A Promise to Update Soon ...

There is some news, here and there, about Annie. Until I sit down and gather it all together into something coherent .... here are pics!

Left on Longwood

In nearly three years of visiting Children's (thanks to prenatal echos that started when I was five or six months pregnant with Annie), I had never driven into the hospital myself. It was a typical rush-hour drive on Tuesday morning, on our way to a 9:15 appointment to check Annie's teeth and make sure everything was ok. I laughed at the GPS when I first put in the address to Children's and I was given an arrival time of less than an hour later. HAH! I just watched that estimated arrival time get later and later and later. I left the house at 7am and just made it in time for the appointment. I was very happy to hear the GPS say "Left on Longwood" at last!

Murphy's Law -- first time traveling alone and I had some excitement. Annie decided to get sick just as I was taking the Storrow Drive exit (folks around here will know what that means!) and turned a deep red as she spluttered and coughed after throwing up. Two seconds of wondering where the heck I could pull over (answer: nowhere!) and she managed to come out of it. I noticed the poor kid had red spots all around her eyes and even down her cheeks from it, though, and required a quick change of clothes before we rushed up to the dental department.

Otherwise, though ... Annie is terrific. You'd never know she went through anything last week. She is proud to show her teeth to anyone and everyone, and points to them and says "doctor." She is cranky, but I'm sure that has everything to do with the two new molars she has cut this week. Dr. Nelson saw them when we went back for a post-op visit on Tuesday morning. (Sigh. They'll be the next ones to get crowns, I suppose.) Everything looks great, according to Dr. Nelson. She did caution me that one of the molars is "iffy," explaining that they were conservative and didn't do a root canal on it. We won't know for a year or so if that was the right call, so she may still lose that one molar. From where we started this dental adventure -- being told all of her baby teeth had to be extracted! -- losing one molar seems pretty acceptable and minor. And, as you can see from the photos, the chip on her front tooth is no longer an issue!

So ... back to working on her feeding, chewing and swallowing. We are pretty tired of the bottle thing around here, and ready to get rid of them! I will be calling Annie's ENT, Dr. Rahbar, this week to see where we are. We haven't checked in with him since the MRI (the sometimes-a-dimple-is-just-a-dimple MRI) and need to know if another swallow study should be scheduled. Meanwhile, Annie continues to receive speech and physical therapy weekly. It seems like she is making progress ... it is just so, so slow. Still, progress is progress and we're happy for it. She is a funny, funny kid! She thanks me every time I change a dirty diaper (not wet, just dirty gets a "yucka! tank oooo!"), says "Ta Da" about twenty times each day, and thinks all the world is her stage.

Photos from Dental Day

So Good!

Everything went so well that we are already home! Annie has lips that would make Angelina Jolie proud and some beautiful new front teeth. She did really well waking up from anesthesia (didn't cry once and usually she is extremely grumpy and inconsolable), even telling the nurse "thank you" for her stickers and blowing her a kiss goodbye. This was all done with a rather zoned expression on her face, of course, but we'll take it!

Surgery took exactly as long as they told us -- Dr. Nelson came out to us in the surgical waiting area about 11am. (Annie had gone back at 7:30am.) She said there were no surprises and they only had to do one "baby" root canal on one of her molars.

Once again we are telling ourselves it's her last sedation ... we're cautiously optimistic that it will hold true this time! I'll post some photos as soon as we wake up from a much-needed afternoon family nap. Annie woke up at 2:30 this morning wanting a bottle. It wasn't like last time, but she kept asking for it and STAYED AWAKE from 2:30 on. Needless to say, we did not need the alarm when it went off at 4am and had no trouble getting on the road by 4:45am. So it has been a long day .... So, so glad it is OVER!

Thanks for checking on our girl once again and keeping her in your thoughts and prayers.
Love, Ross

Surgery Waiting Area

Annie is in surgery now. She was a trooper, although the operating room was large and scary and overwhelming. She never cried, but the corners of her mouth were turned down in a big frown once we walked into the room. Still, she accepted the oxygen/anesthesia mask without complaint and drifted off to sleep. As always, all the docs and nurses commented on how easygoing and compliant she is, especially for a two year old.

