This site is for information, support and questions for any parent of a child missing digits.

Welcome to the wonderful world of being a parent to a child born not whole, but still so very perfect. The life of a child born or with an aquired limb difference is a path that is full of ups and downs.

I am a very fortunate Mom to a son born in 2003 with bilateral symbractydactyly (his right thumb is his only complete digit). He also has clinodactyly of both pinkies. He was diagnosed while I was still pregnant, but that didn't make the journey any more easy.

Friday, June 11, 2010

I did post a long update yesterday, but silly blogger (or me!) it didn't save for some reason. Anyhow, my surgery was bumped yet again. Which, aside from causing frustration with work & the kids, it's fine. I really am not looking forward to having my face worked on again.

Mikey is doing well. He graduates from Kindergarten next Friday!! I am so happy beyond words that my little man is growing up and doing so well! I also spoke with one of his school OT's and she let me know that they've decided to go against using the standardized testing (Peabody) and score Mikey against the kids in his class!! This is HUGE!!! Since day 1 I've never understood how they can use those tests, because he'd be deducted for things like not using proper pincher grasp. I mean come on HE DOESN'T EVEN HAVE the digits required for that, so why do they fail him? It's not like he wasn't doing it because he didn't know how--he physically couldn't. Anyhow FINALLY this year his team agrees and my boy will be tested just like all the other kids. And really, it frustrates me too that (and I do know all the kids are watched/tested but Mikey is a bit more scrutinized) because he has this obvious defect he is constantly tested. I mean really, I know kids who have 10 fingers and still have fine motor delay (helloooo-Liam for one!). I hate the spotlight being on Mikey although don't get me wrong, I am very pleased that he is receiving screening. His OT told me too, that his printing is on par with some of his grade 2 peers!!!!

That's my boy-my hero!!! I have some pictures that I want to share--mostly to help other symby families see how Mikey does things; such as putting butter on his pancakes, twirling spaghetti and such. I have to figure out how to take the pictures off my old cell first!

I hope everyone has a great weekend and I will update next week.

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