Feelings

Yesterday evening, after I got home, Hallie was playing with Sharon and having a blast. She turned to Sharon and said to her: "Mommy, I feel HAPPY!"

We thought that was great. For Hallie to express herself using language is alone a huge thing. Remember, this is a kid who, up until recently only used language to label or describe things she saw (admittedly in ever more complicated ways, so we've heard some "It's dark outside" and not just "Look! It's Sam Wiggle. Sam is Yellow.") or to demand stuff of us ("Hallie wants Pirate Booty!" or "Watch Diego Saves Christmas" sorts of constructions).

But even more impressive is that she is expressing abstract feelings: we've heard "I feel cold" a few times but 'cold' is a fairly concrete concept. "Happy" is not. Happy is an abstraction and happy is what Hallie was feeling when Sharon was playing with her.

Even more significant was an exchange that took place a few minutes later. Lea was in the living room and got upset about something. Hallie went over to Lea, who had begun to fuss and cry a bit and said to us, "Lea feeling sad." Then she hugged and kissed Lea and turned to us and said, "Lea feeling happy." Hallie totally got that a. crying indicates sadness and that b. hugs, kisses and cuddles make you feel happy.

This is HUGE. Remember, Hallie used to laugh when Lea was crying. We weren't sure why, but we were pretty convinced that Hallie was fairly confused about emotions and wasn't making the connection between crying and feeling sad and needing comfort when it concerned anyone but herself: she was pretty clear about seeking out comfort if she was upset but was unable to understand that this applied to others, too. At least where Lea is concerned, that hurdle seems to have been surmounted (though this still requires generalization).

What does all this mean? Hallie is developing the ever-important Theory of Mind. If you are a parent of a child on the spectrum, you know precisely how significant this is. If not, here's a good place for more information about why Theory of Mind is so essential to typical development and interacting in the universe. Basically, what it comes down to is this: if Hallie can understand that other people behave in certain ways because they feel particular emotions (in other words, that other people also cry when they feel bad and smile when they feel happy), she will be able to form meaningful connections with them, predict their desires, understand that their desires are not always the same as her own, etcetera etcetra. In other words, Theory of Mind is an essential precursor to friendship.

And there is no doubt in my mind (theoretical or otherwise) that Lea is Hallie's best friend and that Hallie cares a great deal for Lea. That she can take into account how Lea feels and want to make her feel better makes me and Sharon feel very, very happy.

How to Make a Rainy Day Feel Full of Sunshine

Yesterday, the three of us (me and the kids) got stuck in a very sudden downpour without the stroller cover. Hallie and I got soaked (Lea was relatively more protected in the bottom seat of the Phil & Teds stroller) and by the time we got home from our 8 block walk, were quite bedraggled. I pulled Hal's wet clothes off of her and grabbed a towel and rubbed her down and dried off her hair. Then she grabbed the towel and said, "I dry you off now Mama!" How totally sweet. It made getting caught in the rain totally worthwhile (well, sort of).

Too bad there are no visuals to accompany this, but let me just say that Hallie and I were quite a sight to see!

Midweek Update

Just a short post before I get into bed. School went fine today (which was not unexpected; I am hoping that my $13.99 investment in yet another alarm clock continues to pay off; I suspect an earlier bedtime will help, too). The train ride in was great--I am probably the only insane person out there who looks forward to spending a couple of blissful hours on the train when I get to read for class or prepare powerpoint presentations but, let's face it, not much work gets done at home because my kids (quite correctly so) think that Mama is at their disposal for things like being tossed up in the air, tumbled upside down, and having pillows piled upon them. So the two hours a day that I get for work when I don't pay (much) attention to things like email, Facebook (which I am not a big contributor to in any event), etc really matter to me. I am not a big fan of the mile-long hike through unexciting terrain once I get to Lancaster (part of the problem is the lack of a really direct route to campus unless one wants to take a footbridge that is literally rusting under one's feet), but it does give me the opportunity to revisit my iPod's vast and un-listened to contents, not to mention that I could use the exercise. And it was nice to teach--particularly since some of my favorite students from a couple of semesters ago are enrolled in my classes and it's really quite nice to catch up with them.

Things went OK at home. First and foremost, it does seem that Hallie did miss me and that she understood that I was "at work" (though I am not sure that she comprehends what that entails. Really, there are only three things that a mama or a mommy might be doing if they are not in the room with Hallie: a. "Mama is hiding! She is playing hide and seek!" b. "Mommy is taking a shower" (apparently Mama never does...not sure why) or c. "Mommy (or Mama) is at work!" Anyway, she was fine with me not being here and very happy to see me when I came home.

Sadly, Nadia, our nanny, is not faring particularly well. She was running a fever and coughing her head off today and, consequently, Sharon had to leave work at around 12:30 and take over for her. Sharon will be using more precious PTO time tomorrow and Nadia, who visited yet another ER today, is on strict orders to stay in bed and recover. This is not good, and makes the location of emergency back up care all the more urgent for us. Sharon is going to call Hallie's preschool to see if there is any way that they can accommodate both of our kids for the hours that I work on an emergent basis. They are pretty full up, though, and have to worry about complying with state regulations concerning such things, so I am not holding my hopes out on this one. If anyone in the Philly area has any brilliant ideas about backup childcare coverage, please let me know.

Other than that, I just want to recount a couple of cute things about the kids before I roll into bed.

Lea: She's learned the sign for "all done" and uses it quite appropriately. I think it took her all of one day to master this. I've been signing with her---just a few signs, like "more", "eat", and "all done" and "all done" is by far her favorite. She remains a fabulous communicator who lets us know her needs, and this is very, very useful.

She is also Hallie's #1 fan club member. She wants to do anything that Hallie is doing and gets very frustrated when her comparatively less agile body gets in the way of such endeavors. She is cruising and thinking about walking, but not quite strong enough to do so. But that does not stop her from climbing up onto the chair that Hallie turns into a trampoline and trying to jump up and down on it. She is very pleased with herself when she does this (which is now quite regularly).

Lea is also mastering the art of stacking blocks. She saw me do it once or twice and took over from there.

