Outpatient Visit at Children's

We had our first outpatient visit with Dr. Smoot in Boston today. Annie's echo showed no change; in fact, they think what might have been improvement on the last echo was just a bit of variability in the tests. It's not bad news necessarily -- her heart still hasn't gotten any worse and we have been told all along that no progression of the dilation in the short term would be a victory. It was disappointing to hear, but we have to remember that we are fortunate that it hasn't progressed and that she is still mostly asymptomatic.

Despite her cold and awful-sounding cough, Dr. Smoot said Annie looks great and was happy with her overall weight gain and strength. We told her that her weight gain has plateaued and even regressed in the past 10 days though, so we discussed the implications of that. We just don't know why she is taking even fewer ounces per day than she was a couple of months ago. She weighs more, she should be getting more, not less! It's a struggle lately just to get 16 - 17 ounces into her each day. She's been sick, but this started before the cold. Teething? Maybe. Just her age? Maybe. (The PT said that some kids get to this age and start to fight eating because they have to work a bit at the suck/swallow coordination that was automatic when they were newborns.) We don't know, but the bottom line is that she needs to get more calories. Dr. Smoot has recommended that we consult with a GI at Children's. If we end up heading towards a feeding tube, they would be the ones involved in doing it so we'll just start there and see what they have to say. Meanwhile, we're going to see how she does over the next week and hope that things turn around on their own.

The good news is that we have been cleared for vacation despite Annie's cold! Dr. Smoot said there was no reason in her mind why we couldn't go ahead with our plans. She thinks Annie just has to get through the cold, so I guess she might as well do that in warm, sunny Florida. What a relief! I was prepared for anything today, but I'm glad to hear we can plan on some relaxing family time next week. Now we just have to get through tomorrow -- the day BEFORE vacation is traditionally pretty nutty around here: packing for all of us, getting the house ready for the dogsitter (thank you, Val!), and just generally running around like crazy to make sure everything is taken care of.

On that note, this week hasn't gone quite as planned (see previous post!). I owe some major thank you notes to folks -- we have received some beautiful gifts recently. From lovely homemade prayer shawls from my mother's friend Joyce to beautifully knitted hat, sweater and booties from my sister-in-law's friend Sally to Dora-ful birthday gifts for Jamie from my brother-in-law and his family ... all of you are so amazing and have been so generous! I'm taking the cards on vacation with me with the best of intentions and hope to have them out to you all soon. I just wanted to mention things here because we are just so, so grateful for everyone's kindness and generosity.

Time to start packing! The next post should be of Annie wearing her first swimsuit ever or of Jamie with Cinderella at Disney World. :-)

Photos are of the echo and a little nebulizer treatment while we were waiting at Children's. Oh, and here's some for the Texas folks (even though I heard it was snowing in north Texas today!). This was Thursday morning around our house: