Walk, Run, Roll......Strides 4 CMV Oklahoma

Parker is a beautiful spirit with an infectious smile, bright eyes and a loving heart who relishes going to school and the YMCA. He loves seeing and interacting with his friends.  Parker is a ray of light to all he comes in contact with and loves to be the center of attention.  Parker has an overwhelming presence and loves to entertain crowds, whether it is on stage with a microphone, telling jokes, or hyping up s crowd; wherever he can find one.  Everyone who comes in contact with him falls in love with him, and he does not know a stranger, he includes everyone. Every bit of what makes Parker who he is, is a miracle that we do not take for granted. He has worked so hard to overcome a number of heartbreaking diagnosis throughout his life….

Parker was born very sick at 37 weeks. Parker’s mother, Cara had a normal pregnancy without any complications but at 37 weeks Cara went into labor early one morning in March.  Parker was born that afternoon with petechaie (blood spots) from the top of his head to his toes, enlarged liver and spleen causing jaundice, and severe bruising due to extremely low platelets.  Parker spent 9 days in the NICU where it was determined Parker was positive for congenital CMV (cCMV).  CMV is an automatic qualifier for Early Intervention Services (SoonerStart) and he began receiving physical therapy at just 6 weeks old.  Parker has Cerebral Palsy, Epilepsy, Polymicrogyria, hearing loss, developmental delays, sensory integration disorder, several other diagnoses, and needed surgery to correct his vision at 10 months old.  

At 10 years old, Parker still receives physical, occupational, and speech therapies weekly outpatient and at school.  Parker started using a reverse walker (mobility assistive device) at around 18 months old and began walking on his own close to his third birthday. He still has to use orthotics/ leg braces and receives Botox injections to help with muscle tightness in his legs.   Recently Parker was diagnosed with mild scoliosis, an abnormal curve of his spine, due to rapid growth and his muscles.  Parker faces challenges with daily living skills but is overall a very happy child. Despite the numerous diagnoses, Parker has overcome many obstacles and is achieving more than we ever dreamed possible!  

Brooks loves playing and watching all types of sports. He plays soccer, baseball, and kickball.  He has a mean left foot and you better keep your head on a swivel when he has a ball in his hands. Some of Brooks’ favorite things include watching planes take off and land, learning about sharks and gators, attending OU athletics, especially basketball, his dog Pearl, and cat Goose, and of course his family. There is nothing Brooks cannot do, and he amazes the ones around him everyday.

Brooks’ diagnosis with congenital CMV wasn’t discovered until later when he was a just over a year old. Brooks’ mom, Lindsey, had some complications during pregnancy showing abnormal findings on ultrasounds with him showing intrauterine growth restriction, smaller brain structures, ventriculomegaly, and an echogenic bowel. He was born small, but no further testing was done right after birth from pregnancy findings. Throughout infancy, Brooks wasn’t meeting milestones and he needed further testing and lab work to rule in or rule out specifics. After Brooks’ first birthday his parents were concerned he wasn’t responding to loud noises or his name, it was then discovered he had bilateral sensory-neural hearing loss. With this new news and the additional tests and procedures, it was determined that Brooks was born with congenital CMV.

Brooks was diagnosed with having white matter lesions and periventricular calcifications in his brain,  microcephaly, bilateral sensory-neural hearing loss, vestibular dysfunction, hypotonia, hypothyroidism, obstructive sleep apnea, and cerebral palsy.

Brooks needed to have feeding and swallowing therapy for 4 years, and continues to receive physical, occupational, speech, vestibular, and auditory-verbal therapies weekly. Brooks has worn SMOs and foot orthotics since he was a toddler to help with stability and pronation due to his low muscle tone. Brooks also wears bilateral cochlear implants. He received his first cochlear when he was 23 months and his second 3 months after. Despite all of the challenges Brooks faces, he continues to exceed expectations and surpass the goals that are set for him. He is fearless and full of fire.  He is the true meaning of a miracle.

Faith is 8 years old and will be in 2 nd grade next year. She loves everyone and is always offering to help those around her. She was recently awarded the Fantastic Friend Award which definitely describes her well. Faith loves cheer and dance. She has always gravitated towards those activities even though she has done well in soccer and basketball. She thrives being on stage where she can demonstrate her favorite cheer or cartwheel, and where she can get all dressed up with sparkly makeup. Despite the challenges she has had to face throughout her life, she always remains positive and just keeps on going. Her beautiful blue eyes and bright smile will make you fall in love with her instantly, but what is truly special about her is how she loves and sees the good all around her. She gives the best hugs!

Faith was diagnosed with congenital CMV when her mother, Colleen, was 19 weeks pregnant. Ultrasound showed abnormalities including severe oligohydramnios, diffuse echogenic bowel, poor fetal growth, and ascites. This prompted getting an amniocentesis which confirmed CMV by PCR of the amniotic fluid. Colleen was induced at 38 weeks. Faith had some petechaie on her abdomen, jaundice, and mild thrombocytopenia. She was immediately started on IV Valganciclovir which she would continue to take for the next 6 months. Faith passed her newborn hearing screening and had a short stay in the NICU. Faith had developmental delays
as well as dysphagia which prompted getting her on Early Intervention Services at 6 months old. Faith was diagnosed with epilepsy at 3 years old, speech and language delay, and severe bilateral sensorineural hearing loss at 6 years old which required the use of hearing aids.