We were told to expect 2 1/2 hours for the actual dental work, plus about an hour of anesthesia time. Hopefully, she'll be all done by 11am this morning or so. That should give her plenty of time to wake up and get the ok to go home today.

Oh, and it turns out the work will more than likely include fixing the huge chip on her front tooth! She's even going to look different after all this .....

More later .... (Apparently Children's Hospital as unblocked blogger from their WiFi -- so I actually can update while we're here. Hooray! Something to do!)

Surgery Scheduled

Annie's dental adventure is scheduled for 3/31. We don't know yet if they are planning on day surgery or keeping us overnight. I have been terrible about posting, but I am getting that info up here at the very least. More to come ....

Meanwhile, this is Annie last week when she didn't get to swim during Jamie's swim class. This photo says it all, doesn't it? I paid big time for not getting Annie in the pool, too!

On to Jamie's SIXTH birthday party this Saturday (actual b-day is 3/25). Any good wishes you can send on the 31st will be appreciated greatly! Thanks, Ross

News You Can Sink Your Teeth Into!

Well, I started to get this entry done and then an old friend from Wales gave me a call. Now it's time to get the girls in bed .... The quick version: good day in Boston yesterday!!! Heart numbers about the same (despite her unhappiness during the echo, as you can see in the photo above), so we're happy with that. The dentist -- fantastic -- feels as though it will be a lot of work and we just caught it at a crucial time, but SHE CAN SAVE ALL OF ANNIE'S TEETH!!!! Yes, that's right -- she is hopeful that she won't have to pull out a single one. The tears started when Annie was an angel for the exam, and they didn't stop for the rest of the day. I'm not ashamed to admit that!!

More details later, but right now the crazy girls need to go to sleep. Thank you, everyone, for checking in on our girl!! We can't believe the good news today. This girl ... she keeps the surprises coming, one way or another.

Hugs,

Ross

Children's Cardiomyopathy Foundation Slideshow

Annie is one of the first children -- in the red and white check shirt. She was only 10 months old!

Oh, Annie ... My Sweet, Crazy Girl ... Yet Another Hill

I have been planning to update the blog since before Christmas, but the only news I really had to relate was the same old, same old of life with a two year old. Well, not any two year old. Annie is a force unto herself! She is funny, engaging, crazy, ill-tempered, goofy, bright -- and that was all in the last five minutes.

So, in the meantime, we've had a little something come up. Once again, I am turning to a blog entry to help me make some sense of it. I always feel better after I order my thoughts (somewhat ordered -- harder to do when Annie is awake, as she is now) and get them out on the blog. I would venture to guess that the ethernet-era feeling of being connected to everyone who worries about Annie along with us has something to do with that, too.

I know it's not heart-related, but I am still feeling whalloped. Maybe it's because we are not in touch with the overwhelming fear we felt initially with her heart condition, or maybe we have learned to live with a constant "status quo" level of worry while forgetting to arm ourselves against the possibililty of new challenges. For whatever reason, realized or unrealized, my heart isn't listening to my brain when it repeats the "it's not a heart transplant" mantra that has gotten us through so many of Annie's other issues. I am feeling done. Wiped out. I can't wrap my brain around it ....

We have been taking Annie to the dentist regularly since she was just a year old. With a heart condition, it is even more important that we stay on top of anything going on in her mouth and guard against infections that could enter her bloodstream and impact her heart. We saw the dentist -- who is Harvard- and Boston Children's-trained -- in September of last year and he noted the start of some decay on one of Annie's teeth. He wanted to see Annie back in four months instead of six so we could stay on top of it. We have known that decay may be an issue for Annie all along. She doesn't swallow properly, so her milk and anything else tends to sit in her mouth for long periods. The medications compound that problem, as does our need to thicken her milk with rice cereal. And if that isn't enough, the fact that she is not supposed to have any thin liquids, including water, is the icing on top of this dental conundrum.

