Today Ayla had physio. Friday she will have occupational therapy (arms/upper body). We had a little chat with the PT about Ayla after. She is so strong willed that it takes a lot of determination,patience, and stamina for all of us involved. Also, she said that Ayla is so smart. She uses the same intellectual techniques on her as she does most 4 year olds, which is so great, but it's another thing that works against her because she emotionally is still a 2 year old, so it's a battle in her mind.
She can't explain at all what this feels like. It's so rare that they just don't know. She imagines that when she stand on her feet that it feels like that tingly feeling you get when something falls asleep...but constant. That's all she can really think of.
She will stand up straight and take steps with the PT only gently touching her to help her rock back and forth to shift weight, but as soon as we get our hands on her, she slumps forward or back and will not stand up straight for us.
All of her joints are slowly gaining back mobility. Her knees, elbows, hips and worlds better. And her ribs and spine are slowly getting their mobility/flexibility back.
We talked about what she needs emotionally and physically from us. How we have to believe that she can do this and not worry about her falling or being in pain (which they say she isn't, when she cries there are no tears). And even when things are not fun, tell her they are fun (because she knows they are, it's just her way of controlling something in a world where she can control nothing) and encourage her. When we do "fun" things with her, make it short, take a break, then do it again so she can get used to not having to be afraid and that there really is nothing to be afraid of.
It's such and emotional battle for her and for us. Does she really need to sit there and cry from me 24 hours a day, or is she really just trying to control me or see if i still believe that she's so sick she needs me all the time?? Only God knows...but i wish he would tell me.
Anyways, so i left today with lots of thoughts and things to pray about but not quite sure how to pray...
Thanks so much for all thoughts and prayers.
PS today we started decreasing Ayla meds again. This mornign she handled it fine. She could be quite achey for a few days though.
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You're doing awesome! Ayla's stubborn and eventually that is going to work in her favour. When she gets a little older and has a little more understanding about what is going on with her body, she is going to be tenacious enough to overcome her body's limitations.
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