Tuesday, June 7, 2011

It has been a few weeks since my last entry to this ongoing story of Cole and his progress with Fragile X. Cole's communication skills continue to grow. He is using more and more sentences. I won't try to list them all but some are worth mentioning.

His most used phrase this weekend was, "Jim, come here". He goes between calling me Pappy and using Jim. But I guess the one that somewhat amazed me was when my Mom called. Cole had woke from his nap and crawled in my lap with his pillow and nodded off again. The phone rang and it woke him a little. It was Mama. Cole heard me talking and wanted the phone. I told Mama Cole wanted to speak to her. I handed it to him, not telling him who it was. I could hear Mama say, Hi, Cole. Then Cole replied," Hey, Gramma. What are you doing." That was about all as he slip back into his coma sleep.But he recognized Mama's voice who he had not seen in a month and over the phone no less, then used her name and ask a question. This is a big leap.

If you have read past posts you know that he loves Thomas the Tank Engine and all the accompanying characters. Well Cole is slowly mastering the colors of each engine. I know that it is not that he recognizes the colors but he is memorizing what color goes with what engine.

He spent 30 minutes with Marcia where she would ask him what color each engine was and he would answer. Sometimes correctly, sometimes not. Then he brought his book and sat in my lap. He began to ask me, "what color Thomas?" I would answer appropriately, blue. He went through the entire cast. Percy, Gordon, Emily, Henry, James, Edward, Toby and on. I would answer the color and he would repeat it. Then he began again.
What color is Thomas? I answer I don't know. He replied Thomas is Blue and we went through the entire cast again doing this. He got all but one or two right. He was proud of himself. He gave me that little look what I can do pose.

He is putting his clothes on without help. Gets them inside out and backwards but gets them on along with his shoes. His shoes which he sheds almost as soon as he puts them on.

We filled the blowup pool and in they went. He dives in and holds his breath(and I hold mine till he comes up)and tries to paddle around and then climbs out and dives in again. He loves the water. He also loves to splash anyone who get close enough.

I am changing speeds here for a while. Below you will find a link to "team up for a cure". This link will tell you about a golf outing Cole's dad, Chris and Chris's friend, Charlie Cosey, are organizing. Charlie's son is 2 and has been diagnosed with Fragile X. These two Dads are trying to make a difference in the lives of their sons.
The golf tournament will benefit FRAXA.

FRAXA is an organization that sponsors research for cures and treatments of Fragile X. You will not see TV adds or Internet adds seeking donations for FRAXA. Most all of FRAXA's funding comes from the efforts of family and friends of Fragile X children. Flea Markets, yard sales, bake sales, basketball tournaments and golf outings are organized by parents, Aunts, Uncles and Grandparents. As far as I know there has never been an event in South Georgia to benefit FRAXA directly. So we are hoping for a lot of support from our communities.

This is the link to the golf outing. You can copy and paste into your browser.


Please take a look at the link and if you can get a group of golfers or wannabe golfers together to play please do. If you can only volunteer to help please do that.
You can make a donation directly from the site. No amount is to small.

FRAXA is on the verge of breakthroughs in treatments and possible cures. Please vist their website, fraxa.org.

Fragile X affects 1 in every 4000 boys born in the US and is a leading cause of autism. Believe me when I say it can affect you and your family. Thanks for any consideration you can give to this golf event and to FRAXA.

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