She knocks them over often and thinks that's pretty hilarious too.

Lea is chatting and babbling up a storm and a couple of times I could swear that I have heard "shoe," "Hallie", and "Lea," but no "mama" or "mommy" quite yet.

Here's a cute shot of Lea lounging on the chair on top of Hallie, who of course was quite happy to be smushed by her sister:

Hallie regularly asks to hold Lea and is always excited to see her. Whenever I pick up Hallie from preschool, she squeals with joy when she sees her little sister.

Hallie also likes to "pretend to be Lea" and much of this pretense involves sitting in the swing (for which she is at least seven pounds to heavy, but I suspect that Fisher Price takes this into account in its design process since all the older kids I know who have long outgrown their swings like to get in them and try to strip the mobile at the top by pushing it in the opposite direction simply because it makes a really cool, yet quite grating, sound). Here's a shot of Hallie pretending to nap in the swing:


Hallie is not only acting super cute these days, but she's turned into a championship level eater (comparatively speaking, that is). She has been regularly downing 24 to 28 ounces of her super-charged goat milk, which has me a bit annoyed (I cannot believe that I am actually writing this) because I have to make a lot more batches than usual and this is consuming more time than I'd like right now. Additionally, she has developed a fondness for what she calls "chocolate popsicles" (known more conventionally as fudgsicles) and had two of them at Aunt Laura's the other day (she would have had a third...of course, they were the sugar free kind, but hey, 40 calories apiece does add up). She had one last night and part of one tonight. Hallie loves chocolate and has asked for "chocolate sticks" (Hershey's bars) several times now and has actually eaten part of them, which I think is great. At the very least it's allowing us to whittle away at the remaining Hallowe'en candy (we are not big candy consumers around here so we still have quite a stash on hand). Hallie's also been demanding snacks more regularly and tonight even ate a quarter of a grilled cheese sandwich and pronounced it "delicious." She's been rubbing her tummy and declaring things yummy and saying "mmm...that's good" about lots of stuff. Of course, she still refuses to eat vegetables and prefers junk food to everything else, but I am not too concerned about this. She gets her daily recommended dose of vitamins in her bottles and I think it's grand that she is not only willing to eat but that she eagerly requests food. I will be very surprised if she hasn't gained some weight over the past two weeks; she looks really good. Not much vomiting lately, either. We are up to 15 days without regurgitation after a pretty bad start this year, and that is a grand thing.

Hallie is also making some progress on the potty. She has earned four stickers so far and will get a prize tomorrow if she goes on the potty again. She still cannot/does not let us know when she needs to pee, but we are not pressing this matter too much just yet. She is excited to get stickers and, hopefully, by establishing some sort of routine, we will eventually get her potty trained. I think we'll try in earnest around her fourth birthday -- I'll be home full time (since the semester will be over by then) and can take charge of keeping her pull up free and deal with the inevitable consequences that arise from this.

That's about all for now. Time to turn in!

"I Make A Face Now!"

Hallie loves to make notes (scribble) in one of my (expensive Levenger) notebooks. Tonight she made this:

Not a bad face, no?

In other notable advances, she announced to Lea today, after we got home from preschool and Lea woke up from her stroller nap (this is where she naps most afternoons): "Hi Lea! You're awake! I missed you." And when Sharon got home from work, Hallie announced, "Mommy's here! Hi Mommy! I missed you!"

I hope that she misses me, too. Tomorrow is my first day back at school after leave and it's going to be hard to be away from the kids for so long, but it's really nice to know that I'll probably be missed.

Christmas and Beyond: A VERY Belated Post

As Sharon just helpfully pointed out, I never did manage to do the Christmas post. I have also not managed to post much of anything else. The heart is willing, but the blogging hands are tired is all I have to say. Things have been nutty around here lately: we are currently experiencing a rare moment (that I am no doubt jinxing as I type this) when both kids are well, but between Thanksgiving through the end of the first week of the New Year, one or the other kid was sick, and quite dramatically so. Then they both recovered but Nadia, our mother's helper/nanny, contracted pneumonia (unrelated to Hallie's; she came back to work on Monday already showing symptoms of distress) and she's been out of work most of the week. So I've been doing pretty much all of the daytime childcare AND trying to prepare to start teaching full time again in a couple of days. Needless to say, blogging has suffered.

So, in the spirit of trying to catch up before the proverbial crap hits the fan, here goes:

Christmas:

We have crappy pictures that do not do justice to how much fun the kids, and especially Hallie, had at Aunt Laura's on Christmas eve (sadly, Santa neglected to leave us a D-SLR under the tree; we are trying hard not to believe we were on the naughty list). Both of the girls were thrilled to see their cousins and things got even more fun after Hallie cracked open a Christmas cracker and found a very small ball inside. She located a cardboard tube from some wrapping paper and initiated a game of 'blow the ball through the tube' with Hannah. What's notable here is that it was Hallie who came up with the idea for this game.

As usual, Hannah was thrilled to play with Hallie. She is a great older cousin and Hallie has benefited so much from being around her quite a bit this year.

Lea had a lot of fun, too. She spent a considerable amount of time at the chalkboard practicing her writing skills:

Now, while she did not in fact write the names on the board, she is really interested in writing/drawing because she sees Hallie doing it so often. She can smell a crayon a mile away and she has successfully drawn a few scribbles on our easel at home. She also enjoys biting off and swallowing the tips of crayons, so we tend to keep her away from them as much as possible.

We ended our Christmas eve soiree by going outside and scattering reindeer food for Rudolph & co. As you can see, we still had a whole lot of snow left over from the two-foot snowfall of the previous weekend. I find it much easier to believe that Santa comes flying in on his reindeer-driven sled when there is some snow to cushion the landing. And, since Sharon had been tracking Santa's progress via an app downloaded on her iPhone, we knew that the big guy was getting near and that it was time to get the kids in bed.

By the time we got back to Grammy's that night, Hallie was thoroughly exhausted. Perhaps she was coming down from a slight sugar high (her Christmas eve dinner consisted of two two-bite brownies; what they lack in nutrition, they make up for in calories). She opened her Christmas jammies, put them on, hit the bed, and crashed for the night.

