Sunday, April 8, 2012
I started this post last week. I was so proud of Cole for his persistence. I was so taken by his sense of pride in his accomplishment. I got sidetrack and did not get back to it.
Then we really got sidetrack onto the main line of the Fragile Xpress. Cole-Man suffered his first siezure and then had several episodes. We had hoped this would not come but it did.
And as bad as it is there always seems to be things in place. Brandi was at her Mima's with the kids when the seizure struck. His eyes glazed over and he became unresponsive. Fortunately Brandi could throw him in the van and leave Erin and Cale with Mima and her Aunt Carole. She called 911 and they met halfway to town and Cole-Man was transferred to the ambulance and to the emergency room.
There he was stabilized and prepared for transport to Macon. Then Macon call and they were full so the sent him to Scottish Rites in Atlanta. There waited an attending physician who was an expert in the field of Fragile. I can't remember how to spell his name but he made the first diagnosis of FX in the State of Michigan some 15 years ago we were told. It was our good fortune Macon turned us away.
Cole is off the ventilator and breathing on his own. His vital signs are good, his EEG was good. He is still groggy but is talking.
The last few days have brought many prayers and thoughts from friends and strangers from near and far. I truly believe that the silent prayers offered by others are the greatest of gifts. Thank you all. The unfinished post of last week follows.
"Cole wants to do it" he told me, so I gave him the remote to the DVD/TV. Cole has long been able to load the DVD and play his beloved Thomas episodes. But the remote has been off limits because he would randomly press the buttons causing the need for the "adult" in the room to correct the situation.
But Friday morning I just gave him the remote and the DVD he is enamored by. It has four stories and you can choose continuous play or select them individually. Hereto fore Cole would continously press the button that played the first selection. The DVD demanded that you move a yellow ball next to the story you wanted to play.
I left it with Cole and low and behold by eleven o'clock he had it figured out. He could move the selector through the menu of Continous Play, Select Story, Games and Language to the Select Story option. Then move the selection icon, a yellow dot, through the four story lines, games and return to menu options. He was selecting the story he wanted to watch. Then he would put the remote on the end table until time to select again.
Not only that he has learned to turn the volume up and down and truly realizes what it to loud. Pronouncing, "to loud Pappy, turn it down".
But it was the look he gave me with his head tilted up in a sense of pride as he said "Cole can do it" then gave me that big smile.
Oh how the little things done in little moments by little people can stir big emotions in "big people" Unfortunately you never see them coming and you forever wish you could have chronicled them in pictures for other to see.
Cole played in and out of the house all morning while Cale was Erin's Shadow. Erin retired upstairs to Marcia's study to watch TV and Cale followed. I could hear Erin reading to Cale from the Toy Story book so I peeked in. She had him on the floor in front of her and big bowl of "pilfered" jelly beans between them. Cale was enjoying the reading and the jelly beans. Needless to say he did not eat much of the spaghetti I made for lunch.
Cale like Cole has an infectious smile which he has learned to display at the most opportune moments. Let's just say that when Cale wants cookies Cale gets cookies. And afterall what are grandfathers for if not to get the cookies off the top shelf of the pantry.
Posted by Jim Baker at 8:23 AM