Friday, October 28, 2011

THURSDAY, who knew?

Who knew that the Thursday would turn out to be so great. The word much more than the day of the week.

Brandi posted this on her facebook page.

"As I'm sitting in line at Cole and Erin's school waiting for them to be let out when I spotted one of Cole's teachers bringing him to me early, probably so her arm wouldn't go limp today trying to hold on to him. Before he reaches the van he says "Hello". I open the door and he says "Hello, How are you?" I look forward to hearing those words everyday. After he got into the van his teacher ask him what today is. He holds his head down with the biggest grin on his face while his arms are going 90 to nothing and says "Thursday "! Can't explain the excitement going through my body. Then she asked him what day is tomorrow. She said "today is Thursday and tomorrow is".......and he said Friday! How awesome is that! He has only been in school for about 2 1/2 months and has learned so much. Couldn't be more proud of my Cole-man! :)"

How could just the words Thursday and Friday be so powerful in the life of a young mother and her young son? The answer is simple if you know what Fragile X Syndrome is. The emotions stirred are only understandable when you have seen the range of effects FXS has on the children and adults that have FXS.

Putting two days together and answering the questions correctly by this little 5 1/2 year old boy is a milestone to be remembered like a 18 month old uttering "mamma" for the first time. Cole has come so far from where he was just year ago. It gives us hope as to how far he may go.

Cole, Cale and Erin are loading up as I type to see their favorite character in person. Thomas the Tank engine at Veterans State Park in Cordele.

Cole loves Thomas, Erin did also when she was 3 and 4. Cale watches Thomas and seems to be more interested lately, but he is more of a Toy Story fan.

Erin knew the 4 or 5 DVDs we had by heart by age 3. You could turn the sound down and she could repeat every word of everyone. She would sing along with the captions.

Cole knew the DVDs by heart at that age as well even though he did not repeat the words. He would be playing with a toy while the DVD played. Just before their was a crash he would turn to the TV then say "uh oh", then turn and play with his toy again. The same when a song was sung on the DVD. Cole would jump up just before the song began, stand in front of the TV and wave his arms and dance to the tune in perfect rythym.

Cale will stop and dance and even sing a few words but he is just not as enamored with Thomas as Cole and Erin. That may change. We will have to wait and see. He is making great progress with his speech and vocabulary. He seems to have a broader
range of interests than Cole.

The only other thing to report is Cole pooped in the potty. While in his swing last week, he told me he wanted down. His words were, "want down Pappy. Have to stink".

I unbuckled him, he jumped down, ran inside, pulled his pants down, sat on the potty and pooped. Marcia had to help with the clean up. He pulled his pants and came back out to the swing where I was with Cale. Marcia came out and announce what had occurred. I told Cole-man good job and as usual he clapped and gave a big smile then told me to push him in the swing. Marcia called Brandi to tell her the news. She was as excited and proud as we were if not more so.

This is the strangeness of FXS. Don't know that he has done it again. Prior to this time he would go to the potty if you ask him, but would not do anything other than pull off the TP and flush the toliet. But at least you know he knows how and we can hope he will decide to make it a regular habit.

I will let yall know how the Train ride went when I get a report.

I wouldlike to thank again everyone who participated, donated or attended the "team up for a cure" golf tournment.

Prayers, Pennies and Perseverance will one day provide a cure, please support research at

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