Remarkable Reasons

You can find resources throughout his story and at the end of this page which we hope are helpful. Visit again and learn about what happens in Grayson’s life. In our Reality Check’s we share the story, pictures, and videos we make together with out beneficiary’s. Here is an introduction written by his mother about his origin story, we hope you enjoy it:

“Born extremely premature at 26 weeks gestation and clinging to life, Grayson proved himself to be a fighter. He was born in respiratory failure with low Apgar scores. He had a difficult airway resulting in 5 attempts of intubation over the first twenty minutes of life. He required mechanical ventilation for six weeks before being weaned to Bi-Pap for a few months followed by supplemental oxygen until 6 months of age.

In his first four months of life, he faced a several medical challenges including, severe drug withdrawal, Bilateral Grade 2 Intraventricular Hemorrhage, Leukemoid Reaction of a Newborn, Nasogastric Tube for over two months until he could start bottle feeding, Apnea, Bradycardia, Petechiae, Anemia requiring multiple Blood Transfusions, Bilateral Inguinal Hernia requiring surgical repair, Necrotizing Enterocolitis, Bilateral Retinopathy of Prematurity, Bronchopulmonary Dysplasia, Hyperbilirubinemia, Torticollis, Limited Hip Abduction, Global Developmental Delay, Patent Foramen Ovale, Adrenal Suppression, Acquired Positional Plagiocephaly, and Brachycephaly.

At 4 months of age, he was able to go home on supplemental oxygen to his foster family, who would ultimately become his forever family.  He required 4-hour round trip visits to the pediatric hospital to follow up with multiple specialists. 

When Grayson was 5 months old, he was approved for Early Intervention services where he received mostly virtual Physical, Occupational, Speech/Feeding, and Developmental therapies. 

2022 was a difficult year for Grayson. Early in the year, his pediatric Ophthalmologist diagnosed him with Bilateral Strabismus, Bilateral Upper Lid Ptosis, Alternating Esophoria, and Myopia. Throughout 2022 he required many visits to his pediatrician. Grayson was hospitalized three times for common viruses that caused respiratory symptoms, increased his work of breathing, and necessitated additional medications, supplemental oxygen, and breathing treatments. 

During the third hospital admission in September 2022 due to Respiratory Syncytial Virus and pneumonia, his condition rapidly deteriorated to respiratory distress and the local hospital pediatric unit could not provide the level of treatment necessary. A chest x-ray indicated that Grayson’s lung had partially collapsed, and he was transported by helicopter to the children’s hospital affiliated with his specialists and admitted to their Pediatric Intensive Care Unit.  During this hospital stay, Grayson contracted Covid (for the second time in six weeks) and was in the hospital for a total of 11 days. Grayson and his biological brother were scheduled to be adopted two days after he was admitted to the PICU, and the judge allowed the hearing to occur virtually, and the boys were adopted in Grayson’s PICU room. 

After being discharged from the hospital, Grayson continued to get sick with ear infections, a second bout of RSV in November 2022, and daily fevers.  Grayson was referred to additional specialists who were able to diagnose a NK (natural killer) cell deficiency. 

In April 2023, Grayson’s care was transferred to Johns Hopkins All Children’s Hospital (JHACH) in St. Petersburg where it feels like all the pediatric specialists have genuinely cared about getting answers for Grayson’s medical issues and needs. In less than a year, JHACH specialists and therapists, have performed more diagnostic testing than the out of state hospital performed in two years.  They have been able to confirm or rule out suspected conditions, provide corrective surgery for his severe Strabismus, and identify and aid in getting Grayson the referrals and resources necessary to become the best version of himself. 

JHACH specialists and therapists have treated the impacts of the conditions listed above and have thus far diagnosed Grayson with Dysphasia (requiring his liquids to be thickened until he was able to pass a Swallow Study), severe Mixed Receptive Expressive Language Disorder, Spastic Diplegia Cerebral Palsy, Autism Spectrum Disorder with accompanying language impairment requiring substantial support (level 2), Fetal Alcohol Syndrome, and Ankyloglossia (a tongue tie which is scheduled for surgery in 2024).  

In addition to seeing a number of pediatric specialists at JHACH in St. Petersburg, Grayson has been seen in their AAC Clinic to trial a communication device, as well as their Equipment Clinic. He receives in-clinic Physical, Occupational, Speech, and Feeding Therapy at JHACH Outpatient Care, East Lake. Grayson has four very caring and compassionate therapists that have helped Grayson make significant improvements in a short time span. The therapy, specialty clinic, and laboratory staff at the East Lake location have created a safe, welcoming environment for Grayson to thrive.”

– Grayson’s Mother

You don’t have to have a super power to be a super hero, Grayson is living proof of this fact. We’d like to thank Grayson’s mom for sharing his origin story and allowing us to be invited into his life. He has survived an incredible ordeal we all can be inspired by. Remarkable Reasons looks forward to helping as many kid as we can.