Happy Holiday Weekend!

Just wanted to say hello because I haven't posted in a couple of weeks. Where those weeks have gone, I have no idea. We are chugging along with good days and bad days. I have a wonderful friend who is now helping with Annie and Jamie a couple of days a week, giving us some breathing room and ensuring that Annie gets fed while I get some work done or fit in a run or whatever. (Thank you, Sheila! We're so, so grateful to have you in our lives!) I've started doing some more things for BYPC (Jamie's school and where I've been working a few hours a week for the past couple of years) and it's great to see everyone in the office regularly again.

Annie is doing well and seems to be enjoying our summer weather. Or, at least she looks darn cute in her summer clothes! Not sure how she's going to handle the heat since that is an issue with cardiac kids, but we're likely to find out today with temperatures soaring into the 90s. (Me: It's going to be the hottest day all year today. Jamie: Wow. That's a lotta hot!) She seems to be getting stronger all the time, and she definitely is doing more and more. Her new favorite thing is the jumpy seat thingy (the kind that hooks over the doorframe). She jumps like crazy, laughing the whole time. The trick is keeping the dogs from kissing her the entire time!

Annie continues to give us a run for our money with eating, though. It is so frustrating! I'm guessing it's teething, but we have had a few days where it's 5 o'clock at night and she's only had 8 or 10 ounces all day. It feels like we're torturing her with food sometimes. She's gotten to the point many times throughout the day that she'll start crying if you just lay her back in your arms. She knows either food or medicine is coming, and she doth protest!

Our appointments in Boston have all been moved to July (the GI doc had to move that appointment, so Dr. Smoot moved our appointments with her as well -- no big deal since we just had an unplanned echo a couple of weeks ago). I honestly don't know what to think about a g-tube for Annie. I can't even imagine going through the surgery and all of that, but it would be such a relief to be able to get food (and now the meds that she is often spitting right back out) into her. I don't know if we're at that point though -- Annie is still on the charts and seems to be following her own curve. It seems to me that she should be eating more (hello! she weighs almost 50% more than she did at diagnosis, yet she's taking in fewer ounces), but somehow she is maintaining that curve. Hopefully, teething won't throw her off that altogether. Looking back, I think she's gained about 8 ounces in a month. She's a whopping 14 pounds 3 ounces now ....

So we'll see what everyone in Boston has to say, but not until July 6. We'll check in with Dr. Johnson here in NH one more time before that, but just for a quick office visit (no EKG or echo). In the meantime, we are planning on enjoying a nice, warm holiday weekend and wish a relaxing time to all of you, too. I hope your holiday weekend is full of friends, family, and fun!

Photos are of Annie playing on the floor and of Jamie showing off her new bike (the one that spent the first night in the bedroom with her -- she was wee bit excited, to say the least). And one of my favorites below: Pirate Baby. "Look, Mom, I dressed Annie up, too! She's a Pirate Baby and I'm the Pirate Captain." The look on Annie's face (and there's a whole series of these photos) cracks me up. I could write 10 different captions for this one!