Wow, more than two months since my last post and still we're not in school. She feels better, she feels worse - I'm reminded of the flower petal game we played as kids. He loves me, he loves me not. I just know we're going to land on the petal that assures "she feels better" any day now. :-)
I don't want this to sound bad, we have had success. We continue to learn and we continue to make missteps - most times we don't even know what went wrong. The last time it was either: the taco salad she had at daycare (she loved it!), the two bites of five-ingredient ice cream, or - shoot, I can't remember the other item, but suffice it to say many times we're never really sure where we messed up. They've added a single wheat back to her diet daily, put her on a probiotic, and are giving her extra vitamins. Plus the nightly Miralax treatment. She's gained two pounds! That's huge since she initially lost a little more than eight, which really is 10 percent of her body weight.
As a Christmas gift I enrolled her in ice skating classes - she was thrilled! But it was apparent at the first class, all of the other kids were not really beginners. She was embarrassed, they were spending all of their time waiting for her (she was at least twice as slow as everyone else). I felt bad, too, this was supposed to be fun. The arena allowed us to apply the rest of the class money to private lessons and now she is having fun. We have a lesson this morning and we're trying to go at least one other night a week. Exercise and fun, all rolled into one! She doesn't even know that it's helping her, it's so wonderful to see. And so far I haven't hurt myself, so that's a positive...
Spring break ends this weekend, the school's given her more tutoring time and are testing her for a 504 plan. I don't even know if this is the right thing to do, but if I can't get her back in school regularly, this is what will prevent us from the Becca Bill going into effect. Truly, while she's sleeping I can hear what's going on in her stomach and it sounds painful. On bad nights, even while she's sleeping she moans and groans and wriggles as though in pain. Last night was a good night, she slept all the way through, but even as I look at her, I see the pale color to her face, the just-there sallow eyes. She breaks my heart!
But it is getting better and I'm moving toward that. She's requesting her smoothies now, she's making right choices on her own, and occasionally I see the light in her eyes again. At her most recent appointment, her counselor noted that the young girl she had seen that day was almost a different young girl than had originally come to her - there was a bit of the bubbly back in her. That young girl is showing up again more often now and we are, oh, so glad to see her!
I'm waiting for now while she sleeps, but once she opens her eyes, I'm going to give that young girl a morning hug - give yours a hug, too!