As is typical, Lea completely came into her own just as Hallie was going down for the night. (This has become a source of great distress to me, by the way, since it bodes poorly for me getting my work done in the evening after Hallie goes to bed).

The first project that Lea undertook was stealing (and eating) Santa's cookies:

Then she moved on to Grammy's dish of Peppermint Patties. She found the shiny silver paper very alluring and the minty chocolate contents even more:

The kids slept in, but we finally shook them out of bed around 10:00am. Hallie clearly had no idea that Santa, Mommy and Mama, and Grammy had left a huge number of presents under the tree for her and Lea. It took a bit of time for us to manufacture the requisite excitement of opening presents on Christmas morning, but by the time Hallie was done, we think she got it. She certainly was into the presents -- which is not at all surprising and, for several weeks running, would regularly ask to open more presents from Santa. This, of course, was reinforced by the fact that we saw lots of good friends and family after Christmas was over and exchanged gifts with them then. I think that by the time New Years Day came around, Hallie was pretty convinced that every day is Christmas.

Anyway, I digress. The big ticket item that Santa got Hallie was a red guitar.

By evening Hallie was strumming away at it quite naturally. We've downloaded an iPhone app to help us tune it but we've yet to find an app that will prevent Hallie from turning the keys and loosening the strings again.

Hallie especially enjoys playing along with the Wiggles and Muno (from Yo Gabba Gabba). Lea's gotten in on the act, too. While the little red guitar is way too big for Lea (which of course does not stop her from cruising over to the guitar stand and plucking at the strings and occasionally threatening to drag the whole thing down on top of herself), she has taken to putting the guitar strap over her head (yes we watch her carefully when she does this, and the strap has a 'breakaway' feature) and playing the toy electric guitar that we inherited from brother Jake. She is so cute and so smart and reminds us a lot of Hallie in a very, very good way.

Of course, Lea got her own musical gift from Santa. Here she is unwrapping her Bee Bop Baby Band set:

She enjoyed the band set, but her real thrill came when she emptied her stocking. Here she is sampling her binkies:

In this next shot, Hallie is posing with her favorite gift of the day, which Grammy got her:

This remains her favorite and, today, several weeks after Christmas, Hallie took a bath with the Wonder Pets figures (we think she is partial to Ming Ming) and had them floating in a makeshift flyboat.

Grammy let Santa know what she was getting Hallie, so he also brought her a Super Hallie cape so that she could be just like her heroes. Unfortunately, the tight velcro around the neck bothers her, so we need to fashion a device to make it a bit looser for her. I think that one of the new mitten clips that we bought would work just fine. (Several times now Hallie has helpfully informed me, when I have inquired about the whereabouts of one of her mittens or gloves, that she 'put it on the floor' -- meaning that she had thrown yet another mitten onto the sidewalk during one of our walks. Even at three dollars a pair on sale at the Children's Place, all of these lost mittens have begun to add up so I've diverted our resources toward the purchase of super cute mitten clips from Etsy; one of them can be repurposed for our little super hero's comfort).

After we finished unwrapping our gifts and had time to test all of them out, Aunt Laura and Uncle Bryan and the extended family brought over Christmas dinner. The kids had a blast playing together and Hallie was very much part of the mix. Here, Hallie is playing with her cousins Hannah and Adam and their cousin, Quinn. The three older kids got Nintendo DS's for Christmas and Hannah shared hers with Hallie after Hallie asked for a turn. Hallie loved being part of the older kids' games.

She also really enjoyed pretending to be one of the five little monkey jumping on the bed and alternatively rough housing and cuddling with her cousin. Hannah makes Hallie very happy and I know that the feeling is quite mutual:

Lea also enjoyed playing with her cousins in her own Lea-like way. Here she is running her hands through Adam's hair (which is super thick). Adam was great because he also tolerated lots of face-patting (and slapping) and hair pulling from his littlest cousin.

We left Grammy's exhausted and in good spirits. The next day, more fun was in store because we had Boxing Day plans with Anne, Eliza Grace, and her Nana. Hallie was super excited when we pulled up at Nana's condominium complex. She knew exactly where we were (she has a phenomenal memory and sense of direction; perhaps she can get us out of all of those jams where we get lost and circle round and round when she gets a bit older). And she was thrilled to be there.

Here's a lovely shot of Anne with Hallie and Eliza:

We hung out all day, exchanged gifts, played hard, ate a couple of meals together and generally enjoyed the company of good friends. We love it that we manage to get Hallie and Eliza together pretty regularly and wish only that we all lived even closer to one another.

The girls ended the day with a nice bath and had a brilliant time splashing around in the tub and playing with Eliza's excellent array of tub toys:

After her bath, though, Hallie's face got very flushed--which is always a sign of a fever--and I became a bit worried. She seemed a tiny bit warm, but the condo was very hot (we had the oven on to cook dinner), and we attributed her slightly more subdued nature to lots of play and no nap. Hallie kept wanting to pretend to take a nap in Eliza's bed, and I suspect that she really did want to sleep, but there was too much going on to really settle down.

That was the evening that Hallie came down with pneumonia. Thankfully that's a thing of the past...at least where Hallie is concerned. Now let's keep our fingers crossed that Nadia (our nanny) recovers in time to take over for me when I need to return to work on Tuesday...

Stay tuned for more (and hopefully shorter and less delayed) developments in the life of our little family during the month of January....

20-10

Hallie loves playing with her legos, and is particularly enamored with the set of little lego people that her brother Jake and his mom, Gina, got her for Christmas. Here she is counting them (after having line them up). It became clear to us that Hallie could accurately count to 29. And what number, might you ask, follows 29? Why 2010 (twenty-ten), of course!

LEGOS

Lest you think that Hallie only lines up her Legos, here are a few shot that demonstrate otherwise.

We're pretty sure that the lego people in this car are practicing some sort of cheerleading exercise:

Here Hallie is building a tree:

She was very proud of the way it turned out:

In these shots, Muno (from Yo Gabba Gabba) and the Wonder Pets are going for a ride:

The Apples of My Eyes

Hallie's Very Good Day

Today was Hallie's first day back at school. She was a bit off schedule, to say the very least, and we were worried about how she might fare. Between her recent bout with pneumonia and her late bedtimes, we were pretty sure that waking her up at 7:30am would leave her tired and cranky and less than well disposed towards good behavior at school.

