Update on Anna

Anna and I headed to Montefiore this morning to see our Rett specialist and best bud Sasha (a.k.a. Dr. Djukic) after the bad week we've had. The past 6 days have honestly exacerbated the problems we were already having, but we were able to maintain and work within the boundaries of those difficulties and had begun to accept it all as status quo.

When Sasha first saw Anna, she held back and then said, "She looks... Vanishing. She looks like she is vanishing before our eyes."

It didn't hit me like a ton of bricks, because I knew. I knew. I knew. I knew. .... I knew.

We're going at gastroenterology aggressively. Aggressive. Before Rett, aggressive was how you played football.

She suggested we go to Boston. There is a Rett clinic there with a very good GI, she said, who thinks out of the box and will be able to help Anna. Before we set the plans in motion, she will meet with the GI who put in Anna's feeding tube, who is Harvard trained and a sweet man with two daughters of his own. I like him, but Anna became somewhat puzzling to him, I think. Everything he tried and had worked for other gals in the past, didn't with Anna. Our second opinion and then our third opinion left many unanswered questions and no progress either. Just more frustration.

Sasha will also talk with Dr. Abraham, who did Anna's swallow studies and who is awesome and has helped us in the past. She's incredibly smart. Sasha wants a meeting of the minds per se, where all three will see Anna clinically and then discuss an aggressive course of action to get her where she absolutely needs to be. Right now, she is losing weight. She isn't eating orally like she used to. She can barely stomach a bolus and the feeding pump - even set at 1 oz. an hour - aggravates her reflux. This recent bout of constipation hit her hard. Then there is the congestion from the reflux. We're also going to try out a few different melatonins to help her sleep, to see if any other ones will be more effective. The one we're using now isn't doing a darn thing and Benadryl amps her up, makes her jittery.

So today, we set the wheels in motion. Anna had blood work drawn, to check for anemia and basic liver tests and basically from what I understand the whole kit and kaboodle, vitamin deficiencies, etc. We should be meeting with the Rett Dream Team either tomorrow or early next week.

Today is the International Day of Prayer for Rett Syndrome, and I've been praying. If you are a regular reader, I am sure you are praying too. But if you haven't yet, best get on it. Our girls need a cure.