How Old is Hallie?

Lilypie Fifth Birthday tickers

How Old is Lea?

Lilypie Second Birthday tickers

Thursday, December 31, 2009


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.

Friday, December 25, 2009

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!

Sunday, December 20, 2009

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.

Let it Snow, Let it Snow, Let it Snow!!!!

I'm not sure whether it's officially being called a blizzard, but, over the past 24 hours, Philadelphia did receive the largest amount of snow in a single event in December since 1909. According to the official sources, there's 16 inches of the white stuff on the ground at the airport. (***EDITED: The official snowfall now is over 22 inches and this is now the biggest December storm on record, surpassing the aforementioned 1909 one by about an inch).

By the time the kids woke up this morning at 9am, we had at least four inches of the stuff. Hallie was thrilled and came running to me announcing "It's snowing!" This is the first time, I think, that we've had enough snow for it to have actually made an impression on her. Last year, we had hardly any at all. And, while I took her outside while it was flurrying a few weeks ago, nothing stuck and she found it kind of a non-event (which it was).

We monitored the situation over a lazy breakfast (half a piece of toast for Hallie and homemade blueberry pancakes for Sharon and me....Lea grazed on all sorts of stuff) and then, fortified with a couple of cups of coffee, I went out to shovel. Hallie wasn't interested in staying behind, so she decided to help me:

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Karina was outside, too, helping with snow removal from her parents' car by eating it, as well as shoveling it, and the two kids had a fun time making snow angels:

Hallie was out for a good forty five minutes enjoying the snow event. By the end, her cheeks matched her snowsuit:

Had she been willing to try some hot chocolate, this would have been the perfect time for it!!! Hallie, being Hallie, settled for removing her cold wet clothing and warming up with a bowl of cheerios instead. By all accounts, she had a great time.

Lea did not make it outside today, but this is what she looked like all bundled up for our trip to pick up Hallie from preschool yesterday:

She had on a oneside, fleece pants and a jacket, a fleece snowsuit, and her quilted snowsuit. Needless to say, she was too bundled up to move. We kept her in today because 1. she doesn't have real boots; 2. she isn't walking yet and cruising while sinking into snow that came up to her chest didn't sound terribly pleasant; and 3. crawling in 8-10 inches of snow really isn't an option. She will have to go outside in it on Monday when we venture forth to get her a whole series of medical tests (this deserves a post in its own right, but she's been plagued with a miserable UTI which likely accounts for the crying, moaning, and lack of sleep that we experienced last month) so she'll get to see the snow even if she doesn't get to shovel it or eat it.

Provided that there is sufficient moisture in the snow (it's very cold out--was in the 20s all day--and the snow was quite dry), we're going to try to make a snowman in the morning. That is, after I shovel yet again!

Tuesday, December 8, 2009

Real Super Heroes Wear Tights

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Spider Man Legs: that's what Hallie calls tights.

Since both Sharon and I kind of hate tights, we never dreamed of tormenting her by forcing her to wear them and instead have been buying Hallie cute leggings to wear under dresses and skirts. Thus, we had no idea that Hallie adored wearing tights until Saturday, when we put her in a pair of brick red tights in honor of her annual holiday card photo shoot. She was very excited by her "Spider Man legs" and insisted on wearing them all day, even when we changed her back out of her dress. (She was just as excited by her new black patent leather shoes, which amazingly took us all of ten minutes to purchase at Olly's on the way to the picture taking appointment. Even once she gave up her tights, she continued to wear her black shoes and could be seen prancing through our house in nothing but black patent leather shoes and a pull up late into the evening. We both sense that she would have been happy to give up the pull up, too).

Anyway, back to the Spider Man Legs: neither of us could figure out why Hallie was calling tights by this name until it dawned on us: Real super heroes wear tights. Now if only I could convince Hallie that they also eat quiche....

Candy Cane Kids

Here's a picture of Hallie and Lea getting into the holiday spirit. Sadly, Lea is grimacing because her first year molars are coming in (this would also account for the bags under her eyes). And Hallie may look like she is making a silly face but what she's really doing is saying "Cheese." She does this a lot now during picture taking, which is why her mouth always seems askew.

Happy Holiday Season everyone!
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Lea as Narcissus

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Saturday, December 5, 2009

Amazed and Surprised: Feeding Psychology and Who is Really in Control

Sometimes Hallie does stuff that we find confounding, in a good way. It then becomes clear to us how on the ball she really is, how much she follows even when it's not clear that she's listening, and how smart she is. Here's what happened:

Yesterday, we trekked over to CHOP for our first real session with the psychologist who is part of the Feeding Team. We're always a bit conflicted about the feeding stuff since we never really seem to get very far before we hit another roadblock but we were heartened that the psychologist listened to us when we met with her a couple of weeks ago to go over Hallie's case and figure out some sort of strategy. Our aim was to take it slow (always a good thing in our book since shock tactics backfire terribly around here); use a behavioral approach but one that did not involve force feeding, which is something with which neither of us are comfortable; and, most importantly, create a ritual around eating for Hallie that she could assimilate and then work from there to advance family mealtimes. Rituals really work for Hallie--she likes routines a lot and, while she's never prone to tantrums when routines are disrupted, we do know that whenever we switch things up on her, she tends to withdraw more into herself because she gets overloaded. We absolutely hate it when Hallie shuts down for all of the pretty obvious reasons.

