Today was Ella's six-month review with Early Intervention.
There were seven of us at the meeting, including myself, Ella's service coordinator, her physical therapist, her occupational therapist, her dietician, a developmental therapist and a social worker.
We all sat around the dining room table to discuss Ella's progress over the past six months. Well, progress probably isn't the right word.
It's no secret that Ella hasn't improved. Or even stayed the same. But that's the nature of SMA.
So we discussed what we've been doing and whether or not we want to continue or modify the interventions that have been in place.
After talking with Michael over the past few days, and then discussing further with the team today, we decided that we will be taking physical therapy out of Ella's weekly routine. We will be replacing it with a second day of aqua therapy each week.
Physical therapy is a challenge for Ella, to say the least. There's not a whole lot she can do. It is so difficult for her muscles to compete with gravity. But when she's in the water, she's almost weightless. She can kick, move her arms around, jump on the steps in the water, etc. (all while being supported, of course). And she loves it! So we all agreed that it would be much more beneficial for Ella to have two aqua therapy sessions each week instead of one aqua and one PT (however, the aqua sessions are done with Ella's physical therapist).
Another change we're implementing is to add a session of developmental therapy each week. In this therapy, we will be focusing on Ella's play. The therapist will give us ideas and strategies to make play time as appropriate as possible for Ella and also ways to incorporate Ava and Henry into her play.
Ella will continue to have occupational therapy every week, however, we are going to try to lengthen her time of massage and stretching (currently she tolerates about 15 minutes before becoming bored).
We also discussed some other modifications, pieces of equipment, etc. that she will be needing in the near future:
- An adaptive chair for her to use at the table for meal times, therapy, etc.
- A platform swing to install in the basement
- A ball pit for sensory input
- A Spio (compression garment to provide additional support and sensory input to stimulate her muscles)
- Omega 3, coconut oil and other possible dietary supplements
- A new activity table that we would build with holes cut out for "tubs" of toys, materials, etc. to try to make it easier for Ella to access items independently
While we know that Ella will not improve physically with therapy, our main goal is to help her become as independent in her world as possible.
