Our son Shane was born early, at 31 weeks, for reasons unknown. He was born with a congenital diaphragmatic hernia and had a very successful laparoscopic repair at 5 days old. Shane spent 6 weeks in the NICU and during one of his many scans and tests, it was discovered he had experienced a brain bleed. We didn’t even know babies could have strokes. The doctor also discovered that the sutures in Shane’s skull had closed too early and he underwent another successful surgery at 6 months to repair this.
When he was two months old, Shane started receiving physical therapy (PT) and occupational therapy (OT) services from our state’s early intervention Birth to Three program. These programs are available in every state. Shane often kept his right hand in a fist and didn’t use it very much. He also walked with a limp and dragged his right foot. The therapists helped him learn how to use his hand and how to pick up his toes when walking.
Shane is now 7 years old. He wears a right hinged AFO (ankle foot orthosis) during the day and a solid AFO at night. He receives OT and PT services at school twice a week. He will receive his 1st round of Botox injections very soon and we are hopeful that these will relax the extreme muscle tone he has in his ankle.
Shane he just recently achieved his person goal of pedaling a bike! He’s wise beyond his years and his smile will melt your heart. He loves everything Star Wars and adores his two younger brothers. Shane is a wonderful son and we’re very proud of him!
Those first years were a very tough time for us as parents. Watching Shane and how hard he tried got us through it. When Shane was diagnosed, we felt so alone and so unprepared. We discovered CHASA when searching for options for shoes that would fit AFOs. We found the CHASA Shoe Exchange group. CHASA has let us know that other families are going through this and it’s given us a sense of “we are not alone in this.” Thank you!
Shane’s mom
Join CHASA Hemiplegia Parent Groups – CHASA has Facebook groups and a more private Hemi-Kids Listserv Email group
