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!

GULP!

Gulp! I win the worst-blogger-ever award. Just as I was thinking I better sign off on the blog, my parents arrived for a visit. Before I had a chance to float the idea of the blog's demise, Mom and Dad told me how much they hoped I would keep it up. (I seriously think they are the only ones left who are reading the blog, now that I have alienated everyone with my lack of updates!) So here you go, Mom & Dad ... and anyone else who hung in during the Great Blogging Drought of 2008. (And here are a whole bunch of pics to catch you up. I need new ones of Annie, though, since she has very short hair now!)

And GULP ... as in, Annie had her third swallow study on Monday in Boston. After spending a good thirty minutes packing a "wide variety" of foods for her to try in the study (per their instructions), another thirty minutes packing Jamie's overnight bag (and countless hours HEARING about the sleepover!), dropping Jamie off, picking Scott up at work, driving to Boston ... we were in the actual test for about 10 minutes. And EIGHT minutes of that was prep time. It took them two seconds of watching Annie swallow a thin (i.e. unthickened, regular 'ole, plain jane fluid) liquid to see her aspirate. Clearly. That was it -- all done. We don't know what that means for us moving forward just yet, but we are back in Boston next Tuesday to follow-up with the ENT. Stay tuned!

Otherwise, we're just having a regular, pretty doctor-free summer. We haven't seen a cardiologist since April, which is crazy. I'm getting a bit anxious to get something on the books, but in general we feel pretty confident that everything is going well. Annie's energy is, well, boundless. Her appetite is good, her weight gain is great ... all cardiac indicators seem to tell us that she is stellar on that end. At her 18 month checkup earlier this summer, the Super Fabulous Vicki had tears in her eyes more than once, but they were happy tears. Annie is now above the 25th percentile for weight and between the 50th and 75th percentiles for height. (Vicki said she plotted it twice because she couldn't believe it!) What a difference a year makes ....

I hope everyone is having an equally gratifying summer and I promise to be a better blogger. Thanks for checking in on our girl and our family!

The News!

We are home and I am just about out of the post-hospital fog/readjustment to life. Children's has a lovely new block on their guest network that doesn't allow me to get to Blogger at all, so I wasn't able to update as things were happening. (Thanks to Nikki who not only updated the blog for me but also had our high-energy Jamie for almost two days!! It is such a relief not to worry about J while we're at Children's ... and I guess she really is becoming a big kid since she has her first sleepover under her belt!) At any rate, here goes ....

Annie was scheduled for the OR at 10:30, but wasn't actually taken upstairs to pre-op until 11:45 or so. (We were told that the case ahead of ours in the OR was taking longer than expected.) I had hoped to go back to the OR with Annie, but they gave her some happy medicine and then "tested" her separation tolerance by walking away from us in the pre-op area. Our drunk little camper couldn't have cared less when the anesthesiologist (translation: stranger!) carried her away, so I wasn't invited to go back with them. Experience-wise, I'll take this one over the cardiac cath last year anytime. As hard as it was to hand her over this go-round, it definitely was much harder last year when she was a tiny, tiny baby and the procedure was invasive. I had never been apart from Annie before the cath, but now that she is older that's not the case. (And it would be much, much different if she would be more tolerant of babysitters, darnit!) But I digress ....

In the end, we were told to expect the entire procedure to take about two hours. They planned to do the sedated echo first so that they could confirm that nothing wonky was going on with her heart. They would then deepen her sedation for the bronchoscopy and endoscopy, which required placing a breathing tube. The wait was not bad at all (Children's is REALLY set up for this, believe me!), although different than the wait outside the cath lab (updates are a little more plentiful, it's a much smaller waiting room and group of people, and it's a lot more intense in the cath lab in general). We were told by 12:45 that both the echo and the bronchoscopy were done and that they had just begun the endoscopy. The GI (who did the endoscopy) was the only doc who came out and found us in the waiting area, and she was with us by 1:30. She was able to tell us that Annie was out of the OR, awake, and doing great. After all of the info they have to give you pre-sedation -- especially when your child has a cardiac condition and every comment includes something about the risk to her heart -- that bit of news felt momentous. We were taken into see Annie by about 1:45, only about 90 minutes from the time we handed her over to the docs.

I, of course, got choked up when we walked in the room and saw Annie in her bed, sleeping. Scott told me a little while later that he had, as well. No matter how well you think you're coping with everything, there is something about seeing your child alive and well on the other side of a procedure or surgery, I guess. (The other odd thing was that we both thought she looked just like Jamie when we first saw her! Something about the way she was sleeping and the way her hair was ... I don't know, it was just strange.) The short version: super agitated when she woke up, finally got a bit of pain meds, settled down, waited for a room upstairs, eventually decided that we would go to the cardiac floor ... finally got into our room on good ole 8 east at about 5pm.

