Thursday, May 1, 2014

honesty & opthalmology

Yes, we know.

We know the cause of many of Maisie's problems.

We are making a lot of progress.

But I'm not ready to share with you.

I hate doing this. 

After the scare and false positive we had, I can't bear to find out that this isn't the truth.

I feel as though I have been lying to you since April 23, and I hate this. I know that keeping this information quiet until I have completely and fully dealt with and processed it myself is the right thing to do, and yet I feel guilty. Like I'm lying by omission. Every time someone asks me about Maisie I feel like I'm lying by omission, by not expressly saying "This is what happened."

I want to be honest. But I have to take care of myself.

In brighter news, physical therapy is going extremely well! We started doing twice a week sessions and every in-between day Maisie spends half an hour sitting up and five minutes walking. We have not gotten past five minutes yet, but this is still such a huge step. She is sleeping literally all the time. She wakes up at nine, has a feed, and falls asleep again by ten. She sleeps on and off until noon or so, when she gets lunch, and then is awake for about two hours for physical therapy. After physical therapy, around 3:00, she conks out in front of the television and I often can't get her to stay awake for the whole feed. 

She also has literally zero interest in feeding by mouth. She used to at least take a bit, a couple of graham crackers or two bites of oatmeal, but now she is just so tired. She'll fidget with her food and maybe take a single bite, but literally that's it.

Drill Sergeant June says that none of that is unusual. We're pushing her fast and hard and she's worn completely out. And that's okay. 

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