Anyway, the plan was to begin with a snack at the table that did not involve television. We've used TV as a mealtime distraction/reward for pretty much as long as Hallie has been "eating" solids. We find it disruptive and, in the end, counterproductive. Ultimately, we'd like to get away from using it this way even if Hallie does a pretty good job, for her, of eating OK meals while wandering around watching the Wonder Pets and Yo Gabba Gabba. We don't envision living a life where everyone eats meals in front of the TV and TV-watching, while pretty interactive in our world, tends to be anti-social and the last thing we want to do is to stoke Hallie's already proclivity toward preferring electronic friends to real life interaction. Still, the psychologist understood why we can't afford to go 'cold turkey' and change everything up at once. The last time we did this with feeding, when we insisted that Hallie eat at the table and gave her the power to decide how much and whether she ate, Hallie responded by going on a full-fledged eating strike. She's eating pretty well right now and we don't really want to disrupt that entirely.

So we got to the doctor's office, after learning that Hallie grew another quarter inch in the last two weeks but lost about 4 ounces---we're not too concerned with this because she was, after all, pretty sick for about a week and her weight, 31 lbs. 11.5 ounces, and especially her height, which is 39.75 inches, are quite good. I pulled out the preferred snack--a small slice of chocolate cake--and the psychologist plated it up. She told Hallie what was happening: that she was going to sit and take a bite and then get to play with a toy. That if she did not take a bite herself, that V. would help her. And then she'd get to play. And that if she didn't take a bite at all, she would not get to play." Hallie, who is in a hungry phase right now (she seems to compensate for illness-related weight loss by experiencing a burst of hunger that helps her make up those calories she's lost), grabbed the fork and fed herself a bite of cake. Then she played for 30 seconds. And then repeated this process, quite happily and without a shred of protest, another nine times. That was it. The process was over in about fifteen minutes and then the psychologist and I went over the "rules" and how the goals of the process was a. to reinforce that we are in charge; b. get her comfortable with the ritual and craving it (or at least the playing between bites even if not the cake itself); and c. to ultimately generalize from this to bigger things, like getting Hallie to eat non-preferred foods, or more foods, or meals, or whatever we decide we want to do.

One critical feature is that, during this process, whoever is feeding Hallie needs to be able to devote complete attention to her and to the process so that it is basically the same all the time. This is awfully hard to do when one parent is watching both kids, but the reality is that Sharon gets home a bit too late for the snack to be successful once there are two parents in the room. Sharon and I talked over this whole issue on the phone this afternoon and we decided that, around 6:30, immediately upon Sharon's arrival home and after Hallie had already eaten something for dinner, we'd do the cake snack ritual thing.

Well, apparently, Hallie wasn't going to let us take complete charge of the situation. Around 6 o'clock or so, she went up to her high chair at the table and said to me, "Chocolate cake please mama!" Fortunately, Lea was in her swing (during an abortive attempt at a nap) and I was able to drop what I was doing and slice off a piece of cake for Hallie. I recited the rules to Hallie, who was eyeing the cake the entire time and who gobbled up that first piece very fast. Then she played for 30 seconds, handed the toy back to me, ate the next bite of cake, and repeated the process for seven bites. It took a bit -- but just a bit -- of prodding to get her to eat bites eight and nine, but she returned to her eager eater self for bite number ten when I told her that she was "taking the last bite." And that was it. Ten minutes or less from start to finish.

I have no idea how it will go tomorrow or the next day or whenever Hallie returns to her non-eating self.

But what was clear to us is how much she understood of the process and what the expectations we had for her were. It's also clear to us that we need to give her more credit (and be careful what we say around her) because she really does take everything in. And it was also clear to us that, even though this is supposed to be our ritual, our super smart three year old is really the one who is in charge. This doesn't surprise me in the least. And Hallie being in charge is part of the solution, yet also part of the problem.

