Just wanted to pop in on Gary's blog and update.
Gary is doing good. We take it day by day. Gary is getting taller. He is growing into a boy. He is getting funnier and funnier as his vocabulary improves. We have a power struggle going on in the house. Gary verses the rest of the family. His siblings have been getting frustrated with the little man getting his own way on just about anything. Hmmmm. Working on it.
Big brother McGuire heads off to camp tomorrow. I am a little nervous but have so much going on right now I am sorting thru the wonderful emotions of life right now. I went to my running coach certification class this weekend. I felt like a big girl! Back in college, on my own. It was fun. My wonderful, marvelous, incredible, amazing sister and her husband took the kids for the weekend. Daddy had to work. I left at 430 on Friday morning. Gary had been tossing and turning all night. He kept doing this weird swallowing thing. He had been doing it on Thursday as well. A few times I accused him of stealing candy! That he was sucking on it and swallowing, trying to pry it out of his mouth. Nothing. Wooopsss. Mom of the Year right here! I woke my sister up to let her know to keep an eye on him (we were at her house). She text me a thought on my way out. The text said, "don't respond to this, don't text and drive, but we had a thought about the swallowing. Calcinosis in his throat triggering his swallow reflex." Uggghhhh. It is completely possible. He has an abundance of calcinosis in his neck. Months in, when he was first diagnosed, swallowing and the muscles involved with swallowing were weakened requiring an NG tube. After muscles have been weakened and damaged, it is thought that calcinosis is what happens in place of that damage. That is how I understand it. So it is very possible. The other possibility, he has a little post nasal drip that I can't see. So keeping an eye on it is what is best. If he shows any signs of distress then I will have it checked out. He has been great since then. But I really thought of turning that car around, and blowing off my class, because my kids come first. During class, we discussed a lot the process of exercise and how our muscle kick out lactate ect,. It actually made me teary eyed hearing and reviewing how our bodies work. I had to do my best to not dwell on the fact that my sons body does this on it own to damage his muscle in an unnatural fashion. It was ridiculous. I had to bite my lip a couple times and tell myself to focus. I wasn't going to let this disease in on my passion. My passion for running and helping people with running. It is funny how my precious sons disease can walk up from behind me as if on a sneak attack and shove me down like a bully on the playground.