The Little Voice that Wouldnt Go Away

Gracie rode her bike and I walked with the dog 3 miles today. It took us an hour. She did very well - I only had to haul her little dupa up the last hill. Otherwise she did it on her own.

We had a PT a few years back who told us - very self importantly - that Gracie would take a very long time to learn to ride a two-wheeler without training wheels. She'd be at least 7 or 8 years old. Well, Gracie learned to ride when she was 5 (now she is 6) after an all-afternoon session with her brother. And that was a year earlier than either of the other two. So go figure.

A little voice started whispering to me that something wasnt exactly right with Gracie when she was a newborn. My other two never gagged when nursing but Gracie did frequently. I knew my other kids did not cry when I put their shirts on - particularly the left sleeve. Or when I washed their arms while giving them a bath.

The voice got a little more demanding when Gracie hit the four-month mark.The other two turned over at 4 months as scheduled. Gracie just went perpendicular, cried very hard and rolled back. Gagging was the order of the day when I fed her solids.

That little voice was nagging away but I wouldnt listen. Then one day - she was just five months - I walked into the front room to see her playing in her play seat with her open right hand grabbing at the hanging toys and her left hand fisted and hitting against them. I instantaneously saw my cousin, Chuckie-boy, in my mind's eye. He had severe cerebral palsy and that hand looked like his. I immediately called my pediatrician and spoke to her about it. She pooh-poohed it but made an appt for the next day.

Nursemaid's Elbow - yep, that was the initial diagnosis. Her Pediatrician, with the shiny plaque stating she had done special training in CP, diagnosed nursemaid's elbow and sent us for xrays. The emergency doc also proposed nursemaid's elbow. Just to make sure it was handled correctly, she sent us to an orthopedic friend who, in turn, both diagnosed nursemaid's elbow and routed us to another doctor in the practice who worked with infants.

Dr. SexistPig Egyptian was the next guy we saw. He treated me like I wasnt even in the room so I didnt like him (of course). After doing some tests with her - like holding her and placing her feet down on the table to see what she does - he made the pronouncement that she has had this since she was born and there appears to be some sort of brain damage. But the extent of it and what it is, he cannot tell us. We would need to see a neurologist. I was floored - and I didnt believe him because I didnt like him. He did put her in a Pavlak Harness 20 hours a day - that was absolutely horrible.

Off we go to another pediatrician who tells us, erroneously, that she couldnt open and close her hand if she had brain damage. (And he did not appreciate it when I came back later to enlighten him.) Then to the Egyptian-recommended neurologist. I couldnt stand him - and only because I couldnt handle what he was telling me.

Putting our ducks (I mean docs) in a row. We swung into action.A SIL's brother recommended an orothopedic doc (Dr Sarwack) to see at Childrens Memorial Hospital. (He took her out of the harness immediately!) My BIL's wife, at the time a microbiologist, found us a neurologist at U of C - Dr Schorr (She is just the BEST.) I called around and got Gracie in line for Physical and Occupational Therapy to begin once we had seen the docs.

From that point on it was always the same - no matter who we saw. We dont know the extant of the damage. We dont know if she'll walk. Talk? Dont know. Cognitive abilities? Again,dont know. Can only wait and see.

Most of our family immediately formed a supportive network for us. There was one unbelievable incident with a family member who shall go un-named but suffice it to say some things can be forgiven but can never be forgotten. Even if that person is absolutely clueless.

So what happened to Gracie? Well, no one knows. The MRI showed a stroke in the part of the brain that controls the left side of her body. Even I could see the "hole" in her brain where the stroke killed off the brain cells. No one can tell us when it happened but we did find out it was either right before, during or right after her birth. Since she was stuck transverse over the delivery and took forever to actually make her appearance (I can still hear the delivering doctor's giddy laughter of relief after finding out she was okay), I feel it happened right before she was born. But that is something we will never know.

Gracie is a very lucky girl. She was not affected cognitively by the stroke. She is tight but can do everything someone her age can do though not always as well. In some cases, she can do even better. She is an outgoing, very social girl with a delightful personality (yeah, yeah. I know. I'm her mother. What do you expect?).

We all were lucky!