We were in Boston on Tuesday -- funny how quickly it feels normal to be making regular trips down there! (Note to travelers into Boston, though. GPS only knows about the traffic on the highways. If your GPS tries to re-route you off the highway to avoid delays, I would suggest you NOT listen to it! Boston is an entity unto itself, defying GPS logic at every turn - literally!) We met with Annie's ENT doctor to see where we are. (And HUGE THANKS to Jennie and Emma for taking Jamie on for the whole day. Jamie didn't want to come home when I got there to pick her up -- she had too much fun! Thank you for giving us a peaceful visit with the doctor!)
I thought I was sneaky and had zzzzooooommm'ed away from an MRI for Annie a la Wily Coyote and his rapid-fire hamster-wheel racing feet. Yeah, not so much. Turns out Dr. Rehbar has a bit of Wily Coyote's nemesis Bugs Bunny in him .... It was one of the doctor's first questions: "What are we doing about the nose?" I questioned him in-depth more than before and I am resigned to having the MRI done now. We need to rule out the possibility of something heinous lurking behind the cute dimple in Annie's nose. (Seriously? Ugh.) I haven't called Dr. Smoot yet (cardiologist), but I imagine we'll be doing another sedated echo at the same time since Annie is still in that age range where it is needed - she's too young to bribe or even to distract during the procedure with a video. So, at least we'll get two-for-one on that sedation as well. But yeah, another night in the hospital, another sedation, yuck, yuck, yuck. (Could be worse, I know. I keep telling myself that. Still, when you are dealing with a seemingly pretty healthy and VERY ACTIVE toddler, it's hard to console yourself with the thought that sedation is still in the realm of best-case scenarios.)
Dr. Rehbar asked a lot about Annie's sleeping at this visit. Ironically, we have been having a very rough time with her at night lately. (Maybe Dr. Rehbar noticed the bags under our eyes and our slow reaction time? I feel pretty foggy 90% of the time these days, and I can't imagine how Scott is doing it! I keep envisioning him nodding off at the controls to a laser and zapping a co-worker or something.) In general, we do the normal parent thing of name that variable when it comes to sleep disruptions. Her bottom eye teeth -- the last of the eight teeth she started cutting a few months ago -- are still coming through. Could be the teeth. We hear that many kids on beta blockers complain of bad dreams. Could be bad dreams. Older kids with cardiomyopathy wake up at night and tell their parents that their joints/legs/arms hurt. Could be the aches. Annie fights sleep tooth and nail these days, always wanting to play and KEEP GOING. Could be the Energizer Bunny Toddler Effect.
Dr. Rehbar threw in another option -- Yeah! (Kidding.) After taking a look in Annie's mouth, Dr. Rehbar noted that her tonsils are quite large. (If he had noticed this before, we didn't know it. If he hadn't noticed it before, we aren't 100% clear on why they would be enlarged now. He said infection, growth rates, and many other things could cause it.) So I guess the tonsils could be causing sleep trouble as well as possibly -- possibly -- affecting her ability to swallow solids. For now, we're putting that possibility in the wings. We'll do our best to keep better track of Annie's sleep patterns (yawn) and let the feeding therapy folks know about the tonsils. (We're meeting with the big swallowing guru here in New Hampshire on Friday and hope to have more feedback from her.)
Surprisingly, it doesn't sound like Dr. Rehbar is up in arms about Annie's aspiration of thin liquids. He said there is a lot they don't understand about swallowing and the coordination required in young children, but he feels it is a developmental thing like walking or talking. There is a huge window for acquiring the skill, apparently, and Annie is still within that timeframe. So I guess there are no worries there ... yet. (We'll just keep thickening her food as we are now.) Same for speech. We'll have her hearing tested, but as long as the hearing is fine, Dr. Rehbar is not concerned about Annie's speech ... yet. That's good to know.
I think that's about it for Boston news. I'll try and get the MRI/echo scheduled in the next couple of months and we'll meet with the feeding specialist on Friday. Then we have next week here at home before the girls and I leave for St. Louis. We'll have ten days with my parents, and a weekend in St. Louis with my brother and his family (and Scott will be joining us then, too!). We can't wait to see everyone!
Ok, so in other news ... we have a new furry addition to the family! Meet Corazon ("heart" in Spanish), who we are calling "Cora." (In a scrapbook, I have a list of names my eldest niece, Hannah, suggested when I was pregnant with Jamie. Cora was on that list. Here you go, Hannah -- 6 years later, and much furrier than you expected, but here is a Cora-dog-niece.) Annie and Jamie are in heaven, and our older dogs (14 and 9) are doing their best to accept this insult to their carefully ordered lives. Cora is a rescue pup from Texas who came up on an amazing truck(http://www.alphadogtransport.com/) full of rescue dogs from the south. Foster families, rescue groups, and adopters met the truck in an empty parking lot and met their new pups/charges. It was an amazing experience, and I told Scott he was getting a look at his future. We'll be back someday, as a foster family or helping a rescue group. It is definitely where my heart is (no pun intended to Corazon!) ... or will be, once the kids are in school full-time!
