We'll Take It!

Long day in Boston and two kids need attention, so this is just a quick post to let folks know that Annie's echo today was good news. Boston got the same numbers that we saw at the last echo here in NH -- shortening fraction in the 21 - 24% range -- and they show a decent improvement in both the size of Annie's heart and the function. Overall, Dr. Smoot thought Annie looked wonderful and was pleased with everything she saw. (We hadn't seen Dr. Smoot since mid-April, so there was a huge change in Annie --teeth, crawling, squirming, etc.) The only change to her meds will be the long-awaited addition of a beta blocker.

Annie was super squirmy for the echo, but we were relieved to hear that Dr. Smoot doesn't want to sedate her in the future. Since the heart is getting better, she doesn't feel like we need to sedate her to have ultra-precise images. In general, they'll take the images they can get in between Annie's squirms. (At our last echo in Boston, they saved over 100 images throughout the echo. More than normal because Annie is in enrolled in a study surrounding echo techniques; still, they were doing the study again today and only managed to save around 40 images. Big difference in the squirmy girl, trying to eat the cord attached to the wand and kicking the heck out of the techs.)

Our GI appointment last week was another story, turning Annie's feeding upside down a bit (and adding a new med for reflux). Everything is still up in the air until we meet with the nutritionist and swallow specialist again next week, but for now we are trying to get Annie fed with milk that has been thickened with rice cereal. It can be tricky with her special bottle, so that adds an additional challenge. So far it hasn't been too bad and Annie has adjusted. And hey, it adds more calories per ounce!

Thanks everyone who kept Annie in their thoughts today! We feel like we can take a big deep breath after today ....