i have created this blog primarily for my own therapy, but also to inform my family and friends of adeline's progress, to provide guidance and support for other families coping with craniosynostosis and to raise awareness of the condition.
Thursday, June 23, 2011
Ob-La-Di, Ob-La-Da!
Well, Adeline is now 1 year and 22 days old. She is almost 6 months post-op. And she continues to be amazing.
She isn't walking yet...and why would she? She has a much better view when she is on the ground crawling or being carried around in someone's arms. She practically crawls up the back of my legs, and clings to my calves as I try to get as much as I can done before I pick her up and have to work one-armed. When she is in my arm she studies my every action. She extends her neck over the stove to watch me add the ingredients and stir. She reaches in the pantry and grabs what she can as soon as I open the door.
But she is most destructive when she is on the ground. If something can be dismantled she will find the way (even door knobs and drawer pulls). Cupboards are emptied in minutes. My purse or her diaper bag takes a little longer because she studies everything (most likely to determine if she can put it in her mouth) before she throws it behind her back. She has a gift of detecting when a stairway is not gated. She races toward it and darts up the stairs. I have even witness her strong-arming the gate and pushing it out of the way. She is determined to explore every inch of her world. She gets pretty darn mad when I stop her. I destroy many aspirations with the words "no no!". She hangs her head, her lower lip quivers, and then the waterworks begin. How could I discourage her from following her dreams?!
My house is a mess. And I cannot be more grateful.
She says dada, momma, Jo Jo, tank tu (thank you), oh-oh (A LOT!), what's this? and something that sounds like "Zsa Zsa" all of the time. When I get to Jo Jo's after work and scoop her up in my arms she pushes my head to the side to see if I am wearing earrings. She examines one ear at a time by using her fat little hands to turn my head each way. For months after her surgery she wouldn't let anything touch her head. Now she lets me put obnoxious headbands on her and loves to touch them gently while she wears the "pretty". She loves to have her toenails painted. She hisses and laughs when she sees an animal and meows and hisses at Pete our cat. She chases him until she gets at least one handful of cat hair everyday. It disgusts me. She gets most excited and delighted when she sees my dad.
Nile absolutely adores her. He tries to keep her interest, and takes it personal when she would rather pull wipes out of their container than have a picnic with him. He can't wait until she can play outside with him. Or play games with him. I know it will be just a matter of months before she is driving him crazy.
She eats almost anything. With passion! She didn't want to touch her first birthday cake, so I put a little in her mouth. And then I couldn't get it away from her!
We celebrated her First Birthday with 2 parties: One in Kansas City with the Laake clan and one in Sheldon with my family. Every first birthday is something special - Nile's was one of the proudest moments of my life - but I noticed something extra special while I watched Adeline's family celebrate her first year. I received a few extra hugs, and even witnessed some tears. She is loved.
Her hair has grown over her scar. You can still see it in the sunlight - her hair is very light - but no one notices it. The back of her head is perfect, and the front seems to look better every month. There is still narrowing when you look from the top. But she is in no pain. The only pain she experiences is the daily fall to her knees or bump to her head. She is 10 times more daring than Nile has ever been, and she usually ignores any minor injury she faces. Her mouth is full of teeth working their way through her gums, which seems extremely painful to me. But she's a tough cookie.
The Iowa Registry for Congenital and Inherited Disorders sent a packet asking me to participate in the National Birth Defects Prevention Study. I had mixed emotions when I opened it. I feel a responsibility to raise awareness and support research, of course. But I have been so focused on enjoying our "normal" little girl that I think I try to forget the severity of craniosyostosis.
She's so busy being a 1 year old and I'm so busy being a doting mom that life gives me less time to dwell on it. Thank. God.
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