Despite these adversities and challenges, Faith continues to make tremendous progress at school and even got all A’s on her last report card. She is happy and thriving and absolutely loves school. We are so thankful for our sweet Faith and eager to see what wonderful things she will achieve in life.

Anderson (age 4) is full of energy and brings laughter to all around him. He loves the color green, playing outside anytime he gets the chance, dinosaurs, cars and trucks (especially Blaze and the Monster Machines), and is excited to go to “big school” next year to start Pre-K.  

Anderson had symptoms on his 20-week ultrasound, specifically an echogenic bowel (a bright spot). His mother, Ellie, also had very high liver enzymes at the very beginning of her pregnancy. We did a TORCH screening, trisomy screen, and cystic fibrosis screen. Both CMV tests came back negative on all accounts (both for active and prior infection). All tests came back negative, which gave us a sigh of relief. (Unfortunately, we know now that the CMV was a FALSE negative for whatever reason.) The only other signs for concern before birth was a small head and IUGR (intrauterine growth restriction). The echogenic bowel had mostly resolved itself.

Our journey for his CMV diagnosis began shortly after Anderson was born. Following birth, he appeared healthy, with no outward signs of anything wrong. That evening after his birth, he continually shook. His mother, Ellie kept calling the nurse concerned. Finally, the nurses took him out for a few hours to monitor him. Overnight, he had failed two hearing tests as well. The next morning, the pediatrician came in mentioning concerns for his thyroid levels. Anderson was sent on to OKC by ambulance the day following his birth. Once all arrived at the hospital, the travel nurses that were with him in the ambulance came to talk to his parents and mentioned how they had given him 3 doses of phenobarbital (a seizure medication) because he was having seizures (an EEG later thankfully determined they were not). The doctors ran lots of tests the next few days to determine what was causing his problems. On Day 4 of his life, that Sunday, the doctors stated that he had tested positive for CMV. He then started the antiviral to treat the virus that had been fighting his development.  That’s when we started our search of, “what does this mean for our baby boy?” The range of results vary significantly but without doubt our baby showed symptoms. Anderson went to over a handful of specialists over his first year of life with therapies consuming that first year. With early intervention and the anti-viral, Anderson made great strides in his first year, nearly catching up to all milestones by 18 months old where he completed physical therapy. Anderson currently has a left cochlear implant and continues speech therapy.

Max is our mighty 2 year old who loves swinging, stroller rides, light-up musical toys, water and, most of all, being upside down. He is the most loving little boy who knows no stranger. He is the light in so many lives and has stolen so many hearts in his short life. 

Max first presented with a cyst at the back of the brain when his mother, Hollie, was 24 weeks pregnant. His overall growth was small, too. The specialist wanted to see Hollie back at 32 weeks gestation to give Max time to develop in the womb. It was at this visit where his brain anomalies now included a bigger cyst at the back of the brain (mega cisterna magna) and enlarged lateral ventricles (ventriculomegaly). He was also now considered to have intrauterine growth restriction (IUGR). This is when Hollie was tested for CMV infection which showed no active infection, but a previous infection. The specialist diagnosed Max with Dandy Walker syndrome as a result of the negative CMV test. An amniocentesis was also performed at this time. Max came into this world a day shy of 37 weeks gestation only weighing 4lbs 12oz and 17.5”. He presented with petechiae, low platelets, irregular heart rate, jaundice, and a failed newborn hearing test (twice). Miraculously, he had no NICU time. We left the hospital with a Dandy Walker Syndrome diagnosis. It wasn’t until his two week newborn appointment when Hollie insisted (or demanded) he be tested for CMV, and that’s where his true journey began. 

He took oral Valganciclovir for 6 months. He started Early Intervention Services around 6 weeks old and got his hearing aids at 3 months old. He continued to have progressive hearing loss and got his first cochlear implant at 7 months old and his second at 17 months old. 

Max continues to attend, on average, 7 therapy sessions per week including OT (twice), speech (twice), feeding (twice), and PT. As a result of cCMV, Max has the diagnosis of microcephaly, scattered and diffuse brain calcifications, mega cisterna magna, ventriculomegaly, encephalomalacia, developmental delay, cerebral palsy, bilateral sensory-neural hearing loss, central sleep apnea, and possible epilepsy. 

Max has mastered crawling and is currently working on pulling to stand and taking steps by himself. It is taking him some time to get used to his AFOs. He is still non-verbal, but we are seeing progress in his cognition and hearing. Max is also starting to get the hang of eating soft solids. His main source of nutrition is drinking Pediasure. He works very hard and is so determined to do all the things the medical team said he may never do. He surprises us daily with his strength and resilience. 

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