Indeed, getting her out of bed this morning was no easy feat but we managed to do it. Miraculously, (perhaps aided by the fact that her body wants to make up for lost calories and all), she ate a great breakfast of 3/4 a slice of buttered toast and about five ounces of drinkable yogurt and she did not give Sharon a hard time about ingesting her amoxicillin-laced apple sauce (Sharon said that the capsules smelled precisely like the bottle pink goop and were enough to make her gag but Hallie does not seem to mind it, oddly enough).

We were out the door pretty much on time and at school by a bit after 9am. Hallie was excited to jump in the stroller this morning and exclaimed "it's circle time!" when I told her we were going to school and this boded quite well. When we got to school she wriggled out of her snowsuit (it is wicked cold here) and raced up the steps and ran into Miss Flora's arms, said hi to her teachers, and grabbed a seat next to her friend, D., and began her art project.

When I picked her up six hours later, Miss Flora was all smiles. She said that Hallie had had the best day ever: our girl was incredibly vocal all day long (she even sang out loud during music time, which is something that she never does, even though she knows all of the words to all the songs); had initiated interactions with all of her friends (something that I witnessed during pick up time when she stopped to talk to everyone and even asked one dad, "whose daddy are you?" and, when he identified himself, said, "Bye, bye, V.'s daddy!"); had eaten well; napped well; requested that she be taken to the potty and actually used it; let her teachers know what she did and did not want to do, etcetera. She was thrilled to see me and exclaimed "that's my snowsuit!" when she saw it on the hook, requested that I put on her boots but was okay with the fact that we only had shoes at school today, asked for her mittens (never mind that she threw one overboard and lost it on the way home from school), and inquired of me, "where is my stroller?" when she did not see it in the lobby (it was outside in the courtyard).

She continued to be chatty once we got home and then quickly headed off to the pediatrician's office for a follow up to make sure that she is recovering from her pneumonia. She easily complied with the nurse's requests throughout the checkup and we managed to engage in some great Floortime play while we waited for the ped to see her. The ped paid her a supreme compliment when he said that he wished she could teach his kids to behave as well during a checkup: she held out her finger and then thumb for the pulse ox probe; told the ped. that the stethoscope was for "listening to my heart;" removed her own shirt so that the nurse could take her temperature; and the like. And, after each medical intervention, she thanked the practitioner for doing what s/he did. She ended the visit by going over to the nurses' station and requesting her own sticker (something she never does; usually, I have to initiate most requests for her).

Once, at the doctor's office, and then once again tonight at home, Hallie put together two six-word spontaneous sentences. They were so mundane, so completely normal that I cannot even tell you what they were. They were appropriate as heck and utterly inconsequential and yet complex, completely well-conceptualized statements that were entirely intelligible and completely on topic. It's hard for Hallie to string together so many words in a row and she tends to stammer a bit to get them out of her little mouth, but there they were: our first long six word sentences. And I doubt that these were our last ones, too.

All of this was grand in and of its own right. But then, when I looked in Hallie's backpack this evening, I found the following note from her OT, which I am transcribing verbatim:

"If you want to know the definition of joy, you should have seen Hallie at school this morning. Smiles, laughter, participation, and cooperation.

"During free story time before music, Flora asked Hallie to choose a story so she could read it to her friends. This was a wonderful way to get Hallie to not only interact with her peers, but to follow up on my suggestion about spending time looking/talking about the story. Hallie LOVED holding the book so her friends could see, and labeling the pictures.

"During music, Hallie was so happy! She ws the only one who knew a goose says 'honk!' We had a lot of opportunity to work on motor skills -- jumping with 2 feet, balancing on one, and cross patterns like swinging arms and stomping feet."

Hallie helped clean up at school today and at home this evening and asked to go to bed when she was tired (rather than melt down). She literally administered all of her own meds (the amoxicillin apple sauce, the syringes of axid and periactin, and the puffers of flovent) and then cheerfully went upstairs to sleep.

We're not sure why today was such a great day (other than the fact that it was the first day back at school and that Hallie loves school), but we're going to try to remember how good this day was on days that are less good. We're taping the OT's note to the fridge and etching it in our memories (which are nowhere near as good as Hallie's) so that we can look back on this day and smile.

***

Final tally of vomit-free days for 2009: 272
Tally thus far for 2010: 2 (not getting off to a great start, really, but let's face, the pneumonia hasn't helped any).

***

I do promise to get some pictures up in the near future, by the way!

Home!

Hallie busted free this afternoon (with doctor's permission, naturally). She couldn't wait to leave the joint and was thrilled to pack herself into the little red Radio Flyer wagon that she adopted while at CHOP and get the heck off of the 4th floor of the Seashore House. However, when offered the choices of 1. going straight to the car and coming directly home and 2. passing through the CHOP gift shop and getting a balloon (as I noted a few posts ago, we reward our kids for their trauma by buying them something because, as anyone who has ever been to our home already knows, we don't have enough toys and assorted stuff crammed into our tiny space just quite yet), Hallie responded eagerly with a very resolute "BALLOON!" So now we have a 3 foot Dora (a current favorite of Hallie's) residing alongside the still-inflated bouquet of happy face balloons.

Hallie was relieved to see me and Lea and to get comfy here at home. She was also thrilled by her bath today, which was extra long and involved a lot of 'building' of shaving cream towers with the foam soap that Santa left in her stocking. She took a nice long nap, ate some food. This was not much, but, over the course of the day, managed to ingest a slice of bacon, an ounce of her goat cheddar, some french fries and goldfish crackers, and about two bags of cheese puffs that are utterly lacking in nutritional value but do have some calories, three apple juice boxes that helped us keep her hydrated and, most importantly, about 13 ounces of her fortified goat milk. It's been a good week since she's had any goat milk, which is still the mainstay of her diet and contains her multivitamins, and no doubt this, plus the general malaise of fighting pneumonia and the racing metabolism associated with a fever and elevated heart and respiratory rates, account at least in part for the severe drop off in Hallie's weight. According to our home scale, she is a whopping 30 lbs. 6.4 ounces right now, down from about 31 lbs. 8 ounces two weeks ago. She seems to have also grown in stature and is probably about 40 inches tall right now, so she's essentially a string bean. She weighs less than she did last May, which is worrisome to me. But at least she is not refusing her beloved "ba" (bottle) anymore so maybe she'll pick up steam in the eating department soon.

