Exercise station

We have a stainless steel frame. It fits just nice over her mattress during the day time. For now, we use it to hang slings for her legs. It enables her to move her legs more as it is supported against gravity and friction.

I try to lie beside her and do scissors with my leg, hopefully she tries to imitate me. It is good exercise for me too. She does have little little movements. Although limited, It’s good for her to exercise whatever muscles she still has under control.

Also if she is doing fine, we would also try to put her sitting up at a recline angle using a special sitting chair for her. She can continue sitting until we think she is struggling with the secretions. So far she can manage about roughly about 15 minutes in the way shown below.

Her sitting up is another problem as she has difficulty handling/swallowing her secretions if she sits up. Lying down flat is easier for her as her secretion can be drained out of mouth by gravity if she can’t swallow it.

Each day we are learning more about her, especially her visual signs of discomfort or distress. We have been told that these kids have some reserve of their own that is good for few minutes. The signs shown on the equipment could be slightly delayed compared to her visual cues. So it would be good to recognise her discomfort or distress signals so as to promptly address any issue.