Saturday, February 19, 2011

Hi! Been a few weeks since I have posted anything about Cole. We have finally began to live in our home again. Erin spent the night with us Thursday and Friday nights and Cole and Cale came over Saturday morning. They stayed until we took them home for Cole's birthday party.

His Nana and Papaw, Aunt Dana, Mema and Grandaddy Thomas were there as well as Brandi and Chris and their friends the Skinners.

The Skinners have two small children, Alyssa and Caleb. When they arrive Cole began to holler Caleb, Caleb. Caleb must be around 2. Alyssa 3 or 4. They all played well together on the swings. Cole fell out of the swing a couple of times, but jumped right up. Cale ran into the swing a couple of times.

Cole and Cale both seem to interact well with other children. They were both tired from playing hard all morning and no nap. I wondered how well they would do. They were pretty good. After the cake cutting and eating the kids began to play again.

Cole brought me two balloon that were tied together. He said "apart, Pappy, apart". It took me a second to realize what he was saying, then he separated them at the knot and handed them to me. Upon untying them I gave back to him. He immediately turned and gave one to Alyssa. Saying, " here lyssa, here". He really amazes me sometimes with his willingness to share things when he has more than one. With only one though he does become a little selfish.

After opening his presents, he showed his Nana, Papaw and me his new "Thomas DVDs" and the for Thomas books. Then he gave each of us a book. Sharing again.

He then sat for several minutes and identified all the trains in the books for Nana and me. Then he read for me, in jibberish, each page in the little books before pronouncing the end.

Cole's vocabulary continues to grow. He still does not readily name colors and has to be prompted to do any counting. But he recognizes more animals by name and sound. He uses more and more words in sentences.

I got tickled at him when he was showing me his DVDs and books. Their was one box with DVDs and 4 little books about 3x5. He did something just like I would do. He could not hold all of them at one time and show them to me. So he put the DVD box between his knees then attempted to hold up the 4 books. The DVDs fell to the ground from between his knees each of the 3 times he tried it. Then he picked up the DVD box and slammed on the coffee table and proceded to show me the books. Just seemed like something my impatience would have me do.

Backing up to the morning. When Cale and Cole arrived Cole's first request was for "COKE". Followed immediately by Cale saying "COKE". So I guess I have addicted both of them for life to Co-Cola for breakfast. I know that Brandi could shoot me.

Cole did get upset when I tried to get him to use his fork at breakfast. He told me "I don't want it". Then handed it to me. I put back on the table and he immediately handed back saying " I don't want it". Didn't force the issue. He was doing so well with everything else. He can display a little temper at times and I could see it coming.

Then I heard the backdoor open and then Cole gave out a holler, GamMa(not sure about the spelling). It was my Mom. Cole has not mastered Grandma yet, but Mama melts at the sound of Cole saying GamMa. Both he and Cale ran to her and gave her hugs and kisses. These are such loving children. Erin held back because she is so grown up at almost 7, but she finally gave hugs and kisses.

We went back outside and I got Cole to pedal the "big wheel" a little, but he still ends up pushing it along with his feet on the ground. I do think he was getting the idea of how it works though. Cale is so short he can't touch the pedals yet.

Then the sweetest momemt of the morning came. Marcia was sitting on the edge of the cedar chest, which is the only peice of furniture not to make it off the carport and into the house. It contains all the things that belong and remind us of our son Jay.
It is to heavy for us to move without unpacking. I don't think either Marcia or I want to go down that emotional road just yet. But to the moment.

As Marcia was sitting on the cedar chest Cole climbed on to it and then stood behind Marica and hugged her kneck from behind. The he said, "Granny, scatch your back". Marcia said " Please do". Cole sat with his legs stradle the chest and scratch Marcia's back for a minute or so. Then he said, "feel good, Granny" and hugged her again.

Moments like these might be taken for granted in a five year old if not for Cole's FX. The FX chromosone limits production of a protien which allows connections between sections of the brain to grow. Literally parts of his brain cannot communicate to other parts. So every little word or act of cognition and recognition are little triumphs.

Cole's FX is mild and he continues to learn. He is a great little problem solver. He does not let anything slow him down for sure. We are so greatful for that.

I am the member of Fragile X group on Facebook. Very seldom do I post anything there, but I read the posts of other Fragile X moms and dads and I assume a few grandparents like myself. Sometimes it makes me sad as I read of the struggles of some families, but then some one posts a minor or major moment of progress and hope springs eternal again. I appreciate the honesty that all those in that group have in putting out their failings, successes, tragedies and triumphs.

For anyone reading this I hope you will at least remember these families and children in your prayers and if you can please support FRAXA at as they search for treatments and cures for Fragile X Syndrome.

Thanks again.

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