Last time I wrote we were meeting with the occupational therapist. We had that meeting, and he showed me some more exercises to work on with Marie. She seems to have a problem with her reflex to catch herself when she starts to tilt. She'll lean, but she doesn't reach out her arm to brace and catch herself. He was concerned about that simply because she could really hurt herself toppling from sitting to the hardwood floor. So, not only are we working on teaching her that reflex (extend arm, open hand, brace) but we have to be really careful with her. He also observed that she tends to leave her hands fisted up like a newborn would, so any exercise that forces her to open her hand fully is good. Plus side, when her hands are open, the work just fine. She can pick up all the tiny things and insert them into her mouth, so I'm still on tiny toy patrol (not that I would have stopped, but man, you'd think eventually I'd have collected them all. We seem to have an endless supply of things small enough to fit through a paper towel roll!)
Head control was discussed, as was posture, because sadly these are two things Marie is really struggling with. So, we'll continue to work on it. The Oc. Ther. says he'll probably just work with our Phys. Ther. rather than coming to see us weekly. I also found out we can get a lot of this through BOCES so I'm going to be calling on that. Our insurance only covers up to so much physical therapy and we'll be needing more than that so it was nice to learn that we can do that (thanks tons Jess for checking into it for us).
Marie, though her body doesn't work right, is still smiling all the time, and a happy happy girl. This is a huge comfort, as the physical things we can easily overcome or make modifications to get by. I'm so glad she's happy, because I am willing to carry her wherever she needs to go.
Josie's ear is getting better (I haven't seen any signs of infection for a few days). We will have to go up to Ft Collins to the Ear/Nose/Throat Doc though on Nov. 30. She'll have a hearing test, and then we'll look at why she continues to have infections. Britt, we should do lunch that day. I'll call you :)
Josie also was assigned a part in the church Christmas pageant this year. She will be Angel Number Three. The program is on December 16, so if you can, it will probably be a kick to see her perform!
Marie has been doing slightly better with vomiting. She made it 4 days without being sick, but got sick last night. I've been noting what she's been eating when, and the times, but am beginning to see a correlation between the severity of her tremors and her vomiting. It seems the worse she is shaking the more prone she is to getting sick. I've noted this and will be bringing it up on the 6th at our appointment.
All in all we're doing okay. We actually had a few days where all felt normal this week. One day Josie and I walked to the park with Marie in the sling, and yesterday we surprised Luke and Papa Steve with Subway while they were working. I just treasure those little moments, and try to create as many of them as we can. As my cousin said, we too have developed an appreciation for how terribly fragile life is. How grateful we have become for every day. We truly have been blessed, not only with Marie and Josie but with the amazing support of everyone in our circle of family and friends. I've been told how strong we are, but it is only because of the support we have that we are able to cope so well. Thanks to each and every one of you. Everyone have a wonderful Thanksgiving, much love- Shan