You'd Never Know

You'd never know this girl is sick, would you? Annie is looking great, or at least we think so. She had the smallest of backslides with the increased Lasix dose, and now is back to putting on weight like a champ. She's almost 11 1/2 pounds now, in time for her four month birthday (yesterday). Friends keep saying that you just wouldn't know her heart isn't doing what it's supposed to be doing.

She is such a happy girl and so easy going! She absolutely loves to laugh these days, and thinks it is the funniest thing ever when you laugh with her. She also loves to watch her big sister playing -- no wonder, as there is always A LOT of action involved in anything Jamie is doing!

We are getting somewhat used to the new demands of life with Annie and her medications, but haven't been able to get enough time with Jamie. (Getting food into Annie is just about a full-time job. It takes her a long time to finish 2-3 ounces, so she ends up eating just about all day long.) We are awaiting "the troops," otherwise known as my parents. They are coming back sometime this week so they can help out and be here for our next hospital stay. Thank you, thank you, thank you! We are so, so fortunate that Mom & Dad are able to put their lives on hold for a little while and come help us. It's the next best thing to having them nearby ("there's still a house for sale on our street"). Jamie has long, long lists of all the things she wants to do with her Mam and Pap -- consider yourselves forewarned, Mom & Dad!

We had an initial meeting with Early Intervention here in NH. They contract with Easter Seals for services, so the Easter Seals folks will be here on Tuesday to evaluate Annie. We filled out a questionnaire about Annie for them, and she seemed okay in most areas until it came to fine motor skills. A heart problem doesn't qualify for automatic services, but if it is determined that Annie has a metabolic disorder it will qualify her automatically. I find that kind-of scary ... automatic means they expect with some degree of certainty that there will be developmental delays. I don't know at this point whether to hope that she does qualify or that she doesn't qualify.

Meanwhile, it seems to us that Annie has been doing a bit better strength-wise. Her head control seems to be better and she seems to be doing better when we hold her in a sitting position. The intake coordinator commented that she was doing well with her head, too, so that's one outside opinion (since it's been four whole days since we've seen a doctor!). I don't know what to think about that. Maybe she's stronger because her heart is working less hard or maybe the hypotonia and the cardiomyopathy are unrelated. (I like the idea that they're unrelated because it would steer us away from a metabolic issue, and we are still sweating out some of the nastier metabolic possibilities.) Who knows? It's nice to see her looking so well, no matter what.

The photos are a four month portrait (on a blanket her Mam made for her while she was in the hospital last month), another attempt to get a good pic of her smiling, and yet another sleeping picture. (I have 10,000 photos of Jamie sleeping when she was a baby. I thought I had learned my lesson and wouldn't snap a photo every time Annie was asleep ... oh, wait, Scott took this one!) And one of Super Jamie ("this baby blanket makes a great cape!").