Sick and sleepy

Last night was our anniversary. Jeff really wanted to take me out to dinner, and I really wanted to go, but my parents had another commitment. I just didn't know if I could leave Maisie with a babysitter. Lately she has no energy. When she's not in the stander or in physical therapy she's curled up on the couch or the floor or in this baby swing (yes she still fits in an infant swing). She's so different from your average four-and-a-half year old. Most kids are running around, playing dress up and house, getting into trouble and climbing on the swing set. But Maisie's behavior has grown much closer to that of a ten month old baby. She doesn't get up and walk around very much. She's quiet and sleepy, sucking her thumb and exploring textures. When she has to go to the bathroom, she cries for me to bring her to the potty, but half the time she doesn't have the strength to relieve herself.

She's struggling with everyday tasks, she's worn out and frustrated with her own incompetence. It breaks my heart into thousands of pieces to watch her work so hard to play, eat, color, brush her teeth. We've almost given up on getting her any nutrition by mouth because it's so frustrating for her. She struggles to grasp the piece of food and then struggles to get it into her mouth. Her body is failing her, but her mind is sharp enough to know that something is very wrong.

I took this picture three weeks before her third birthday. My sister Miranda took us out to Crumbs to get cupcakes to celebrate her birthday, and Maisie devoured that entire vanilla cupcake by herself. The mom part of me felt guilty for letting her have that much sugar and fat, but today, if she could do it, I would let her have all the cupcakes she wanted. She's losing weight again, by the way. She made it up to 25 pounds, but at her physical yesterday she had lost two. The pedi wants to put her back on prescription formula as well as the blenderized diet, and basically see if we can force-feed her to thirty pounds, which is the estimated "healthy weight" for her height (still 32 inches. No, she hasn't grown at all since this post two months ago.)

We did see the developmental specialist this morning, and she firmly believes that Maisie has no mental retardation. Her motor skill issues are, according to the doctor, derived from a neurological inconsistency. Basically, her brain is not telling her fingers and body how to control themselves. At this point, there's nothing we can do to fix the problem except physical/occupational therapy. 

Speaking of which, her Theresa Method sessions have been going very well, even though we haven't seen dramatic results yet. At this point in her therapy, the goal is to reduce her stress and frustration so as to open her mind to the possibility of getting stronger. As Nadine described it to me, there can be no improvement until her qi is aligned and her mind is relaxed. Even though her physical well-being is the same, her intangible self is improving and growing stronger, which will in turn help her physical health. 

I don't know. It sounds far-fetched. But at this point, my daughter is in pain, she's sick and scared and weak and I will do anything that might help her.

Lots of love, as always,

Charlotte