We found out from the doctors that there are no particular restrictions on her activities at this point, so, as long as the fever stays at bay, she'll be able to go back to school on Monday and to her therapies this week. We were also able to celebrate a somewhat belated New Years this evening with our friends Renee and Kim and their daughter Taylor, and this made us and Hallie very, very happy. Taylor, who is 18 months old, adores Hallie and Lea and they feel the same way about her. The kids had a blast crawling through our play tunnel, making music together, and drawing at the easel. They kept each other amused and the four of us were, for the most part, able to have adult conversation and sit at the table while they all played. This is something pretty new for us. Brief interventions were only needed when scuffles broke out over toys; Lea or Taylor wanted to nurse; and when Lea grabbed hold of Hallie's two-bite brownie (Hallie did not mind) and shoved the whole thing in her mouth and made a mess (she had no problem eating the whole thing; she just had lots of chocolate on her face that required fairly extensive clean up).

We did manage to get the amoxicillin powder (from an opened capsule) into Hallie this evening, which is a relief. Hallie experiences sensory vomiting with some medicines, including ibuprofen and all of those nasty pink bubblegum flavored antibiotic suspensions, and we were not sure how she'd do with the powder (which is no doubt bitter), even if it was mixed into applesauce. We did not (and do not) relish the idea of bringing her to the ped's office for daily shots of antibiotic, so let's keep our fingers crossed that she can continue to take her meds this way for the next nine days.

On other, loosely related developments: Hallie is now drawing faces that are pretty darned accurate. A month or two ago, she'd draw a circle for us, but, after the points of her pen or crayon met, she'd continue to go round and round (so that the resulting product would look more scribblish than circlish). Over the past couple of weeks, she has stopped doing this and instead draws a circle and stops when the points meet. She places eyes, nose, and mouth in the proper place (though she does not yet accurately distinguish between a happy smile and sad downturned lips), and will add in ears, chin, hair and a body if this is requested of her. And tonight she drew a very accurate looking sun in the sky when asked to do so. She is also attempting to draw her own hand and asked me to help her turn it into a chicken (I think she meant turkey; this was something I tried to do with her back around Thanksgiving and she expressed no interest in my turkey hand art at that point but clearly remembered that hands can look like various species of fowl). And she loves carrying around her 'notebook' (a little spiral bound notebook I picked up for her at Rite Aid) and writing down 'clues' in it, a la Blue's Clues (another favorite show of hers). It's very cute.

OK--it's super duper late (the kids were both up very late due to massively disrupted schedules that somehow have to right themselves by Sunday evening) so I should end this here but I do promise to talk about Christmas at some point before Valentine's Day!

Ushering in the New Year at CHOP

Sharon took this picture of Hallie just around the time of her admission last night (or early morning, really). It took a while for the nurses to start Hallie's IV so that she can get antibiotics and fluids into her system and then even more time to find a room for her. Hallie and Sharon weren't settled down into their new (and hopefully very temporary) digs until around 4am. As you can see, Hallie was exhausted. She was a great patient though and balked only at the blood pressure cuff and IV stick; otherwise, she was a charming little girl who cooperated with her nurses and doctors throughout the whole process and kept thanking them for doing things like taking her temperature and listening to her heart and lungs.

Meanwhile, back at home, Lea and I found ourselves awake, too. Neither dark quiet time nor a bedtime bath really settled Lea down. She was missing her mommy and interested in going to sleep in her arms (and at her breast), not mine. Finally, some very vigorous rocking did the trick at around 2 am. I collapsed in bed with her, my bottle in the cooler at the bedside ready for when she inevitably woke up seeking out Sharon to nurse. That happened some time between 6 and 7 am and Lea's response to the bottle was none too pleased. When she realized that mama, and not mommy, was in bed with her, she began to thrash and kick and give me a tongue lashing (she makes these very annoyed back-talking sounds --a very guttural and prosodic "rah-rah-rah-rah-rah" that suggest her deep displeasure with you when you don't do something she wants to do or deny her something she wants to have). I whipped out and presented the bottle to her but she was having nothing of it and began to kick me more fiercely. Then I tried to place the bottle in her hands (she likes to hold her own bottle and not have it held for her). She grabbed it and threw it at least a foot. And began to thrash, kick, scream, and backtalk some more. This lasted about fifteen minutes. She then seemed to collapse from exhaustion but in fact was only gathering more steam for the next battle, which lasted just as long. Finally, some time after 7, I managed to shove the binky in her mouth and get her to sleep.

Both Lea and Hallie slept until well past 11 am. The nurses and doctors assessed Hallie while she was asleep and decided that she needed to spend another day and night at CHOP: it seemed imprudent to discharge her because of her oxygen saturation, which was hovering in the lower mid 90s (93-94) and never exceeding 96; needing to make sure Hallie wasn't reacting to the antibiotics she was being administered; and the very real need to ensure that Hallie doesn't get dehydrated (which is especially a problem now that she is refusing to drink her milk entirely and is seriously limited in terms of intake more generally---she looks painfully thin right now). Fortunately, Hallie did not need to be placed on oxygen, but she needed (and continues to need) IV fluids right now.

Sharon did find out that it would be possible to bring Lea over for a visit. I was of two minds about this: on the one hand, Lea missed her sister and needed to nurse (and Sharon needed to nurse her just as much). On the other hand, bringing her to CHOP places her at a greater risk of picking up some yucky bugs (it places Hallie at just as great, if not a greater, risk, too). But we decided to bring her in since we could keep her in the room with Sharon (there's a pretty comfortable bed/couch for parents in the room). So Aunt Renee shuttled us off to CHOP early this evening and we spent a few hours there.

