The blog, the blog, the blog!

If I had a little cartoon bubble of dialog above my head over the past weeks, it would have read "I need to update the blog!" I don't know if the end-of-winter blahs got to me, if there was not much to report, or if I was too busy being a mom to write about being a mom! Probably a combination of all three, now that I think about it. It can be challenging to find new and diverting entertainment as winter drags on and on, and reporting the intricacies of doing one more puzzle (while pulling Annie off the top of the kitchen table yet again) doesn't seem to be a fun thing to do, either.

Now, however, the snow is gone, the sun is shining, we are newly back from a soul-refreshing vacation (thank you K. and T. -- a million times over!), and I even have a bit of news to report. It's likely to be a long one, sorry.

Here's the lowdown on the medical side of things:
1. Annie saw her cardiologist here in New Hampshire last month. He continues to be pleased with how Annie is doing and feels that her appointments in Boston every three months should be sufficient now. So, instead of seeing him between our Boston visits, we won't need to check in with him again for a YEAR. I know he was saying that because Annie still is followed closely in Boston, but still. It's a step in the right direction!
2. Dr. Johnson had the report from our last visit in Boston (in January). We didn't get the final numbers while we were there (and I suspiciously and pessimistically thought that Dr. Smoot did not bring in her usual bevy of charts because the numbers had dipped a bit and she didn't want to show us), so I was interested to hear. Despite my pessimism, it turns out that Annie's Ejection Fraction was up just a smidge more -- from 56% to 58%. It's barely mentionable in terms of actual change (especially given the extreme squiggliness of the patient!), but it was good to hear and still in the "low normal" range.
3. Scheduling Annie's sedated echo/bronchoscopy in Boston has been a struggle. It's the first time I have had to really hound folks to get things done. I wasn't anxious to go through with the procedure, so I was happy to play phone tag ... until exactly April 1. It suddenly hit me that it was April, that we hadn't had an echo since January, and that we didn't have one on the books anywhere yet. Plus, Annie seemed more tired and took an ultra-early nap that day. Add several stories on the cardiomyopathy foundation's list serve lately surrounding kids who had been doing well and had taken sudden, drastic turns for the worse and that was all it took! It's nerve-wracking not getting a regular look at that heart, even barring any onset of physical symptoms. (And a too-early nap? Symptom? Doubtless not, but the mind quickly races from point A to point E, believe me.) I kicked into high gear and told the various doctors' assistants that I had just gone to Defcon Five. Long story short (honestly, this is the short version), Annie is scheduled for her procedure on April 30. Now, someone tell me how the heck we're going to keep an IV in this kid!!!
4. We have our last PT session with Kelly from Easter Seals tomorrow. (Sniff, sniff.) Annie's services will be managed by a Speech Therapist from now on. (Annie continues to lack upper body/shoulder/torso strength, but you wouldn't know it unless you were a physical therapist. She compensates for it very well, and it makes her little walk too funny. I keep trying to get it on video so I can get it up here.) We'll continue to do things on our own to help Annie develop strength (gym class at the Y, all the wonderful suggestions from Kelly, etc.), but the biggest focus of concern has shifted onto her eating skills and her speech. She is still not speaking for all intents and purposes (a vague approximation of "uh oh" and "mama" and that's about it), and she is a mess. Literally. A MESS. She is really testing my stain-removing-Supermon capabilities and my ability to keep up with laundry ... since every solid food she eats gets mashed, made gooey and disgusting, and then comes back out. LOVELY. Sometimes she even stops as she is walking along and bends over at the waist to spit it out on the ground (so fun to explain -- you'd think she was stopping to lift her leg and pee on a prize orchid by the looks on people's faces sometimes), but more often than not the masticated glob blob gets evicted unceremoniously onto her clothes. Or my clothes. It's no wonder the kid goes through several outfits each day! And no wonder I pretty much dread giving her solids ... ugh. She demands them, though! She opens the pantry, points to whatever she wants -- goldfish crackers elicit a particular groan since they turn into a cheddar-y, paste-like goo that drives me crazy -- and even closes the pantry door after I retrieve the oh-so-politely (HAH!) requested item.
5. Weight seems to be chugging along -- last time I checked she had rocketed to the 12th percentile in weight (and a whopping, unheard-of 49th percentile in height). She doesn't look quite as peanut-y for her age these days!