Meanwhile, Annie chipped one of her front teeth shortly before her second birthday. With all of the climbing, carousing, and general mischief-making that is the backdrop for Annie's life, I commented to folks that I really was quite proud that we got Annie to her second birthday with "only" a chipped tooth -- no stitches or broken bones or ER visits for accidents. (Yes, I like to live life dangerously and taunt fate. Apparently.) Lately, though, the edge of the chip seemed to be quite sharp and I had decided to call the dentist this week to see if we should come in and have it smoothed off. That made me think about Annie's teeth in general, especially since we have been talking about her jaw construction a lot lately with the Speech Therapist and Physical Therapist. (Annie's mouth just doesn't open very wide.) So I finally took a good look ... and good grief. I knew we had a problem.

It looked like she had crazy build-up on her back molars and I could feel spots on her front, bottom teeth that didn't seem quite right to me either. It feels like all this had happened to her teeth overnight -- it's not like I don't see her front teeth constantly! The spots aren't dark, though, and who knows? Well, my brain thinks it knows and I am kicking myself that we didn't brush better, check more, SOMETHING! Still, I figured (and hoped) we were headed to a serious cleaning and maybe a filling or two ... nothing drastic.

We were able to get in with Jamie's dentist but not the dentist who has seen Annie in the past. We chatted about the Catch-22 of Annie's feeding/nutrition versus dental health existence. After a few minutes of chatting, she took a good look in Annie's mouth. Yep, all cavities. Moderate to severe decay. Everything -- even the x-rays that will tell us more about what we are dealing with -- will have to be done under ... ugh ... general anesthesia. The repairs on the cavities on her front teeth (top and bottom) are tricky because they are at the gumline, so it's more than likely they will have to pull all of those baby teeth. The molars will be around until she is ten years old or so, but they can't repair them -- they are too far gone. So our little two year old is going to get four silver crowns. (As to it happening so quickly -- there is some thought that children develop the bacteria that cause cavities sometime between 18 months and 24 months, so that might be why it happened so suddenly and took everyone -- even the dentist -- by surprise.)

We are being referred to the Dental Department at Children's Hospital in Boston because, of course, there is no other place anyone is willing to sedate Annie. (Obviously, we're totally on board with that!) The dentist who saw Annie trained under the head of the department, so she is referring us to her. We don't know how quickly we will be able to get an appointment, but we will know more in about a week or so (hopefully). I'll call Dr. Smoot today and chat with her about this ... stuff.

Huh. I do feel a bit better. It helps to keep the brain occupied and focused a bit. Of course, I have saved ELEVEN (yes, I really counted) items from being chewed by Cora while I was writing this and I now have a wee bit of Play-Doh spread across the dining room table .... But that's just a normal 10 minutes around here anyway! (I am living the book/movie Marley and Me -- holy cow, these labs like to CHEW everything!!)

On the bright side: IT'S NOT HER HEART. She can live without teeth, not so much her heart. She's still too young to know what's coming. She won't be bothered about how she looks without teeth for four years. Hey, it's not like she chews anything anyway, right?!? Book club tonight, where laughs and a good time are guaranteed. Puppy fostering this weekend that will keep me too busy to think about it very much. Ok, I'm out ....

On the down side: I'm sure you can ascertain the negatives on your own. To those obvious ones, I have two more to add. Item number 12 did not survive Cora and I just had to throw a lovely pair of shoes away. The formatting on blogger is giving me grief that I just don't need right now. Grrrr!!!

As always, thank you for your thoughts and prayers for Annie. Throw in one or two for her parents' sanity, would you? Thanks.

Photos, top to bottom: Christmas, Jamie holding Annie one time after she had fallen, Annie with one of the rescue pups we had picked up off the transport truck from the south, Cora kissing Annie, Jamie on Christmas morning, Annie with a barrette -- a rare sighting!, Mam let Annie play in the sink at the hotel!, Jamie, What else would you do with a blanket besides wrap it around your head?, "I took two minutes to send an e-mail and this is all my two year old could do?!?", and Annie's first adventure bowling (ten pin -- great for the kids!).

And now ... See? We brush her teeth ... er, let the Kindergartner brush her teeth ... in hindsight, hmmm .... :-) (Or, alternate title: A brief second of sibling love. Brief, I tell you, brief.)

Sometimes, Annie even dresses up to brush her teeth. Can she rock the diaper/leg warmers look or what?!?

Hospital Update

Things have been a bit crazy, sorry! We were in Boston on Friday and then had to come home and get ready for an onslaught of puppies. There were 14 dogs in my house Saturday night! We were down to 10 Sunday night, and now it's a manageable five. Ahhhh .....

