If you have children, you definitely know this. When they come into this world they are so small, but they make your heart want to explode because it is so full. But, as they get older and you get older, it's the little things that you start to take for granted. I have to constantly remind myself to remember the little things. Like the way you feel when they say their first real word, or take their first step. The pride you feel when they take the initiative to make new friends, or the first bike ride without training wheels. During the chaos of daily life, the little things can sometimes go unnoticed, but they are there.
When you have a special needs child, it always comes down to the little things. It was the little things we noticed about Grant when we knew something was wrong. Ironically, it was one of the littlest things that Rylea noticed that turned out to be the biggest issue. Rylea first noticed the 'head nods' that turned out to be seizures.
And now, in our journey to get him better, it's the little things we look for.
A little over 6 weeks ago, we started Grant on CBD oil (medical marijuana). While his seizures have been controlled by the onfi and depakote, it appears he is still having some seizure-like activity based on his last EEG. Our neurologist isn't supportive of using the oil for seizure control, but she is supportive of adding it to help his behavior and cognitive issues.
He was sick with a cold when we started him on it. When Grant gets sick his behavior goes downhill. He becomes stubborn, won't listen at all to any directions, and screams a lot. Basically, he is not pleasant to be around. His teachers at school even made mention of his behavior a few times. This lasted about a week and a half. During the worst of it, we had Grant's IEP meeting with his teachers. IEP stands for Individualized Educational Program and is Grant's plan for the school. It lays out the goals we would like see achieved, the therapies he needs and any special instructions. Before going to this meeting Rylea were hoping to get Grant in the full-day program at his school. Getting him into the program really depended on whether Grant could handle a full day of instruction and if he would benefit from it. The way his behavior was, we were not very hopeful, but the meeting went very well.
His first day of the full-day program also came on the same day we increased his dosage for the CBD oil. His teacher had a glowing report of him. His good behavior continued on. Over the next several weeks, Rylea and I starting noticing some small things here and there with him that have added up to really big things.
Firstly, he has starting picking up objects around the house and presenting them to Rylea or me with the names. He would pick up a teddy bear and show it us and saw "teddy bear," he'd pick up a bowl and show Rylea or me and say "bowl," he'd pick-up Emery's blanket and say "Emery!"
Secondly, he has been much more playful with Cole and Emery. In the past, his interactions have been to steal toys from them and run. Recently, he has actually been playing chase and interacting with them. The house is filled with quite bit more laughter now.
Thirdly, he is starting to be able to answer questions appropriately. He pulled a picture off our refrigerator that we have of Cole and Grant playing with a sand table. This picture was taken a few years ago. I pointed at Cole in the picture and asked "Who's that?" and the Grant replied "Coley." I said "very good!!" then pointed to Grant in the picture and said "Who's that?" he looked me in the eye and "G-R-A-N-T" My eyes welled with tears. Not only was this first time I had seen him recognize himself in a picture but he spelled his name. He actually spelled his name!!
Lastly, but certainly not the least, his teacher has said that he has been very talkative lately, and not just babble and nonsense words. He is actually saying sentences and conveying his thought through language.
Seeing it here all in one place, it looks like a great deal, and it is. But we saw it bit by bit, piece by piece, little thing by little thing. He still has a quite bit to go, but this is enormous progress. All because of a little plant. It's always the little things.
What great love in your family. I love that picture! What fun!
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