Monday, October 4, 2010

Reflections on the First Year

August 25th marked Adele's first birthday. Her celebration actually took place a few days before, with all the family gathering at Aunt Theresa and Uncle Paul's house. Everyone passed the babies around, including a few new newer and newest ones! Mommy wrote "Happy Birthday First Birthday Adele" in Braille using mini M&M's under the writing for the sighted folks already on the cake. A special cupcake was ready for Adele, who doesn't like to get her hands messy; after all, who likes to goo up their eyes, which is how Adele uses her hands: too"see"!!  But with Mommy's help tasting the icing, she was a little more interested!  Her best fun was after everyone sang "Happy Birthday"......one of her current tricks is to clap her hands when she hears, "Yay!!"... so when everyone yelled "Yay!!", she clapped her hands.....so, everyone yelled "Yay!!" again,,so she clapped her hands....so again the crowd yelled!!!! This was a powerful moment for her, controlling us all like that, and we laughed and laughed at her obvious delight!
Adele's first surgery took place just a few weeks before her birthday and has changed her appearance dramatically. She is on her second set of conformers in the eye sockets since the orbital implants. One of the current battles is to keep the right conformer in place. We are pretty certain she is right handed, as that conformer is her favorite to remove. Usually, when she is in bed and winding down for sleep, she travels around and up and down in her crib. Then at some point, PING, she pops out that right conformer! In networking with other families of anophthalmic children, apparently this is a common thing.  After all, they are non-functioning, and a baby and young child cannot yet understand the importance of leaving them in place to allow for growth. So, often several times a day, we wet the conformer with contact solution and put it back in!! We have read that anophthalmic adults and older teens chose to removed their eyes when not out in public or when swimming etc., as they can be itchy and uncomfortable, kind of like a tight shoe or a necklace or bracelet.
Adele is coming along on her Orientation and Mobility. With the great help and instruction of Anna at CABVI, we are all learning how  to stimulate her to move, and she DOES!!! Mamma designed a sensory "room" and a friend's husband built it for her. It is wonderful, for Adele and for her brothers! She stands, moves around in it, and listens to her voice echoing. We have caught her "clicking", and wonder if she is doing some echolocation practice!!
And so on we go!!!! Every child's life is an adventure, and Adele's is certainly no exception!!
We are planning now for her next benefit, and hope to make this fun gathering an annual event!

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