Breathing trouble :-( physical therapy, and Grandma's house :-)

Okay bad news first. Sophia has been wheezing intermittently for a couple days :-( And she's not sick :-( Also for those of you who follow close and may be wondering, I hadn't started her anti-seizure meds yet like I said I was going to, so it's not a side effect either. Every time something new happens I think "no! I'm not ready!There's so many things left on the list! We just barely got started!" To be clear---she's not going anywhere today, this is just a new intermittent thing. Part of her condition. But I do panic a little when I have to get used to something new.
Jason gave me a book about losing a child. You know what it says in the first few pages? Children die. We don't talk about the statistics, but they do. All the time. Want to know how much? 15% of babies born don't make it to their first birthday. 19% of parents will outlive at least one child. And 1 in 4 children will lose a sibling or a parent by the time they are 18. Well....it actually helps to know I'm not alone. This is not uncommon. At all. And one day our time with her will be up. I just sincerely hope I can do all I can and make the most of every day so that we can have lots of beautiful memories. I have a personal belief that not only will we get to keep those memories, but she will too. And in the spirit world, anytime she wants  to revisit the time we took her to see where Mom and Dad got married she'll be able to (and whatever else on the list we get to ;-)
Balancing memories with her needs also comes into play. She did have a hard time from being overstimulated at Jonah's graduation. And today was a big day with physical therapy. When she gets too much stimulation she gets jerky. I think we'll stay home until Sunday.

Today we went to see a physical therapist and he was talking about referring me to a speech therapist, who could maybe help with her swallow reflex. Maybe she can take some more bottles. When I feed Sophia through her tube I feel like a nurse. As her mom I'm the best nurse in the world of course, and I LOVE taking care of her :-) But when I can feed her from a bottle, I feel like a MOM :-) :-) :-)

The best part of today was going to Grandma's house! Sophia's first time! Yay!