No excuse for not updating on Annie's day at Children's, though. Sorry!

The short and sweet of it is that Annie's dimple is ... just a dimple! That's not an official report, of course, but what they told us unofficially after the MRI. As for the echo ... well, she hasn't leapt into perfect yet but we'll still take it. Her measurements were marginally worse, with one measurement now falling out of the normal range, but it could all be in the noise (as they say). I can't say it wasn't disappointing -- actually, incredibly hard -- to see those numbers plotted out further away from the median line than last time. It felt like a big letdown. I had so hoped that we would see another great leap in everything, but it wasn't to be. Still, compared to where she was ... we are still a long, long way off from that, and that's a good thing.

Dr. Smoot did tell us that it felt like the condition was telling us to keep paying attention to it. Yuck. I want to ignore it, forget it, move on ...! On the positive side, though, she didn't feel like we needed to see her again until March and that was nice to hear. I know that if she were concerned about the numbers in any way, we would be put on a much shorter leash and be back again before the end of the year.

And another really, really great thing (something I didn't really think about until we were all done): we now have nothing on the horizon that would require sedation!! Annie has entered the lovely age of the entertainable-by-video crowd. We have some wonderful videos featuring sign language (Signing Time -- they are terrific) and Annie loves them. And we love them because the signing has been a huge help in communicating with Annie -- entertaining and helpful, so they're win-win. Next stage will be the bribeable stage, something I have heard quite a bit from other parents on the cardiomyopathy list serve. I'm not looking forward to the negotiations when she's a teenager, that's for sure! (Swapping access to the car keys in exchange for taking meds and undergoing echos seems ... ironic? Counterproductive? The mind spins ....) And I should clarify that all of this assumes we won't have anything else from the ENT side of things that will require sedation. And who knows? But here's hoping!

The other short and sweet of it ... Annie is a professional patient. She sat on the bed in the prep room, put her finger out for the pulse ox band, put her arm out for the blood pressure cuff, and lifted up her shirt for the stethoscope. Sad, but adorable. After the prep, I was able to go into the scanning room with her (I played the "I gave birth to her" card when it came time to decide who was going back with her) and stay with her until she was asleep. (Every department is different, apparently. No happy meds beforehand this time, but a lovely gas that she was more than happy to breathe. EVERYONE comments on how cooperative and easygoing Annie is. Apparently, they weren't expecting her to go for the mask at all, but she did. Several deep breaths, and we were able to lay her down and she was out.

The not-so-sweet of it was that Annie's heart is doing well now ... so she has an appetite ... and she expects us to give her a bottle each and every time she demands one ... especially at 3:30am. Oh my gosh ... it was MISERABLE! She was sad and mad in turns, but both reactions were heartwrenching. We told her we didn't have any more milk and had to go to the store, but there was nothing that was going to console her. As a result, we were all awake from 4am on (including Jamie). It was quite a start to the day. I was so close to caving in and giving her a bottle and just skipping the whole thing .... Poor girlie. When she woke up in the recovery room, we were given the go-ahead to give her a bottle pretty quickly. She was so groggy that she hardly ate anything, so we started to put it away. She quickly grabbed it back and held it close to her. There was no way she was going to risk another milk shortage or bottle shortage or whatever had happened to keep her mean parents from giving her a bottle the night before.

As always, a day in Boston takes a village for us ... our village. Thank you, thank you, thank you Kate R. for getting up BEFORE the crack of dawn so we could drop Jamie off. And thank you for getting her to school, too. ("Where does she go to school? Oh yeah, here. Duh.") And the oft-traveled road of gratitude ... thank you Nikki, Hannah, and Parker for picking Jamie up at school and keeping her all afternoon! Scott and Annie and I came home and snuck in a nap before Scott picked Jamie up, making all of us much happier humans. Thank you!!! I don't know what we would do without the amazing friends and moms we have in our lives here in New Hampshire.

(Writer's Note: No puppies were injured in the making of the photos for this blog. That particular pup has gone on to a lovely home and suffered no injuries whatsoever as a result of Annie's exuberant puppy care.)

