Ups and Downs

If something wasn't going to be good news, I'm glad it's the swallow stuff and not the heart stuff.

We had Annie's second swallow study done in Boston on Monday. She has sounded great lately (no "wet" sounds after eating) and really seemed to be doing well when eating, so we were hopeful that the swallow study would be normal (or nearly there). Unfortunately, it was not better than the last study -- if anything, it was worse. This time, Annie did aspirate clearly at least twice (whereas last time she didn't clearly aspirate, but was said to be at high risk for aspirating). So, thin liquids (normal liquids for the rest of us) are still not safe for her to ingest. We can continue feeding her the thickened milk that we are giving her, thankfully, since she handled thickened liquids well.

The downside is that the ENT told us that he would take Annie into the OR to probe the back of her throat if this study wasn't normal ... which clearly, it wasn't. (We don't need to see the report to know that!) We don't have the follow-up with the ENT until the middle of November, but luckily we were allowed to go forward with what we have been doing (thickening her milk) and weren't sent into panic mode or G-tube mode.

It was a letdown to hear the news, but like I said ... if one thing has to go south, I'd much rather it be the swallow stuff than the heart stuff. Still, we hoped for better news and hoped not to have an OR visit in the near future. I thought I had prepared myself for the news, telling everyone that Annie had to be sedated one way or another (for the CT scan of her nose) so it was no big deal if she had to do the OR visit at the same time. Secretly, I was sure the news was going to be good and that we'd be fine. I was bummed ... but then Annie's wonderful physical therapist snapped me out of it and put it in perspective. She is the one that pointed out that we were home and not admitted to Children's in preparation for the placement of a feeding tube. Oh, yeah. Be grateful that we've gotten as far as we have ... and, my new mantra: it's not a heart transplant. It's not a heart transplant.

Meanwhile, it is difficult to remain bummed anyway, since New Hampshire has put on the dog and is gorgeous beyond belief right now. Every fall it strikes me that I live in NEW ENGLAND now (going on eight years now, unbelievably). The colors are simply amazing! And thank you, Scott, for patiently taking me leaf peeping every year ... despite the fact that you are totally red/green color blind and see little of the beauty! I only hope some of the color remains through next Tuesday, when my parents arrive. Almost eight years here and my parents never have been able to experience a beautiful New England fall. (Last year they missed out because they had to come at the very end of the color ... but just in time for Annie's debut. Really? Is she almost 1? In some ways it seems like it has been years since she was born ....)

Oh, and I almost forgot! Annie decided to take about six consecutive steps in the radiology waiting room before the swallow study! She first rolled over when she was a patient at Children's last February, so I guess she has decided to mark milestones there .... Whatever the case, there was a time when we weren't certain that she would walk anywhere near her first birthday. Go, Annie! You amaze me, Bug.

P.S. All you have to see in the last post (Annie's EF Graph) is that the latest echo, Echo #4, fell between the two lines representing the normal range. Sorry I didn't clarify that before!