Swallow Study & Other News

Annie had a swallow study done yesterday at Concord Hospital. The nutritionist, physical therapist, and swallow specialist who met with us a couple of weeks ago had recommended we do the study based upon Annie's history and the way she sounds after she eats. Most of the time Annie sounds pretty junky and congested after she has eaten, so we weren't terribly surprised about the suggestion to do a swallow study.

The swallow study was very cool. (This is Annie sitting in the seat as we waited for the radiologist to come in and start the study.) It's a video x-ray, basically. They mixed barium into formula (they said they couldn't stand the thought of using Annie's breast milk and ruining it with the barium!) first, and we all watched on the video as Annie ate. Sure enough, you could see some of the formula starting to go towards her vocal cords and not straight down her esophagus. She did much better when they moved on to some thicker things -- a thickened cranberry juice and sweet potato puree that we fed to her by spoon.

We won't have the final report for awhile, but the preliminary report will be sent to the GI we are seeing in Boston this Friday. There is a decent level of concern about her eating now (yes, just as things were starting to go so well -- oy!) because of the risk that she could be aspirating milk into her vocal cords and lungs. I'm not sure what all of it means for the short term or for the long term, but I know we'll have something to talk to the GI about on Friday now!

Meanwhile, the swallow specialist has asked us to try thickening Annie's milk with pureed bananas or rice cereal or something and see how much we can get into her via spoon feeding. We'll give that a shot today or tomorrow for a 6 - 8 hour window. The question, of course, is how we can continue to maximize her caloric intake while making eating as safe as possible for her. Milk is the best thing for her, calorie-wise and nutrition-wise, so we'll have to work out if we can thicken it and spoon feed it to her efficiently. She has tried a few foods via spoon on a few different occasions, but she isn't used to spoon feeding. So, we have to see if we can get her to be more efficient with spoon feeding if we can get her more practice at it.

The only other news is that the next echo in Boston has been postponed from this Friday (when we had it scheduled to coincide with the GI appointment) until next Wednesday. Lucky us -- two trips to Boston within a few days. C'est la vie. I'm not complaining! We'll combine Friday's visit with a trip to Boston Children's Museum for Jamie ... we're still so darn grateful to be living close to Boston!

Otherwise, Annie is still doing GREAT. Her third tooth has popped through, she is able to push herself into a sitting position now (and launch herself back onto her belly to crawl wherever she wants to go), and she is still pulling herself to a standing position in the c0-sleeper (constantly) and pack-n-play. Her physical therapist said that if Annie were evaulated right now she probably wouldn't qualify for services, other than her feeding issues. She is really looking great and we are just so, so, so hopeful that her echo will reflect some positive changes, too. She was just a smidge under 15 pounds last time we weighed her, so her weight gain seems to be following her own little curve, too. (This photo is from the fireworks last night in Manchester.)

Thank you to everyone who has continued to follow Annie's story. I get nice little e-mails or notes from folks saying they continue to check the blog, and it is hard to describe how that makes me feel. It's as if we can feel everyone's support and encouragement, wrapping our little Annie in best wishes, prayers, and hopes. I knew there were some pretty amazing people in our lives, but the past year -- and it has been a year this month since Annie's in utero diagnosis of EFE -- has shown me that I really had no idea how amazing people can be! It has been a long year, to say the least. But there have been really incredible things that have come out in the past year, too. Family, friends, co-workers at BAE, co-workers at BYPC, everyone at Willow Bend, neighbors, and friends-of-friends top that list. Thank you.