Yes, She is TWO! And Boston Tomorrow ....

Yes, Annie turned two last Sunday! It was a quiet day with close friends -- nothing like last year's blowout. We all had fun despite the chilly weather, and we were so happy to usher in Annie's birthday with our dear friends. It was quite a weekend, since it started with Halloween on Friday. Annie refused to wear her costume (a flower fairy) and screamed and pulled at it anytime she had it on. I finally realized that she wanted to be just like Jamie (duh) and be an owl. I solved the problem by digging out some photos of Jamie when she wore the flower fairy costume four years ago. Annie held on to the pictures of "Sisty" in the costume and that seemed to make it all ok.

From Halloween to birthday to a week full of miscellaneous stuff ... now, suddenly, it's time to head for Boston again. Annie is scheduled for her sedated MRI and echo tomorrow morning at Children's. We'll be dropping Jamie off at the crack of dawn (thank you Kate and family!) and good friends will pick her up from school (thank you Nikki and family!!) if we aren't back in time. Yes, that's right -- we don't have to spend the night. Hooray! Hopefully all will go well and we will be in and out of the hospital in record time. I do hope to connect with Dr. Smoot, although we do not have an official appointment scheduled. We will page her after the echo is completed and hope to see her before we leave. We will be on pins and needles waiting to hear the echo results. (Last time, a cardiology fellow delivered the news but we were able to see Dr. Smoot the next morning on the cardiac floor. Since we won't be admitted this time, I pushed to have some way to connect with her this time -- as always, she was more than willing to help out!)

We'll have plenty of distractions once we're back home ... on Saturday I'll be meeting 18 puppies coming up from Texas and Tennessee. Many of them will be staying for a couple of nights, and at least two of them will be staying for awhile. I love being able to do something in dog rescue again! And the girls love having all of the puppies in their lives. I'll post new pics when I have them. :-)

Postponed!

Annie's cough has been getting worse and worse. We have made the decision with Boston docs that it is not a good idea to go through sedation with a breathing tube tomorrow. So far, we are scheduled for Nov. 7 instead, but that is only if we can get Annie's horrible cough under control. I am waiting to hear from the ENT and from our NP about what we're going to do to track down the cause of the cough and what we're going to try and do to treat it. Stay tuned!

Thanks!
Ross

Photos & A Bit of News

Hiya --

We are enjoying a beautiful fall here in New Hampshire! Jamie is in full-swing with kindergarten, which has brought me back to the world of Monday-Friday. Sadly, for someone with ADD like me, it's a good thing. The structure helps me out a bit! :-) The major downside is that Annie thinks she should be going to school, too. Every few days or so, I need to talk to someone at Jamie's school (I do a tiny bit of freelance work for them). On those days, Annie gets to get out of the car with Jamie and me and goes into the classroom. The amazing teachers at BYPC don't miss a beat -- they always put something in front of Annie or help her get involved in some way. So, it's near disaster when I have to pull her away from a puzzle or art project. It's only mildly less disastrous on the days when Annie DOESN'T get out of the car with Jamie. She still lets her displeasure be known on those days, believe me! (As a side note: I am not ready for Annie to go to school at all! I won't be putting her in preschool anytime soon, if I can help it!)

Nothing has changed medically -- we have not seen a cardiologist since April (hard to believe) and Annie is not swallowing solids yet. The MRI has been scheduled for this Tuesday, and they are planning an echo at the same time (while she is sedated and STILL). Annie has been coughing like crazy lately, though, so I am going to call her nurse practitioner tomorrow and just check-in with her. I want to make sure Annie should go forward with sedation, tubation, and all the rest of it. As much as I hate the idea of postponing the echo (the familiar butterflies are in residence in my stomach as I wonder if there are any surprises lurking ...), I want to make sure Annie is healthy enough for it. She sounds terrible, and we don't know what to think. Is it a cold of some sort? Is it aspiration-related? We don't know! If it were just the MRI, I would postpone it without a second thought ... but I want that echo! (I always say it's the things you don't worry about that jump up and bite you on the a**, so watch the MRI bring back some interesting results .... LOL)

Mis-Titled Post

The original title for this post was "A Short Post is Better Than No Post." Then I actually got to writing, and, well ... not so short after all!

