Thursday, March 26, 2009

Inconclusive is not an answer

We're heading to Boston to see Dr. Buie. I'm trying not to expect too much. We saw him a couple of years ago and have been following up with phone consults. He seems to be able to work wonders with other kids but refers to Becca as a "hard case." At least he tries. We know we're not getting any answers from anyone at CHOP. Their GI department is a joke. Wait five months for an appointment, get a prescription for Zantac. They completely botched an endoscopy and Dr. Buie had to do the whole procedure over again.

Becca's pediatrician says she's probably going to be one of those kids that always falls into the "we don't know" category. Comforting words from a pediatrician. At least she's honest. It's getting kind of frustrating. The neurologist says the MRI is "inconclusive." The endocrinologist says some hormones are elevated, but "we don't know what that means and there's nothing we can do about it." The metabolic specialist says something is "not right" but she can't put her finger on it. Not exactly helpful, but at least they weren't insinuating that I'm imagining all these issues. We've been down that road before.

So it's off to Dr. Buie today, and in May we see Dr. Rossignol. Wish I'd made that appointment years ago. Somebody out there has to have some answers. I have to believe that.

Sunday, March 8, 2009

OK, I've completely ignored this poor little blog for more than a month. Life with autism tends to get in the way of writing about life with autism. So much has been happening, and Becca is making such wonderful progress. This last month has been amazing!

One little incident this morning made me realize how far we've come. When Becca woke up she asked me if it was Sunday. I said yes, and she looked disappointed. Then her face changed, and I could see something going on. She quickly said, "I have a sore throat." Then she turned away, unable to look me in the eye. She had remembered not going to church last week because she had been sick with a sore throat. Trying not to laugh, I told her not to lie about being sick in order to get out of going to church. She looked at me, shrugged, and said, "Well, it was just one little lie."

Now do I want my daughter telling lies? No way. But am I thrilled that we are now at a point where she needs to be taught not to lie AND to not justify the lie? You bet. Two years ago, I couldn't imagine having such a conversation with her. Now I'm starting to deal with the NORMAL things that parents have to teach their children. And I'm loving it!

Before autism