With Joel’s strong will and the support of Siskin Children’s Institute, nothing will keep him from doing everything he dreams."
-- Wendy, Joel's Mom
Joel means strong willed. When we found out Joel would be born with Spina Bifida (affecting L4/L5) we were told to start researching, not so we would know all the things that could be wrong, but so that we would be prepared to advocate for the best care and services. We knew that, as parents, we were ready to be his advocate but knew that ultimately Joel’s future depends on his willingness to make things happen. We have advocated for him, but he has also lived up to his name.
In addition to the diagnosis of Spina Bifida, Joel has hydrocephalus, neuromuscular scoliosis, and chiari malformation. He was 3 days old when he had his first surgery and was only 7 days old when he had his second. He has had a total of ten surgeries, most due to shunt failure.
Joel spent 10 days in the NICU and had his first two surgeries before he came home. He had a physical therapist in the NICU, and has had weekly appointments since then. We started with home services and then transitioned to a small pediatric therapy office. Several years ago that office closed and the search for a new physical therapist lead us to Siskin Children’s Institute. Our first appointment was a little overwhelming contrasted to the small private office we had always used. We found ourselves in a big building with more people and more kids. However we quickly learned everyone in the big building wanted the best for Joel. We would not have to advocate alone, everyone from the receptionists and the therapists, to the support staff and CEO, are on our team.
As Joel continues to grow, it is getting harder for his muscles to support him for walking. He relies more and more on his wheelchair to get around, but hasn’t given up on walking. He loves the encouragement from around the building as he practices walking. When Joel was younger physical therapy was easily disguised as play time. It is a little harder to come up with exercise activities for a 12 year old that don’t feel like exercise. His goals revolve around one of his favorite activities – baseball. Right now he is practicing walking the distance around the bases without stopping and his breaks involve pitching and catching.
With Joel’s strong will and the support of Siskin Children’s Institute, nothing will keep him from doing everything he dreams.
-- Wendy, Joel's Mom