THIS is what we hated about the Recaro Monza! Not enough support for Reagan. It really needed a clip in the middle to help keep the straps on her shoulder (which were also cutting into her shoulders). As is, it was not safe.
Friday, August 12, 2016
Reagan finally slept well last night. She was quietly laying in bed when her nurse got here at 8am. She's been pretty sweet today. Less vocal. Still a lot of chorea but pretty calm overall. She only had one therapy today, PT, but she did well with that. Today was a pretty laid back day. Not a lot going on. We did have a new carseat demo dropped off. The Carrot. We've been waiting for weeks to try it, but when they dropped it off we had a huge concern. See below. The Carrot when compared to the Recaro Monza, looked as if it wouldn't even fit a toddler! After staring at it long enough, we realized that it was missing several pieces that make it a lot taller/bigger (although I'm still skeptical that it will be big enough). They called back to their warehouse and realized they had left an entire box of additional parts behind. Someone eventually brought the box by late this afternoon, but they just dropped it off and left. So we'll probably have to get our DME rep to come by next week and help us get it all put together! It looks very cushy but I just can't see that it's going to be big enough for our growing, long legged girl. Ryan was LOVING playing in the box that it came in. He was too funny! Everyone was good tonight. We're of course watching a lot of Olympics. Tonight I have noticed some neurologic sensitivity/quirks in Reagan, she's been showing some sensitivity in her eyes, a little gaggy/chokey off and on, and lots of stiffening of her arms. I'm not even going to try clonidine tonight, I'm just hoping laying down with Daddy will do the trick. Fingers crossed we all get some sleep again tonight! (I did have an interesting conversation today with Reagan's pediatrician and then a geneticist in Houston, but I will elaborate more on that tomorrow.)