It is really hard to look at “before” photos of Reagan. She was holding her head up when we held her at the three-month photos.
She was sitting up on her own at her seven-month pictures.
She was walking with assistance at 11 months.
And now it seems like we are so far away from that.
Today Rob and I went to Target…we took the stroller, b/c Reagan can’t sit in the cart. She would flop over to one side, or maybe her head would loose control for a moment and fling backwards. I watched so many kids unknowingly help their parents get them into a cart. How? Just with muscle tone and control. Imagine putting your two-month old into the cart like you would your 12-month old…and now you know what it’s like for us.
We continued our venture out on the town by going to Panera. We ate food; Reagan sat in her stroller and was fed via the G-tube. The feeding therapist said to still make it an event when Reagan eats…and that’s never changed. We eat breakfast when she does, and we still try to make it a social experience for her, but of course, it’s not the same. She looks at us eat and you can tell she wants to do that too. We give her a couple bites of baby food, but it’s difficult for her. Today we put a bunch of puffs on her tray, and watched as she would pick them up, and then miss her mouth. Her coordination is off. Is it her eyes? Her brain? Her movement disorder? I don’t know…pick one. Pick all three. My heart aches for her. (It aches for us). She just kept trying and trying and trying, She is so determined…probably 50 puffs were put on her tray, and she got one or two in her mouth. Bauer got the rest.
Every day is hard. No day is easy. Some times are fun, most times are challenging. I really hope we aren’t destined to be in this valley forever. It can’t storm forever, right? The sun has to come out…that’s how things grow, rain…and sun. I really want the sun to come out.