At first Hallie was pretty lethargic and subdued. Renee was worried about this. But after a popsicle, she perked up and we took the kids on a wagon ride through the hospital. The kids had a blast (and particularly enjoyed the relatively fast downhill run in the corridor between the main hospital and the Wood building).

but once 7pm rolled around, Hallie was exhausted and weepy again (this has been the trend the past few days). She was none too thrilled about eating her dinner and managed only to get in a couple of bites of fish stick, a slice of apple, one fry, and four sips of apple juice. (Lea, in contrast, happily ate a bunch of food, of course). She quickly began to lose it, so Renee, Lea, and I headed home. An hour later, Hallie was up and crying for me. This broke my heart. She was inconsolable and, as of my last conversation with Sharon at midnight, remained so.

Lea slept happily for a couple of hours and is now awake again. I fed her some more food (the kid can eat), another 6 ounces of bottle, and changed her diaper and got her into jammies. And as soon as this is done and posted (in a matter of seconds), I'm going to try to get her down again. Anything short of 2am will be a victory, of sorts.

So this has ended up being a very different way of ushering in 2010 than anyone ever expected, but hopefully things improve from here.

I hope everyone out there reading this had a happier new year celebration and wish you all health, peace, and love in 2010.

Hospitalized

Well, they don't like what they see or hear (her left lung looks pretty bad) and want to keep Hallie at CHOP for at least 24 hours. They suspect it's a bacterial infection and have started her on IV antibiotics. Her pulse ox is hovering around 95, as long as she is not crying, and then it's in the 80s. Unfortunately, the sound of the monitor beeping is all too resonant for her and scares her, so she was whimpering in the background while Sharon updated me on Hallie's status. Come to think of it, monitors scare me, too.

I can't believe that Hallie gets to usher in the New Year in the hospital. Poor kid.

Out with a Bang....

Hallie had a very nice Christmas eve and day with her cousins (more about this later, I hope) and a lovely time with Eliza Grace on Boxing Day (which extended Christmas for the two of them...both are entirely enamored of opening presents...She is still asking us to "do Chanukah" every night because that means more presents to open). Sadly, though, she came down with a fever while at Eliza's Nana's house (we didn't know this until we got home; the condo was warm and the oven was on and so it didn't seem so concerning that Hallie was flushed but, in retrospect, flushed=fever in Hallie's world). She cried and vomited in the car on the way home from the greater Princeton area and was clearly sick by Sunday morning. She ran a pretty high fever all day on Sunday, topping out at a troubling 104 F + (we take her temperature under her arm and axillary temps are none too reliable). We called the after hours practice and the very cautious doctor on call (whom we like a lot) had us bring her into the ER at CHOP. It seemed like a garden variety viral infection to the ER docs and so, as long as she could stay hydrated (and she could, since the vomiting was not persistent), she was free to go. Monday was more of the same. Tuesday she seemed better by the afternoon and had not been running a fever all day but the fever had returned by the evening, though less virulently than it presented the day before. Today, Wednesday, she seemed totally normal and so the virus seemed to have abated. She even wanted to eat (ate about a slice of bacon and a slice of buttered toast, which is more than she's consumed the past three days combined). So the worst was over...

...or so we thought. Tonight the fever returned. Our axillary reading (100.7) was lower than what her fever turned out to be (at least a couple hours later, when it read 104, rectally, at CHOP). But more troublesome was her grey/blue ashen color, which seemed very off to me, and her rapid, labored breathing. We called the after hours practice and the nurse had us count her respiratory rate. Over 40 breaths per minute is troublesome; Hallie was at 57 by our reckoning. So Sharon brought her back in. At triage, her pulse ox was reading 90-92 and never went above 95. Her chest sounded 'squeaky'. And her heart rate was over 160.

Of course, Hallie, being Hallie, was a charming patient who was very engaged with her doctors and nurses and teasing and playing with them. She has a bit of an appetite, so she ate a saltine and at last update was working on a graham cracker. She acted fine. But her chest xray indicates otherwise.

The upshot: pneumonia.

They are trying to figure out whether she gets to stay at CHOP for New Years Eve (oh joy!) or come home and recuperate here. I haven't heard anything from Sharon for a bit, but my sense is that it will depend on whether she needs to receive any oxygen therapy (or at least be in close range of nasal cannula...what a horrific thought, given that she came off the Os 3 years ago now).

So 2009 is going out with a bang. And not a festive one, either.

All About Lea

Suddenly, over the past couple of months (and particularly over the past few weeks), Lea's spitfire personality has emerged full force. She was always a spirited baby who made her needs known to us -- for instance, we've known for quite some time that she doesn't really enjoy sleeping as much as she enjoys playing and being in the thick of things, and that she's very determined to do things in her own way. But, recently, we've discovered that Lea is a very, very good communicator.

A couple of examples: When Lea likes something and wants it, she clucks like a duck. It's sort of amazing to hear. If you don't give her the desired item (usually food or drink), she'll start clucking louder and faster and also reaching for whatever it is that she wants. When Lea wants to do something, she'll also let us know what it is quite effectively. If she wants to get into her swing (usually to chill out with a bottle of formula or her new favorite beverage, Yo Baby drinkable peach flavored yogurt), she will crawl over to the swing, pull to stand, and begin to swing the swing back and forth. If she wants her diaper changed, she will crawl over to the diaper pad, grab the wipes, or, if there is a diaper in her reach, she'll grab that and bring it over to you, waving it until you get the message.

Lea is also a highly skilled baby who learns new stuff quite quickly. This past week, after I showed her how to use her walker to get around, she began to walk around the room using her walker, which she thinks is great fun.

When I showed her how to stack two blocks on top of one another, she mimicked my moves very effectively. And she knows that socks and shoes belong on her feet and sweaters on her torso and tries quite hard to get them on and in the right place. She doesn't quite have the fine motor skills to perform these tasks, but that doesn't stop her from trying. And, like Hallie, she seems eager to try on everyone's shoes and not just her own and even said the word "shoe" today while trying to put on one of Hallie's.

