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We just got home from Children's. Rumors of being discharged by noon turned out to be just that: rumors. We finally got out of Boston around 4, dodged a medication crisis at the local pharmacy, and have just gotten the car unpacked. Thank you, Nikki, for the wonderful "Welcome Home" sign -- what a nice greeting when we walked in the door! Likewise, how incredibly nice to not have to worry about cooking dinner for everyone. Thank you, EVERYONE at BYPC!

Annie's glucose level (a simple heel stick) came back perfect this morning, but we later found out that it isn't a 100% guarantee that she doesn't have the fatty acid breakdown issue. A more involved blood test will confirm with certainty whether or not she has an issue, so the genetics/metabolism specialists have said that we have to feed her every four hours until the test is back. So much for enjoying a baby who sleeps through the night! In any event, it means we're back to Dr. Smoot's Plan A for treatment, not going off in another direction with a possible enzyme issue. Oh, and here's the kicker, none of this enzyme issue has anything to do with her cardiomyopathy; it's just something else they may have found amidst all of the bloodwork they've been doing.

So, we had the dreaded big blood draw today. It's been hanging over our heads since Wednesday (including one failed attempt on Friday), but we finally got it done today. It took both arms, but Annie didn't really get upset until they removed (yes, removed) the needle on the second arm. She slept through most of the blood draw until then! They got plenty of blood for all of the tests the various departments wanted to run, but we'll have to wait up to a couple of weeks for some of them. I suppose it's life now and I have to get used to it, but my heart just sank when they told us she should have more blood drawn this week just to check her electrolytes and potassium and a few other things. Yuck.

Along the lines of life now ... we'll go back to the cardiologist here in NH this week and also have to see her regular doctor on Monday or Tuesday. In addition to getting the catheterization procedure scheduled sometime in the next month, we'll be going back to see the neurologist and geneticist up here -- "just to check in with them." We'll also be following up with neurology, genetics, and metabolism clinics at Children's once the blood tests are all back. For Annie's muscle tone and developmental progress, we'll be contacting early intervention (in our case, Easter Seals) so that she can be evaluated for therapy through them. On the medication side, we have Annie on Captopril at 8am, 4pm, and midnight. She takes Digoxin at 8am and 8pm. We'll begin adding back in a bit of Lasix tomorrow morning, but that will just be once a day now. At some point in the near future, Dr. Smoot will be adding a beta blocker to the list.

Here's a bit of deja vu from last summer shortly after Annie was diagnosed with EFE: Annie's diagnosis has brought a concern about Jamie's heart back to the forefront a bit. The cardiologist in Boston confirmed that Jamie should have an echo done sometime soon. There can be familial links with dilated cardiomyopathy (DCM for short -- the type of cardiomyopathy that Annie has), so she has to be checked out just to be certain she doesn't show any signs of it as well.

I'm ending this post on a positive note ... not only are we home, but we're home with a 10 1/2 pound baby!! We thought she looked bigger in the hospital, but I had no idea she had gained just under a pound since Monday. Wow! The extra calories (and, I hope, the meds that are keeping her heart from working as hard) are making a huge difference. Yeah! We'll take whatever positive news we can get right now, and it's great to see her growing. Three-to-six month clothes are just around the corner! AND, I forgot to mention in yesterday's post that Annie decided to meet a milestone while she was in the hospital -- she rolled over on her own twice yesterday. Hooray for firsts!

I have a few more pics to get up, but it will have to wait. Jamie needs some special attention, as do the pups. :-) At the risk of sounding like a broken record, please know how grateful we are for everyone's interest and support. I haven't been the best at returning e-mails or responding to posts, but please don't think that we haven't read every single one and appreciated them all.