did. But here I am, with an unyielding desire to help kids see the future they deserve.
Community fundraising helps UPMC Children’s Hospital of Pittsburgh provide hope and healing to sick kids and families. Your support can help Children’s Hospital continue to be a leader in pediatric health care – advancing research of childhood conditions and diseases, and developing new and improved therapies.
You can help me reach my fundraising goal by making a donation on my fundraising page.
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