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.
I certainly hope that by doing this blog you will find someone who can come up with answers. And, my heart goes out to all of you as you continue your search. My thoughts and prayers are with you.
ReplyDeleteA brave and beautiful step, Erica. The writing will help you most assuredly and the connections, well, there's no telling where God will take this strand. Praying for wisdom and patience for all of you.
ReplyDeleteThank you both for your kind words and prayers.
ReplyDeleteHave you tried genome mapping? I saw this story on a tv show a couple years ago. Here is an article: http://www.npr.org/blogs/health/2011/06/18/137204964/genome-maps-solve-medical-mystery-for-calif-twins
ReplyDeleteI'm not saying this may be her issue, only that maybe genome mapping can help provide an answer.
Thanks for sharing that. We will have to look into that one. Maddy hasn't had an EEG yet, so I think we will be going that route next, but it's nice to have other testing ideas.
DeleteNice to meet you and a Maddy xx
ReplyDeleteHi Erica (and Maddy!). I'm a fellow blogger and reader of Love That Max, which led me to you. Maddy sounds a lot like my daughter. She also was the most perfect baby and now at 20 months cannot crawl, walk or talk. Like you, our only diagnosis so far is GDD. We are still in the middle of testing. I will keep checking back and wish you lots of little triumphs in the months to come. (PS - you can find more about us at http://cadence-undiagnosed.blogspot.co.uk/)
ReplyDeleteIt must be incredibly frustrating to not have a specific diagnosis. Maddy sure is a cutie! I hope you find writing/blogging about your experiences as helpful as I have! (Visiting from Love That Max LinkUp!)
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