We had heard from the GI that she didn't find anything worrisome (she was looking for any effects from Annie's reflux) and didn't expect anything untoward to come back on the biopsies that she had taken. She gave us a lovely printout with photos of Annie's esophagus and stomach. (Scrapbook, anyone? That's one scrapbook theme I've never seen!) The ENT came in at some point and told us that he had not found a laryngeal cleft in Annie's throat, nor anything else that would require surgical repair. Hooray, hooray, hooray! And ... what now? Why won't this kid swallow solids? And why does she aspirate thin liquids?? Lacking structural issues (and this procedure was the last box to check-off on that), I think we're now firmly in the realm of developmental\behavioral. More pressure for Annie's speech/swallow therapist, I guess!

Meanwhile, an echo tech had done Annie's sedated echo ... the first echo we haven't been sitting right there to see (I say that as if we would know if something were wrong ... but we kinda would, size-wise at least) and we didn't exactly have an appointment with Dr. Smoot or anything. After pushing a bit, we were told that the cardiology fellow had been paged and would come see us. Understandably, we were interested in those echo results most of all and I didn't want to wait to get them. Soooo, the cardiology fellow came by sometime while we were in the recovery area. Obviously, it was a doc we had never met before, but he had reviewed Annie's echo and was able to tell us briefly about it.

Here's how it went: Dr. Muniz introduced himself, chatted a bit, and then told us that he had taken a look at Annie's echo. He then said her heart was normal. I clarified/corrected that he meant her Ejection Fraction was normal. He said noooo, the SIZE WAS NORMAL. I know Scott and I looked at each other in disbelief, and I believe a phrase starting with "holy" and ending with a four letter word escaped my mouth. We asked if he was sure and he said yes, that it had measured NORMAL. This was huge (no pun intended) for many reasons -- more on that later. Dr. Muniz did say that he had looked at the actual echo images and thought immediately that Annie's heart was dilated (enlarged), but then saw the report with the measurements and they put it in the normal range. His comments about his perception (and the fact that we didn't know him at all ... or was it more that we are so cautious now?) were enough to give us some doubt about the reality of the results, but we still were feeling pretty good. :-)

In the room Wednesday night, we settled in and sent Scott home to NH to pick up Jamie and take care of the pups. Annie slept a little more than usual, but she was back to her old self whenever she was awake. I managed to badger our nurse into taking out her IV (which hadn't been connected to anything since the recovery room) and that's the first time I have EVER won that battle! I was more persistent than usual, perhaps, since Annie absolutely hated it -- unlike last time when it didn't seem to phase her a bit. It helped that they had put the IV into Annie's foot and then immobilized it totally ... our nurse saw poor Annie try and walk with it and stumble, and that's when she gave in and took it out.

Annie was out (and I mean OUT) for the night by about ten. I managed finally to fall asleep about 20 minutes before a vital check (Murphy's Law) at midnight. They took vitals again at 2am, and then at 4am I woke up to the nurse attaching all kinds of leads to Annie's chest. She told me that the monitor had shown an irregular heartbeat and that she needed to do an EKG just to be safe. Of course, that woke me up rather quickly. (All I could think was that we just had gotten such good news ... now was the other shoe falling??) Luckily, Annie slept soundly through it all!

Thursday morning I e-mailed Dr. Smoot to let her know we were in the hospital and hoped to see her, if at all possible. Later our day nurse paged her for us as well. She popped in late morning and ... confirmed the good news!!!! At this point, ALL OF ANNIE'S HEART MEASUREMENTS ARE IN THE NORMAL RANGE! Not only is her ejection fraction (amount of blood pumped out with each contraction of the heart muscle) in the normal range -- as it has been since last October -- but also the size and shortening fraction (another method of evaluating the heart's function) have entered the normal range now. (The next post will be scanned images of the charts for both of these ... you'll be able to see exactly how far Annie's "big" heart has come!) Dr. Smoot is VERY encouraged by this ... as she said, it's great to get the ejection fraction in normal range, but as long as the heart/left ventricle is still dilated (enlarged) the "physics" of it just aren't there yet. (I think she meant that as long as the left ventricle was still enlarged, it is possible to anticipate another drop in function, to put it simply.) So having both the function AND size in the normal range now gives everyone more hope that Annie's heart is truly, truly recovering from whatever caused the weakening in the first place.

I asked Dr. Smoot about the irregular heart scare we had in the middle of the night. She was able to review the info and told us the EKG was normal and that she thought the problem had been with the settings on Annie's heart monitor. Phew!

So, the plan moving forward ... we don't have to go back to see Dr. Smoot for 4 - 6 months. (Strange, good, and worrisome ... all at the same time.) We began weaning Annie off of Lasix (the diuretic prescribed to help lighten the load on her heart) today, planning to have her off of it completely by the end of May. Dr. Smoot plans to take Annie off of her Digoxin sometime after we see her next. We expect that Annie will remain on her other meds (Beta blocker and ACE inhibitor) much longer. The ACE inhibitor in particular has been shown to offer long-term benefit, so Annie can expect to take it through High School! The Prevacid we hope to cut out soon, since her reflux was medication-related.