Lea always keeps an eye on what Hallie is doing and wants to do it, too. So she often pulls to stand at the easel and attempts to draw; grabs Hallie's cars and trains and wants to play with them too; and will get in the middle of our puzzling, castle-building, and game-playing quite reliably. Hallie is almost always happy to play with Lea and often initiates games of "more silly" with Lea, but isn't always thrilled to share her toys, especially when she's doing a puzzle or building a structure and continually admonishes her sister quite emphatically, "No, Lea! That's my toy!"

Lea also keeps an eye on Zen and adores him. Zen is a great cat and puts up with all of Lea's attention, which not only involves gentle patting but some eager swatting and pulling. Lea is equally enamored with Zen's stuff. We have to watch her like a hawk or she'll end up grabbing food out of his bowl, playing in his water, or lying in his bed. (Truth be told, though, Zen doesn't really use his bed--he prefers the dining room table--so we're not too vigilant about this). Here's a cute shot of Lea curled up in the cat bed:

Lea remains an adventurous eater who is willing to try most new foods presented to her but, like Hallie, seems to prefer snacking to eating a full meal. We're not too concerned about this just yet because Lea tends to drink a lot of milk, formula, and yogurt and is growing quite effortlessly. And, in contrast to Hallie, Lea is an adventurous eater who will try (and often like) pretty much everything we offer her, especially if it comes from our plate. She and I often share a snack of hummus and pita and, the other night, she tried and loved smoked gouda; horseradish cheddar cheese and crackers; and crab and avocado dip. Veggies liked peas, carrots, and green beans are some of her favorites and she will cluck furiously for Earth's Best pear and mango whenever I'm giving Hallie her prilosec, which is often mixed into this fruit puree. We've started giving her a fruit snack at the same time to stave off the clucking, which otherwise escalates into whining. Of course, she also clucks for wine, which we are less indulgent about! We do hope that Lea begins to eat more at any one sitting so that her tummy is full and so that she eventually replaces her liquid (breast milk and formula) consumption with solids, but she is still under a year old so we're not going to push her to eat a full solid meal just yet.

Amazingly, however, we never had to push her to learn how to use a straw. Hallie showed her once, about five months ago, and Lea picked up this skill immediately. Here she's chilling with her Yo Baby treat:

We did have a bit of a medical scare with Lea last month but are hoping that all's well that ends well. Lea often seemed to us to run warm and her head was nearly always a bit hot, but she did not seem feverish so we merely attributed this to her being an extra sweaty baby and attributed her slight temperature elevation to continual teething (Lea now has six very sharp, big teeth and more on the way). But when she began to have trouble going to sleep and staying asleep and then started being very cranky, we grew a little more concerned. Like Hallie, she seems to have a perpetual runny nose (we blame preschool for this) and so we thought she had a cold on top of teething. But after she began spiking high temps--her highest was 104.5 but she'd been running around 102 or 103 for a 24 hour period. Tylenol or Motrin brought it down to about 100 but she was clearly not doing great. On top of this, Lea was refusing to eat and drink and I was worried that she was beginning to get dehydrated. Finally, I noticed that her pee smelled off, I began to worry about Lea having a urinary tract infection (UTI). She is at high risk of these because of labial adhesions (sorry about revealing too much information here) and so we brought her into the ped's office two Fridays ago to check out the situation. Of course, it's not possible for babies to pee into a cup, so getting a urine sample from Lea was a pretty traumatic affair that involved taping a plastic bag to her, which failed miserably, followed by two failed attempts to catheterize her (her anatomy made this hard), followed by sending us home two hours later with another bag attached to her. This, combined with Sharon coming home early from work to nurse Lea, finally yielded the necessary pee, which Sharon raced over to our excellent pediatrician's office just before they closed on Friday evening. One dip stick later and Lea was confirmed as having a raging UTI. They started her on antibiotics immediately (about which she was none too pleased; unlike Hallie, who, thankfully, is great about taking medicine, Lea is never happy about this at all and even fights things that taste relatively good like Tylenol).

Unfortunately, Lea did not appear to improve much on Saturday and remained reluctant to eat and slept away the day while Sharon and Hallie went to hippotherapy and then to a Chanukah party at Grandma Sandy's and Poppy Jack's. While she did seem better on Saturday evening, she was still running a low grade fever on Sunday and so, as per the recommendation of our ped's office, we took her in to the ER at CHOP on Sunday. I stayed home with Hallie while Grammy and Sharon brought her to the hospital (since there was no use exposing Hallie to a long wait and lots of germs in the hospital). There they confirmed that the original antibiotics were not ideal based upon the culture that had just come back and started her on a different antibiotic, which seems to have done the trick.

The big questions, however, were whether this was a chronic UTI that had caused kidney damage and whether Lea was experiencing bladder reflux. To figure out all of this required yet more testing, which Sharon and I completed last Tuesday. Fortunately, we can rule out those problems.

Still, Lea had been through a lot and she deserved a cheerful pick me up. It's long been our tradition that, if Hallie ends up at CHOP for something other than routine specialist care, we buy her a little gift to reward her for putting her through the wringer. Unfortunately, Sharon was unable to visit the gift shop after the ER but we made sure to get her a present after her testing was completed. Here's Lea playing with her smiley face balloon bouquet:

She is quite the little character and now that she's feeling better, she's even more of one. I am sure that, once she begins to walk, Lea will definitely give us a run for our money.

I'm still working on a Christmas post, so check back soon!

Social Stories and the Importance of Experiencing Rituals

Chanukah is behind us and Christmas is right around the corner. We are a sort-of hybrid family: I was raised in the Orthodox Jewish tradition but have always loved the holiday decorations we were never permitted to have; hence, I am a big fan of Christmas trees, jack-o-lanterns and spooky spiders, and could be easily convinced to array our home in turkeys and bunny rabbits, too. Sharon is a 'mutt' (her phrasing, not mine) whose ancestors include Ukrainian Jews, Anabaptists from Germany, and Catholics from Ireland. Her dad was raised Protestant (his family was not a big fan of either Jews or Catholics); her mom was raised Catholic but by a Jewish mother who never converted; and she and her sister attended Catholic school as kids, celebrated Chanukah and Passover with their Jewish cousins as kids and Christmas at home, and both now identify as Jewish but this is more of a cultural (read: food) identity than a purely religious one. Anyway, since holiday traditions are important to the family, we are interested in sharing these with our children.

