Welcome to Pete's CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support, prayers and words of hope and encouragement! Thank you for visiting.
Pete was adopted from Tver, Russia in October 2012, at 15 months old, just one day after my (Amy's) 40th birthday. Best birthday ever! Pete was a quiet, sweet and happy little boy with a sensitive and inquisitive personality. His sister Anya, age 5 years at the time, was so happy to have a little brother, always looking out for him, and Pete was always watching and following her lead.
Developmentally, Pete was late walking, at about 18 months, and his speech was mostly babbling, but we were not concerned. It's common for children in institutionalized care to be delayed developmentally. Pete had a minor surgery for a cleft lip right before his second birthday. On November 2nd, just one year after being home, Pete had a bilateral hemorrhagic stroke. The right side of his brain had filled with blood, causing complete paralysis of his left side. He also had a smaller area of blood affecting the left side of his brain. The stroke was caused by broken blood vessels in his brain, not by clots. Thankfully by the time we arrived to Children's Hospital of Atlanta, the bleeding had stopped. Pete survived. He was placed in ICU for 3 days, and spent 7 days in the rehabilitation wing, where he regained some of his mobility. The left side of Pete's face had recovered from the paralysis while we were in the hospital, but we had a long road ahead with regards to his motor skills. Doctors told us this appeared to be a one-time event, and assured us that because he was only 2 years old, the plasticity of the brain would make recovery quick.
About 6-9 months later, Travis and I assessed that Pete was not making what we would expect to be a "quick" recovery. We scheduled visits with his neurologist, Dr. Bryan Philbrook, and with a developmental pediatrician, Dr. Leslie Rubin. Pete was diagnosed with speech apraxia in 2014, as well as Cerebral Palsy. Later that year, MRI results showed that Pete's brain had one or two small lesions, or areas in the brain that showed dead brain cells, beyond what had been caused by the initial stroke. This was concerning. Blood tests were taken. A spinal tap was performed. Dr. Philbrook reviewed the results, trying to rule out one thing or another, but nothing concrete was found. Pete continued to receive OT, PT and speech therapy several times a week. In 2015, during a routine MRI, Dr. Philbrook came into the waiting room and told us that Pete was having a metabolic stroke during the MRI, which was evidence that indeed, something was causing Pete to have strokes. This event rattled us - doctors don't make visits to the family during an MRI scan. Dr. Philbrook immediately referred us to Dr. William Wilcox at Emory Genetics. After many tests, Pete was diagnosed with a rare mitochondrial disease in 2017. Specifically, Leigh's disease. Dr. Philbrook continued to keep Pete's case on his desk, and helped formulate a "Mito-cocktail" of vitamins that would best serve Pete's needs based on the results of the blood tests. To date, it's served him extremely well, and we are extremely grateful for his help.
Pete continued to suffer occasional metabolic strokes caused by the disease. This disease affects all sufferers in different ways, and no two are alike. It is incurable, and there are no medications available that hold off or reverse the disease. Mitochondria are the powerhouse of the cells. When Pete's body suffers an illness, a fever, a growth spurt - anything requiring extra energy - his mitochondria cause cell death in the brain. As an example, in 2018, a case of Hand, Foot, Mouth disease made it's way through Pete's elementary school the week before a school break, and Pete got the worst of it. Along with a fever, he broke out in blisters around his nose, mouth, groin and armpits. The skin around his nails started peeling off, and eventually caused all of his nails to fall out. This was the catalyst that caused Pete to lose his ability to walk. Within 3 months, he was using a wheelchair and has not regained his ability to walk.
From 2019-present day, Pete has had a miraculous period of good health. During Covid-19, he attended school whenever school was open, at his request. He has chosen quality of life over quantity, and we support that too. He hasn't had Covid, nor the flu, nor an illness with even a low grade fever for these last 3 years. We credit this to the abundance of prayer said on his behalf, and his vitamins. Pete's positive attitude plays a big part too - he's always been a happy guy, braving the endless doctor appointments, giving his best during more than a half dozen therapies each and every week in school and out, and making the most out of all the encounters he has with able-bodied kids. He suffers well.
Pete is now 11. He always has a smile on his face and loves to make us laugh. We laugh the most when he is rolling in laughter himself, and usually it's his sister Anya's wit and drama that gets it done, or from slap-stick comedy on T.V. or in a movie. His faith is big, and he has a huge heart for Jesus' mother, Mary because, "She prays for me". His faith and trust in God exceeds our own and he inspires us in many ways to be more Christ-like and child-like. He loves school and spending time with his friends. Pete loves the police and soldiers, yet fully supports the Star Wars First Order (AKA The Bad Guys). His Make-A-Wish trip to Disney in 2019 was to meet Darth Vader! Pete loves Legos, and spends hours building police vehicles and ordering his family members to build (and rebuild) his Lego sets. He can be impatient, but that tends to run in the family...on Amy's side. We often move at a snail's pace on the outside, but on the inside, Pete says we're moving as fast as a police car.
Pete's wish from all of you is this: Prayers for a successful surgery. His surgery takes place January 4th, 2023.