Robo Baby

 

She’s more machine now than baby. :)

So this amazing gadget has no mold because they don’t make elbow splints for babies. So Jill made it by  making paper towels cutouts and then cutting the moldable plastic around them and then making hinges from scratch, etc. etc.  It was very involved. Then you add tiny little hook pieces and forty rubber bands and you have a workable elbow splint! Ta da! :) We were given the prescription the last time we were at our orthopedic doctor’s office, but since the process is SO MIND-NUMBINGLY SLOW, our OT still has not received it so she decided to make what she *thought* he wanted. And, yes, that’s how the system works. :)

So we went to see our temporary OT today since Jill is on vacation (which I will allow… I guess… if I have to :)). She is the same OT as at the muscle clinic so I’ll see her when we go to clinic this Wednesday too. She marvelled at the splint made “from scratch” and wanted to take a picture. Then she did some adjustments to it that we’ll try out for two days and then go back to readjust. It’s fun watching Laelie stretch out her arm to get something and then watch the splint spring the arm back up so she can reach for something else. Here’s a video:

 

On the other hand (literally) we have our supination splint. This holds her arm so the thumb goes from pointing down to pointing more out to the side with her palm up. We were told to remember “begging for soup” because “soup”ination can’t happen until you can get your palm up by turning your arm out to hold the bowl of soup. So our supination splint allows that. And when she is using  any muscle you can watch her fight the splint.  Actually besides it being a little harsh on her (turning her hand purple), she is able to bat at toys without going around them to hook them. Now she can hit something directly. Apparently she is missing the muscles to turn  her arms so she is constantly in, hey Linda what’s the opposite of supination?

Um, pronation.

in pronation. (Don’t I sound smart. :))

 

It’s actually triggered something in me emotionally (psychologically?) to see my daughter with her  arm turned the right way. It makes me really happy.  Speaking of feeling good, it’s weird that the closer we get her to looking like my idea of “normal” the better I feel. I was watching a video called  ASL Literature Series: Bird of  a Different Feather where a bird is born into a family of eagles. It shows how the eagle family reacts to this “aberration.” They put the bird in eagle school, they teach him to hunt and fly like them and they even do a surgery on his beak to make him look more like them. The more he represents the appearance of his eagle brothers, the happier his parents are. But he isn’t ever going to look like them. In fact, one day he meets other birds and learns to sing (which upsets his parents). They won’t accept the fact that their baby is different.

I really don’t want to be like that. I want my baby to  enjoy a world I may never be fully apart of. I don’t want her tortured with multiple surgeries to make her look more like my version of  “normal.”  And while I want her to be fully functioning, I don’t want her to feel like she is anything short of beautiful and accepted.

And that was the whole point of the story.    

Leave a Reply