Is Annie cured? No, not at all. There is no cure for cardiomyopathy. The only given for cardiomyopathy, I think, is the variability of its course and its outcomes. Everyone is cautious to tell us that many kids can do well for some period of time, only to suddenly and inexplicably change course for the worse. So we are not out of the woods ... and Scott was quick to remind me of the roller coaster we went through when I was pregnant with Annie. (Thanks, hon. I managed to block that out for a bit.) Still, he's right. We have had good news before, only to be whalloped later on. It makes me much more protective of my responses and my reactions. We are happy -- so, so happy -- with the direction Annie's heart has gone and the fact that she is so stable and healthy now. With caution, we are elated and only hope that things will continue to go in this positive direction. And perhaps the past roller coaster has taught us -- to take a silver lining -- that we can handle whatever comes our way. I hope so! And today, what is coming our way is a crazy, happy toddler who can't swallow solids or speak quite yet, but who can do just about anything else! And she is here and healthy and we are grateful beyond words. Beyond words.

Medically speaking, the docs talk about Annie remaining stable (as she is now heart function-wise) for at least two years before we start talking about her cardiomyopathy being resolved. Yes, two YEARS. Even then ... well, I don't want to go there. I'll file that away with the risk of Jamie developing cardiomyopathy sometime in her life. (The file folder would be labeled "Makes Me Nauseous to Think About.") Needless to say, we'll worry forever ... more than the normal parental worry, I guess. For now, the most amazing thing to me is how long we can go before checking back in with a cardiologist and the fact that Annie has no restrictions on her life! If you've seen our videos in previous posts, you may have an inkling of how hard it would be to impose any restrictions (!!!) on this girl. She is on the go ... and we're happy to follow.

Thank you everyone, once again, for checking in on us and our girl. I was so disappointed that I couldn't update the blog while we were in the hospital, especially once we received such amazing, good news. I wanted to share it with all of you who have pulled for Annie and for us!

Annie, our sweet girl, I can't wait to see what you are going to do with the life that has been given to you.

Update

Nikki here just giving a quick update on our sweet little Annie.  Ross is unable to access the blog site from the hospital but wanted to be sure you all knew the scoop.

Annie is out of surgery, awake and happy.  EVERYTHING the doctors reported was NORMAL, including the size of Annie's heart!  In fact, in the world of cardio, Annie is considered completely stable!

All around great, great news and I'm sure Ross can't wait to share the details.

Another Eating Adventure

Daily Occurrence

Not always in a ballet outfit ....


She didn't fall off the table at the end, by the way. She recovered herself quite well before I even got to her, as she usually does. (Sorry, Mom, I know this will give you heart palpitations.)

Pictures

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.

Hannah!

If you are in the New Hampshire area and have access to WMUR Channel 12, our very own sweet, smart, artistic, fabulous Hannah is going to be featured on the 5 o'clock news either tomorrow (Wed.) or Thursday. Hannah and Jamie have been best friends for just about their entire lives, and I consider myself lucky a million times over to have Hannah's mom, Nikki, in my life. Nikki has been incredible for me through our journey with Annie ... and in the middle of it all, her amazing Hannah was diagnosed with Juvenile Rheumatoid Arthritis. Hannah and her family now visit Children's in Boston regularly, and we have even managed to pass through on the same day at one point.

We are so, so hopeful -- along with everyone who loves Hannah -- that the newest medication is making the difference in turning Hannah's disease around. It has been a tough road for all of them, ESPECIALLY since the latest med has to be injected weekly by Nikki. Nikki's strength and fortitude as a mother amaze me constantly! (Nikki and I comment often upon the craziness that life has dealt us -- that we have become such incredible friends and we both have kids who are ... giving us a run for our money, shall we say?) Nikki often prefaces some news about Hannah with some nonsense about it "not being a heart problem" or "not what you have faced with Annie." This experience has taught me another thing -- and that is that there is no degree to worrying about your children. Worry is worry when it comes to our little guys, and there is no sliding scale. We deal with what we are dealt; but, more importantly, we are all stronger than we give ourselves credit for being.

We will be joining the Thompson family in supporting Hannah and arthritis research at the Arthritis Walk on May 10 (https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=260885&lis=1&kntae260885=89AC9D7042B64A49B61AD7055A5DB392&supId=204154983). You can read Hannah's story on their blog at http://www.hannahhugs.blogspot.com/. Hannah's dad, Michael, heard from the arthritis folks that they were having a hard time getting the message out about arthritis and the walk. He promptly contacted the local news, and the news story that will run this week is a result of his efforts. (Go, Michael! And being the marketing person that I am, I have to help in whatever small way I can!) So Tivo, DVR, set the VCR, whatever, but catch beautiful Hannah and her amazing family sharing their story on the news!