For the last year, I've realized that part-time wheelchair use meets Balthazar's needs. I've asked at the last two developmental pediatrician appointments. Each time I was told no. Now that we know the boys have a congenital myopathy, a wheelchair is appropriate. I didn't have to fight, or justify how we would use it. I already knew exactly what to say, having had so many months to prepare. It was seamless. It was the longest developmental pediatrician appointment ever.
After the clinic appointment with the pediatrician, nurse practitioner, dietician, nurse, occupational therapist, and physical therapist, we took our referral to the social worker. There we picked out our durable medical equipment provider, or DME. We selected the same DME we use for other supplies. Then we went to the mobility department in the occupational therapy room. We made the appointment to have Balthazar fitted for his custom chair, while they found a loaner chair for him. The day was running so long that I had to leave to pick up Caspar from parish nursery school and take Balthazar to occupational therapy. I went back the following day (after a lovely evening with a friend and like-minded mother,) to pick up the wheelchair.
Balthazar took to it naturally. He was steering instantly. He could break, turn and reverse without instruction. The only suggestion he needed was to use the metal instead of the tire for a handhold. We gave him the chance to wheel up and down corridors. We was able to engage others in conversation instead of falling and struggling. His outgoing personality could shine instead of being drained by physical exertion. We made time for a museum trip. I had to restrain him from going to fast, but otherwise it was a delight. He could keep up with us in the chair. He could actually look at the art. Instead of being frustrated and drained myself, I could experience the joy of the afternoon. A part-time wheelchair is a long-overdue delight in our lives.
Wednesday, September 4, 2013
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