Thursday, January 16, 2014

Maddy's Story

I have a beautiful little girl. Her name is Maddy. She is 3 and a half years old. The time has flown by. It seems like only yesterday we were just bringing her home from the hospital.


She was an angel of a baby, good natured and happy most of the time. She slept through the night at 2 months old. What a miracle.

But by 6 months, things were starting to seem not right. She couldn't quite hold her head up yet. She wasn't able to roll over. She was born an 8 lb baby, but now seemed rather small compared to other 6 month olds. At her 6 month checkup, the doctor confirmed what my mother's intuition had been saying in the back of my mind. Something is not quite right here. Of, course, I had ignored that voice as much as possible. Our family doctor had us go see a pediatrician.

We went to the pediatrician. He sent us to a developmental specialist. And so it began. Over the course of the next several years, we've had tests after test. Maddy has had blood work, MRI's. ABR's, muscle tests, and nerve tests. We've taken Maddy to Gillette Children's as well as the Mayo Clinic. Everything has come back normal so far.

Global Developmental Delay is what they are calling it for now. For those of you that don't know, that simply means "We're not sure what's going on with her." What it means for us is that Maddy has consistently been behind with every milestone in a child's life thus far. She didn't crawl until almost a year. She didn't walk until almost 2 years. She at the age of 3, uses 5 to 7 words consistently. Along with the delays, Maddy has only slept through the night half a dozen times since she turned about a year old.

She gets help from the school in the form of ECE classes, occupational and speech therapy. We have taken her to private OT and speech as well.

While we still don't know if Maddy has a particular disorder or syndrome, she clearly isn't "a typical" child. I am starting this blog because I wanted to share our struggles to get Maddy a diagnosis. Maybe sharing Maddy's story will help us find a diagnosis. Maybe it will help other parents facing similar challenges. Maybe it will help me cope through sharing. Whatever the case may be, I feel Maddy's story must be shared.