Two Week Update

Two weeks with no doctor's appointments, that's the biggest news! I don't know what we've done with ourselves ....

Well, we had the best time ever on vacation. Everything went so, so smoothly from empty planes to short security lines (anyone with kids knows that those security checkpoints can be horrible -- taking kids out of the stroller, shoes off, etc, etc) and just about everything else. We had some good weather and a little not-so-good weather while we were gone, but Jamie was just as happy in the indoor pool as she was anywhere. The hotel was fantastic with lots of kid things to do throughout the day to keep Jamie busy, but Disney and the rides were the big favorites of course! (The kid will ride any roller coaster that they'll let her on, but she hides under the table when it's time to talk to the princesses at lunch in the castle! She's a funny one.)

Mom stayed with our old friends, the Browns, but spent every day with us, helping and making our trip so, so much more enjoyable. (There are no words to thank Mom enough for this one! And special thanks to Art and Karen for the hospitality, yummy meal, and drop-off service for Mom!) Most days, Mom stayed with Annie at the hotel while Scott and I took Jamie to the parks. Annie already has had more time with her Mam than any other grandchild, I think. She's a lucky girl! Mom also got to see firsthand what a sweetheart Annie is all day long, since she was a happy, easygoing baby throughout. (Or so Mom reported ... and I have known her to gloss over some grandchild behavior ...!) Mom and Annie joined us for some of the shows and parks, too. All in all, it was a relaxing, wonderful time thanks to Mom! (And it was just fun being on vacation with her, too.)

Annie still sounded terrible for the first half of the trip or so, but her cough and congestion gradually got better. We ended up not even packing the nebulizer because I didn't think it was really doing anything for her. She just had to fight it off on her own, which she did. She wasn't interested in eating while she was sick (even less than usual, that is) and that hasn't gotten any better even though she's feeling better. She was just barely 13 pounds on our scale when we got home, but had slipped down a couple of ounces by Friday. It's so incredibly frustrating trying to get her to just EAT! She's old enough now that she can fight you actively -- batting the bottle out of her mouth and twisting her body away from you -- making it tough to just force it on her. Our appointment with the GI in Boston isn't until early June, but I'm beginning to wonder if we should wait that long. We'll see her NH cardiologist on Tuesday, and I'm sure that will be the main topic of discussion. Dr. Smoot has told us over and over again that if she could do anything for these kids, it would be to get the calories ("it's rocket fuel for them") into them. We have got to figure out a way to get them into her more efficiently, hopefully sooner than June!

In addition to the GI consult in Boston, we now have another player in the game. Annie started her PT sessions with the therapist from Easter Seals a few weeks ago. Kelly is wonderful and will be our point person for many other services related to Annie. She has been in contact with the speech pathologist with whom we met last November or December (she's a specialist in suck/swallow issues), and I think we will be seeing her again. Kelly believes that the speech pathologist will more than likely know the GI doc we'll be seeing in Boston and can work with her to keep everyone on the same page with Annie's feeding issues. I'm hoping we'll see her before early June, too, so that if she has any insights or suggestions we can get moving on them ASAP.

We'll see Dr. Smoot again on June 8 and have another echo at that point. So I guess we are on auto-pilot now (other than the feeding issues), as she said at our last appointment. We are glad to be home now that it is warm, sunny and beautiful here (we missed two more snowfalls while we were gone -- crazy April in NH!). Most of all, we are so glad we were able to go on this trip and that everything went so well. We all needed to get away, and I think it did all of us a world of good. It was great to spend so much fun time with Jamie and it was wonderful to go for a couple of weeks without any doctor's visits. THANKS AGAIN, MOM! It would have been a completely different trip without your help, that's for sure.