I keep framing grandiose blogs in my mind (a la my friend Teresa, who is wonderful at keeping both her blog AND her scrapbooks updated ... how DOES she do it?), but I never sit down to get them written. So here's the down and dirty of life in the Norwood/Setzler household!

Medically, we are waiting to get the MRI scheduled. I expect that will happen very soon. I finally spoke with Annie's ped. card. in Boston this week (everyone knows her name by now, right? Dr. Smoot). She assumed that the ENT would want a cardiac clearance before deepening Annie's sedatin for the MRI (an echo while she's just loopy, basically). Dr. Smoot sent a note to the ENT that it wasn't necessary -- based upon Annie's last echo, they don't need to perform an echo before they deepen Annie's sedation for the MRI. Also, she said we shouldn't expect to stay overnight at Children's again. Hooray!

Hearing things like this makes me feel really, really good about how far Annie's heart has come in the past 19 months or so (of course!) ... but -- I hate this -- it's so hard to give over to optimism completely. I hope everyone can understand that! I just had this conversation with my sister while we were in St. Louis visiting everyone. She seemed to treat Annie as, well, "cured." I felt like the big downer when I cautioned her about where we are and what the future may hold for Annie. (I may have been a bit sensitive already -- sorry, Lori -- thanks to several folks who referred to Annie as cured on this trip.) Yes, I am a downer in this aspect. I'm sorry. I don't want to be. But, I read the stories and talk to the parents on the Children's Cardiomyopathy Foundation list serve. I know how unpredictable this disease is. I deal with Annie's medications each and every day. I know that Annie will be affected by this diagnosis for the rest of her life, one way or another (no private health insurance for her after she is off of our insurance -- she will have to go to a big company that does not have pre-existing condition clauses). And I know we will never stop worrying, because there is no "cured" when it comes to cardiomyopathy.

Ok, enough depressing stuff. Annie is doing great and we are -- as always -- so, so grateful. The phrase that comes into my mind most often lately is "I'm having fun being Annie's Mom." (Insert deep breath.) That is a fantastic thing to be able to say, let alone feel. We were so wrapped up in medical stuff, doctors' appointments, and worrying for most of her life that just having fun with her and enjoying her craziness is a revelation.

Annie is a riot. I tell folks that she is destined to be a comedian or a dictator. She is funny and loves to laugh! She knows what she wants, and she finagles ways to get it. If her sister does it, she has to do it ... EXACTLY the same. And, well, like any parent I am struggling to put into words the little personality that is emerging with this curious, active, unaware-of-any-medical-hoopla-just-let-me-dispense-my-own-medicine-no-big-deal girl. I love her. She makes me laugh every day. If I could videotape her entire life, I would. Seriously.

Jamie ... I would say the same thing about videotaping her life. She is officially 5 1/2 now ("Do I get presents for my half birthday?" Nice try, kid!) and in kindergarten. She goes every day from 8:30 until 2:00. (I miss her!) She loves it! (I miss her!) She is the tallest kid in the class by far (not from my genes!), loves to help the younger kids in her multi-age classroom, and surprises me every day in one way or another. She gives Annie crazy hugs and kisses first thing in the morning, but the end of the day brings a meddling little sister who she doesn't find quite as appealing. Ah, the birth of sibling rivalry. As a spectator, it's interesting to watch. As a mom ... STOP SCREAMING AT YOUR SISTER!!!!!!!!!! SCREAMING DOESN'T HELP!!!! SHE'S ONLY TWO! (Ooops ... was I screaming?)

And so life goes on .... Cora (the black lab cross) joined our family on August 7, and the girls adore her. Unexpectedly, we lost my Tasse girl on August 27. She was 14 and had a great life, but I hate the fact that I wasn't here for her in the end (I was in St. Louis when things came to a head). Scott took good care of her and loved her, but she was my girl through and through. I had her for five years before I got married, four years of that it was just her and I. Running. Going to Barton Springs. Playing ball. I miss her.

The fall color is really coming out here in NH. Unfortunately, we're having a rather rainy couple of days. Still, it's beautiful. I hope everyone is enjoying their fall, wherever they are! Warmly, Ross

Wily Coyote I Am Not

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!