Recently K has the habit of putting some things into her mouth again. Why again? Well because as a baby, she already went though the phase of putting her fist, toys, whatever she can get on her hands, into her mouth.
Now she is doing it again, but not fervently, so we are ok with it.
Through these actions she is doing, at least she is trying to move her arm and put the objects near her mouth or knocking it against her nasal mask. part of the mask is made of hard plastic, so it produces a knocking sound when knocked against her toy.
We also give her something to hold and chew on, like apples. She loves the taste of apples. We place it at the tip of her mouth to get her to lick the apple slice. If she can reach it with her teeth, she will chew at it.
She will fuss if we take it away. We need to tell her that the apple turned brown already (oxidized), not so good for you. Then she would willingly give the apple in her hand to you.
As much movement for her is always good. It gives her a chance for development, or limit the rate of atrophy. Her speech will definitely be impeded. All these movement of the jaw, tongue and throat do require much much much more effort for SMA patients.
We do have a glimmer of hope that she can put some words together in future. She don’t or can’t say mama or papa, but she can do a “hot dog” (too much Mickey Mouse clubhouse :p) or a tiger roar, if her mood is good.