On Tuesday, Ella had her first occupational therapy session.
I was going into it with mixed emotions. We've had such an incredible experience so far with Early Intervention, and we absolutely adore Ella's PT, so I was thinking that there's no way we could be so lucky to get two outstanding therapists.
I was wrong.
Ella's OT, Aditi, is so knowledgeable about neuromuscular diseases. She is so caring and compassionate with Ella. We felt very comfortable with her from the moment she walked in our front door.
Aditi was very impressed, and somewhat surprised, with how strong Ella is. She said she was expecting her to have a lot less function than she did. Of course, we were encouraged by that :)
She explained to us about Ella's lack of "sensory" input from her muscles. Ella can feel anything and everything that touches her, however, because of her disease, she is unaware of her body position without seeing it. She said that if we close our eyes, we know our body position, but if Ella closes her eyes, she doesn't. She needs to see to believe.
Since Ella's motor neurons are dying, our job right now is to stimulate the ones she has as much as we possibly can. This means we need to get her weight bearing in her legs. We're to have her "bench sit" and practice reaching for things in this position, so that she can feel the effect of her weight going through her legs to the floor. We also need to massage her daily, to keep those sensory nerves stimulated.
We also mentioned Ella's "charging" to Aditi. This is when she sucks on her two fingers and uses her other hand to touch something "alive" (another person, the dog, or herself if no one is within "charging" distance). Aditi said this is Ella's way of getting that sensory stimulation by herself. She's craving it. In a sense, she really is "charging" herself.
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| Charging at Target |
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| Charging on Ava |
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| Charging on Daddy |
In the near future Ella will begin Aqua Therapy (with her current physical therapist) as well as have an evaluation by a nutritionist to make sure she's getting everything she needs, since she hasn't been gaining as much weight as she should be.
We're so grateful for the knowledge and compassion of Ella's EI (Early Intervention) therapists. We finally feel like we're really doing something for her since she's started working with them :)
