Monday, June 9, 2008

Not just milestones- Historical Markers

If you've read my previous blog, you will know that Katy was diagnosed with PKU at the age of thirteen months.  By then, she was having six seizures a day.  The hope for her future was very grim.  But I am a firm believer in miracles, and I understand that God made me her mom for a very good reason.  Katy was given a 95% chance of severe brain damage.  She was diagnosed (among many things) with West Syndrome.  Most children who suffer from this condition learn to hold their bottles at five years of age, and some dont even learn to walk or talk.

I decided that one way or another, I would get my daughter back- the way she was handed to me- healthy and whole.  Wether it would be through an unexplainable, supernatural miracle, or through hard work to aide the neuroplastic process,  I would have my miracle.  I would fight.

But, like anything that is worth sweating, crying and bleeding over- a result has started to yield. Katy is making a comeback, and deep down, I knew she would.

I've just returned from Carls Jr.- a fast food restaurant. Inside, they have a little play center for children. Time after time, I have taken Katy there with the hope that she would catch on and play. At first, she would just stand there in a fright. She didn't get it. Children zipped past her, shouting and screaming in glee. She didnt even bother to look at them. All she ever did was stand still- waiting to be rescued from this strange place. After much coaching and insisting, she finally sat on the little floor and banged on it. I would get inside the toy and try to teach her to go up and down the slide. I guided her arms and legs through the toy, and she almost enjoyed it. As long as I moved her body through it. This went on for months and moths.

Today we revisited the place.

Katy took to the game almost immediately. She fluttered up the little steps and scooted all the way down the slide. Once, twice, three times- who knows- she kept going and going for half an hour. The children were no longer zipping by, she was keeping right up with them. Every now and then, she would stop a child and turn him to her face. It was almost as if she was saying

"wait a second... how come you're short like me?"

And to think that not even a month ago I was told by a psychologist that Katy could not engage in social play. This day marks a new era in Katy's life. It says to the world:


And now she is saying her first word.  Here is the video:

Wednesday, June 4, 2008

Going Lo-Pro

We introduced the Aproten ditalini to our almost 11-month-old son, and he LOVED it! We made it with the Cambrooke Shake N' Cheese, and it turned out great. Tasted just like the "real" mac n cheese. He also got to try out the Cambrooke butterscotch cookies at the Walk for PKU Research in Cincinnati last weekend, and those were a hit! He's also liking broccoli and bananas.