I think that is about all of the medical news around here. In other news ...
1. Jamie turned 5!!! I never want to see pink or purple tulle again, but it was a princess-y good time. :-) In honor of her fifth birthday, Jamie has picked up a new habit. She actually rolled her eyes at something I said the other day. She's FIVE!!! Good grief! (Is she my kid or what?!? Wait, do you hear that? It's my parents trying to stifle their gleeful chuckles ... or not stifle them, actually. Guffaw away, you two. Go ahead. You earned it!) When asked where she learned to roll her eyes, she proudly told me that she "just learned it all by myself!" She also asked me today if I was proud of the sun. "For what?" I asked. "For not making anymore snow!" she responded, obviously in heaven to be spending the entire afternoon outside. She is swimming like a fish (cannonballs into the deep end!), especially after our week in Florida with all-day every-day swimming. More than anything, she is SO excited about her first-ever sleepover and tells anyone and everyone about it. ("When my baby sister has a little operation, I get to sleepover at my best friend Hannah's house!!" I'm sure Annie takes no offense to the fact that Jamie is looking forward to her sedated echo!)
2. I am threatening to take Annie to a baby psychologist. (No, not really .... But somedays I would take her to a medium or baby whisperer or tarot card reader or phrenologist or ....) She is doing our heads in! It's a long story, but she has become a brute. Without any notice, she will grab at our faces or arms or anything she can reach; whack the dogs over the head; or head-butt Jamie. I am going to write the list serve folks and ask them about the side effects they have seen with beta blockers (it has been mentioned before, but I am REALLY interested in the details right now). We have no idea if she is agitated by the meds, or if she is frustrated at her inability to communicate effectively, or ...??? No idea. Being beaten up by your innocent-looking 17 month old makes for some really long and emotionally draining days, though. (We are doing sign language with her as we did with Jamie, and she has 20 or more signs, but she still gets very frustrated when we don't get her meaning right away.) (And let's be honest ... knowing how to sign gorilla and dinosaur and duck doesn't do a whole lot in your everyday life, unless you happen to be visiting a zoo or have a rather eclectic set of bathtub toys. And I think she finds pointing and screaming like a pint-sized inhabitant of a kung-fu movie much more effective than signing "more, please" ... aye aye aye. She's either going to be a wildly successful CEO -- although I can guess how her employees will feel about her leadership style --or a comedian.) I won't even get started on her must-do-everything-that-Jamie-does attitude, because I'm sure everyone else with more than one kid has gone through it, too, at one time or another. It's just odd to realize that there just weren't markers out and floating around all over the house when Jamie was Annie's age (or Play-Doh, or Polly Pockets, or anything else less than 100% infant-approved, pediatrician-recommended -- but hey, the kid can't swallow solids, right? Silver lining: low chance of choking, right? Right?!?). Annie is adamant (a la the aforementioned kung-fu movie rapid-fire burst of loud, unintelligible syllables) about getting her hands on any type of writing utensil. As a consequence, she ends most days looking like some sort of Rohrschach test by way of Picasso. (Which will win? My expanding stain-fighting skills ... or my growing desire to overlook all manner of mess on a poor, neglected youngest child? Hmmmm .....)

Gee, can you tell the little one has decided that she had to step things up a notch? We laugh regularly about our early assessment of Annie's temperament ("mellow, easygoing -- just like her dad!!"). I guess she just needed a little more blood pumping around her body so she could let her true colors fly. And speaking of flying ... I have spent the past few months retrieving Annie from the top of the island or the top of the kitchen table regularly throughout the day. Today, as we started our spring clean-up in the backyard and spent the afternoon playing, I realized a whole new world of possibilities has opened up: namely, the swingset/play structure. Good times ahead. Maybe it's my heart that will be having problems soon, as I imagine Annie tumbling hourly from the top of the slide!

Phew, quite enough! Sorry for the extra, extra long post. I'll not make this any longer just now, but I'll post some photos separately. Thanks for checking in on us, especially since I haven't been good about keeping the news flowing lately. Like spring, I feel ready to start anew now that the long, snowy winter is behind us. :-) Hope everyone is enjoying the weather -- I hear spring sprung in the rest of the country weeks and weeks ago.