The sticky part is that children on the spectrum (or at least Hallie; as the old adage goes, if you know one autistic person, you know one autistic person) don't always 'get it' when you discuss traditions with them. Indeed, it's sometimes unclear to us what Hallie understands when we tell her stuff. She is clearly bright, and she clearly knows so much (to recap again, well before she turned two she identified all letters of the alphabet; could match colors and shapes and identify them by name--though not speak their names; could count to twenty (some of her first words were numbers); and is okay with following simple directions when you ask her to do something tangible (as long as she 'hears' you and doesn't get distracted). But she has auditory processing issues, is a visual learner, and most likely has some variety of Semantic Pragmatic Language Disorder. She still cannot answer simple questions effectively and it's not clear that she gets abstract concepts at all. So, for example, if you ask Hallie what her favorite color is, she'll just tell you what color she is wearing that day. And, if you have just explained to her the entire Santa story (Santa brings toys for good girls and boys; he comes down the chimney on a sleigh that is pulled by reindeers; he eats cookies and milk; and he leaves the presents under the tree) she might a. bring you a stuffed Santa; b. bring you a stuffed reindeer; c. point to the Christmas tree in our living room and say "My tree! I love my tree!" and d. unwrap a present if you are unwise enough to have one under the tree already.

What she will not do is put it all together. So, if you ask her, 'who pulls Santa's sleigh?' she'll echo "Santa!" If you ask her what she wants Santa to bring her, she'll answer "Christmas!" She makes connections, and she knows all the words ('present' is a favorite of hers and she loves opening packages and boxes and thinks that all of their contents are hers), but she has no sense of how these things work together and cannot grasp the abstract concept of the Santa Claus story. I suppose that this means that she will avoid the trauma of finding out that none of this is real and that mommy and mama ate all the cookies, but the problem is that we so want her to believe. This is a rite of childhood, of innocence.

I talked with her preschool teacher about this last week. Kristen brought it up with me, and not the other way around. She had the kids make some reindeer food for Rudolph & co. and Hallie had a great time playing in the oatmeal. But she had no idea what she was doing. And both of us sensed that this is a global problem, not a localized, reindeer-related one. She happily and cheerfully follows directions and transitions beautifully from one activity to the next; she loves doing what the other kids are doing during group activities and is an avid listener to stories during circle time. But she has no idea why she is doing what she is doing; she merely goes with the flow because this is what is expected of her and Hallie, if nothing else, is an aspirant teachers' pet who would like to make a good impression (except for when she wants to test her limits with us, her moms, or with Miss Flaura, her guardian angel/PCA at school). But we would like her to understand what she is doing, and not just do it.

Not understanding stuff often leads to sensory overload for Hallie once an activity is no longer quite so structured. For example, she loves music time at school beyond imaginable belief and knows all the words to songs and will sing them when she is comfortable. But she has no idea that they are planning to have the kids perform Christmas songs at the church where preschool is located in front of an audience of all the kids' families and that there is a Christmas pageant followed by a dinner. I am sure that this has been explained to all the kids, but Hallie cannot process this information. So, on Tuesday night, when this event happens, she will once more come un-moored and look for some corner in which to hide.

How do we deal with this as parents? The only thing that I think can work is constructing a very concrete social story for Hallie and using her peers (props, I suppose) to act this stuff out. I have been telling her about the performance, but I know she isn't understanding me. On Monday, should school not be canceled due to snow, I will walk her to the church where the performance will be, and will show her the dais, and have her go up on it, and will sing a couple of the songs with her there (we have a list of songs provided to us parents in the preschool family newsletter and they're pretty standard fare). I will talk to her teachers and Miss Flaura about the need to explain this social story to her, too. Maybe, if things are concrete enough (she will have been in the church, on the stage, singing) she will feel less lost this time around and won't be quite as overwhelmed as she was at the Summer Camp musical and the Hallowe'en costume parade).

Enacting the Santa ritual will be harder. It would be most helpful to be at our own home and show it to her, preferably in the company of a couple of other children who already know what they are doing, so that she has a body memory of this event. That's what really helped with Halloween. While the teachers had been talking about Halloween and had the kids make various holiday-themed crafts (they picked and decorated their own pumpkins and fashioned jack-o-lanterns out of paper bags and orange paint and spiders out of egg cartons and pipe cleaners) and had the kids parade around in costume, the significance of all of this eluded Hallie who just thought of these as regular old craft making/art and pretend play. What really worked for her was having Eliza Grace here and experiencing the magic of getting into costume and trick-or-treating alongside the other kids on our block, who were similarly decked out. That made things real for Hallie and lent them significance, and she continued to talk (in her own word-economizing fashion) about trick-or-treating with Eliza Grace for weeks after the event.

We'd love to replicate this sort of body memory production where Christmas is concerned but we don't have other kids with whom we can do this. It is kind of socially unacceptable to lure a couple of Santa-believing children to our home with promises of presents provided to them on Christmas morning just so we can make this part of things come alive for Hallie. Lea is obviously far too young to understand anything right now, though I suspect that, later on in life, Lea will probably do a lot of translating of ritual and abstraction for her big sister. And Christmas is one of those holidays where it is difficult to get people to alter their particular family practices, particularly when no one quite understands that your child, who is on the autism spectrum, isn't going to just figure this stuff out for herself because, after all, the other 99% of all children have done so with no special parental effort.

It's sometimes hard to be a parent of a kid who doesn't quite fit in to the typical world. It makes you empathize with your kid on the spectrum: it's a weird world out there with a ton of social codes and rituals that seem odd and that moves at a very fast pace. Figuring out how to slow this down and make sense of it for your child so that they can mind meaning in this bizarre universe is our job as Hallie's parents. We'll figure something out; Sharon and I always do. But there's no question that it could be, and should be, easier.