Today Eliza visited Dr. G. for her Synagis shots and a weight check. The weeks of the 300 and 500 calorie days have taken their toll and Eliza is no long "almost" 21 pounds, she is back down to 20 pounds 10 ounces, quite a nice weight for a 12 month old, but downright crappy for a two year old, or a 20.5 month old adjusted baby. Her stature and head circumference have remained unchanged.
There is not much that can be done about this for the moment. We leave for Saba on Tuesday and there is a vague hope among Eliza's therapists, doctors and me that something magical will happen on vacation. I am not really holding much hope out for this and will be happy if she can at least get in 800 to 1000 calories a day and not lose anymore weight.
When we return at the end of the month Eliza has a fun filled week of seeing the endocrinologist, the GI and her pediatrician. Hopefully once we all meet we can come up with some new and improved game plan. The progress Eliza has made on the feeding front has been good when you look at where she was a year ago, but she still does not know how to chew and has great difficulty swallowing food. Since the problem is a combination of things there is no really easy answer, or even one answer that would address the entire problem.
Eighteen months of explaining this to people has really started to wear thin. I think I may get another sign to hang on her stroller (next to the one that says "Please Wash Your Hands Before Touching Mine"). The new sign would read something like "When Mommy Says I Only Eat Yogurt, It Means I Only Eat Yogurt." Do you think that might stop people from asking if Eliza eats McDonald's Happy Meals?
Also, can someone explain to me what people mean when they say "well she looks healthy." It definitely does not come across as a compliment, as in "wow you're doing a great job keeping this kid looking so good despite her starvation diet." Is it some sort of insinuation that Eliza does not have a significant feeding issue because she couldn't possibly look healthy and still have a feeding problem?
Or what does someone mean when they say "well she can't be that bad because she doesn't have a g-tube." This last comment is particularly troubling to me. I have chosen not to have a g-tube for Eliza, with the blessing of all of Eliza's doctors. The consensus is that Eliza would not do well with a g-tube for a variety of reasons and one should be avoided unless certain events occur or I am no longer able to continue to feed her as I do, with sleep feeds, multiple small meals a day, etc. Having a child with a feeding disorder who doesn't have a g-tube is hard. Having a child with a feeding disorder and who does have a g-tube is also hard. The common ground is that having a child with a feeding disorder is hard and that should be the focus of the discussion.
On a happier note, our bag is packed (filled mostly with empty YoBaby containers into which I will put the Dannon vanilla yogurt in an attempt to scam Eliza), my 85 year old mother's 85 pound bag is packed (since she passed her stress test with flying colors and tested as well as a 60 year old, she is getting cocky about how much she can lug with her) and UPS has delivered 96 juice boxes of Resource JFK 1.5 kcal formula and 24 containers of Benecalorie to Saba. Now all we have to do is survive 4 hours on a plane with Eliza Grace before we hop on our 12 minute flight home to Saba. The weather is sunny and 85 and the water is balmy, so no worries there.