I was thrilled to read how many children with hypotonia responded so well to PT and OT to the point they were discharged from therapy in the related thread. I wanted to share our experience, though, because I wish I had known this before being discharged from therapy.
My son could not lift his hands to midline and laid plastered on the ground. He had FTT and myriad eating problems. He started OT at 3.5 months adjusted, picked up PT, and I worked assiduously with him at home. He is a very determined little guy, and ended up walking at the equivalent of 12.5 months. PT discharged us.
During some EI meeting, maybe a year later, I requested that he be evaluated for PT again because he slumped while sitting. On re-evaluation, he tested as far more delayed percentage-wise than initially. He hadn't met new developmental expectations. The evaluating PT said it is not uncommon for these children to require PT to meet each new developmental stage.
I wish I had known that. I would have had him re-evaluated every 4 months, 6 months, or so, so that we could make sure he was meeting new developmental expectations.
The strides these kids can make are wonderful, but I wish I had known that not all of these kids can continue to make progress on their own.