Welcome back Bennett's Buddies
Hi friends and family!
It's hard to believe we are starting to coordinate and campaign for the Third Annual Children's Hospital of Pittsburgh Foundation's WALK FOR CHILDREN'S!
Last year, with your generous support, the walk raised over $700K. I am humbled and grateful to everyone that donated. As many of you know, I wasn't able to participate due to my father being in a car accident two days prior. As we all know too well, sometimes life has other plans.
Bennett is a medically complex warrior who has navigated through his first two years with more courage, grace, and resiliency than I could ever have. It hasn't been easy and, unfortunately, it's been a little scary lately. Often I forget that Bennett may still face challenges. Then, something happens, and it feels like someone has knocked the wind out of me...
Still, I remain thankful for how well he is doing.
To summarize the last two years...
- We received a diagnosis of situs inversus in utero. His major organs are 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.
- He had a second surgery at 6 months.
- 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.
- 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 monitor 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.
- He will 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).
- He is exhibiting a speech delay, which may be due to his cleft uvula, that we are in EI for, but have decided to bring Children's onboard at this point.
- 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.
He has had 2 MRIs, 4 CT scans, and at least two dozen xrays.
During our time at Children's we witness a lot. One evening in the PICU, I couldn't sleep. I was sitting in a waiting area at 3 am when I heard a woman screaming, "NOOOOO!" at the top of her lungs. I saw nurses walk out with tears in their eyes. I saw the room empty the next morning. I thought watching my four-month-old on a ventilator was hell on earth. Nope, that mom's reality was.
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 Children’s Hospital of Pittsburgh of UPMC 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.
Thank you for your support as I Walk for Children’s!
My Personal Web Log
Donations for Tammi Kramer
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