Holden was born in March of 2015. He is a handsome little boy with multiple severe impairments; commonly abbreviated as SXI. He tends to fall outside of the box and is constantly leaving us on our toes. A lot of times he doesn’t make logical medical sense (to us and to his own physicians). His symptoms range from mild to severe and are pretty unpredictable. He is unable to sit or stand by himself, is wheelchair bound and requires one on one care for everything. He babbles but cannot speak words. He is able to express pleasure by smiling, babbling, laughing and moving excitedly. And he is able to express displeasure by screaming, crying and arching his back. He’s also very good at snuggling. Holden enjoys swinging in his swing or hammock, going for walks, riding in cars or on the bus and being tickled.
Medical Diagnoses:
-GRIN2A Genetic Variant
-Mitochondrial Disease, deficiencies in complexes one and three
-Retractable Epilepsy
infantile spasms
startle response head drops
focal seizures
atypical absence seizures
-Epileptic Encephalapothy
-Cerebral Palsy
-Dyskinesia
-Hypothalamic Storming
Tachycadia
Fevers
Dystonia
Insomnia
-Cortical Visual Impairment (legally blind)
-Dysphagia- requires thickened liquids (honey consistency) and pureed foods.
-Reflux
-Hypotonia
-Constipation (we believe it is dysmotility, not true constipation)
-Generalized Muscle Weakness
-Global Developmental Delays
-Cognitive Impairment
-Spasticity
-Severe expressive and receptive speech impairment
-Sleep apnea
Surgeries And Procedures:
-Multiple MRI’s with sedation
-Bilateral ear tubes
-Gastroscopy with impedance study
-G-tube placement
-Vagus nerve stimulator implantation
-Muscle biopsy
Holden has a team of 11 specialists which include: his pediatrician, hospice physician and team, four neurologists (for sleep, epilepsy, mitochondrial disease, and genetics), gastroenterologist, ophthalmologist, cardiologist, ENT, PMR and a surgeon as needed.
Holden qualifies for a hospice program because of his mitochondrial disease diagnosis as well as the severity and unpredictability of his symptoms.