For those still counting, we are up to 253 vomit free days and hope to make it to the 270s this year. Thanksgiving complicated matters: Hallie went to bed with the beginnings of laryngitis on Thanksgiving eve and woke up with a fever on the big day itself. She was very sick all day, which led to two bouts of vomiting and lots of lying on the couch lethargically all day on Thursday and Friday. By Saturday afternoon she was on the mend and, other than a residual cough, she's fine now. I had the same thing, without the vomiting, earlier in the week so I felt a particular sense of empathy for Hallie. This was a short lived but miserable little cold and I know that I wanted to consume nothing but tea and soup all week. Given all of this, we stayed home on Thanksgiving (we are thankful for Whole Foods which was open until 1pm and provided Sharon and me with turkey and all the trimmings at the last minute). Sadly, we missed out on fun times with cousins, but it's better to have spared them this malady and clearly Hallie wasn't really up to playing anyway. Ultimately, we are thankful that Hallie weathers these little colds so well. It will never cease to surprise us, or her doctors, that Hallie's lungs are as strong as they are.

OK--off to bed. Gotta get up early so that we can go find some shoes for the girls (Lea needs to graduate from Robeez to something that doesn't leave indentations in her little fat feet) in preparation for the holiday card pictures we plan on taking tomorrow.

Thursday, December 3, 2009


This past weekend, we decided that it was time to add to our family. Sharon and I had been eager to get the girls a cat for some time now and the virtues of this decision were underscored by the absolutely fabulous time that they--and epecially Lea--had when chasing around Aunt Laura and Uncle Bryan's cat, Rocky.

Anyway, two weekends ago Sharon and the girls visited a shelter to see a couple of cats and none of them were terribly impressed. This probably wasn't the cats' fault; it's hard to tell what a cat's personality might be like when it's cooped up in a cage all of the time.

After that unfruitful effort, we decided to try to find a kitty that had been foster-cared. This was pretty easy to do. So, Saturday night, after it was clear that Hallie was on the mend (she had fallen ill with the laryngitis/fever virus that had struck me earlier in the week), we took a drive over to the Art Museum area to visit a woman who fosters quite a few cats (she is living with 15 right now, and three of them are hers). All of the cats scattered except for one: a pretty black boy cat who is about a year old. He followed us from room to room and seemed quite happy with us, despite Lea's over-eager overtures. The other cats were quite lovely, but this little black one was special. He had chosen us.

So, not an hour later, we ended up taking him home. The name he had in foster care was Nelson, but his new name, Zen, fits him so much better. He's been living with us for the better part of a week now and seems quite content here. He is the gentlest, most easy going cat you can imagine. And this is a good thing because Lea is neither of those things. She can't get enough of Zen and relentlessly follows him from space to space, intoning "Kitty!" the entire time. She loves to smooch with him, lay her head down on his tummy, and cuddle up with him. He basically tolerates all of this (and when he's had enough, he lets Lea know with a playful swat that has yet to lead her to incur substantial damage). Lea also loves his food and water bowls and is hearing a lot of stern "No, Lea, NOs" these days.

Hallie loves the idea of Zen but is much more cautious around him than her younger sister is. Zen likes to come up to Hallie and rub against her leg. When he does this, Hallie says "I sorry, Zen! Excuse me!" This is totally cute. But Hallie is warming up to him and trying to pet him (gingerly). And she was completely thrilled to give him catnip this morning and watch him go completely crazy for it.

Anyway, Zen is part of our family now and we love having him here. Welcome to our nutty world, Zenny!

Thursday, November 26, 2009


I think we're thankful every day for such wonderful kids who bring such joy to our lives (even if they also keep the producers of hair color in business, too), but we often don't take the time to stop and reflect on what we have and how grateful we are for it. So, even though it's pretty late, I just wanted to take a moment to reflect on all of the wonderful things that are happening around here and how thankful I am about them.

Hallie has been having a great week. Probably a lot of the 'off' stuff that we were seeing a couple of weeks ago was related to her coming down with a cold/fever, and not regression or anything ASD-related at all. This makes a lot of sense; I know that I don't function well and am out of sorts when I feel like crap (which I did this week, when I came down with my own cold/fever/laryngitis/sinus infection malady; let's hope Hallie isn't getting it). Anyway, once Hallie started feeling better, things really began coming together for her again.

Last Friday, Sharon and I had our first ever parent-teacher conference with Hallie's lead teacher, Ms. Kristen. I've gotten to know Kristen, as well as the other teachers, fairly well over the past five months and, of course, I'm in constant dialogue with Hallie's therapists, but this was our first sit down, official conference. Kristen had nothing but glowing things to say about Hallie: she finds her energetic (in an infectious, good way; when she comes in for her two afternoon days at 3:15, she appears to recharge the batteries of those kids who have been at school since early in the morning and whose energy is flagging); helpful (she loves to give out instruments to the other kids, collect trash, and is a masterful cleaner-upper); and polite. She also loves art and music and eagerly participates in story time, circle time, and all group activities. Apparently, her fine motor skills are improving and she's doing a ton of talking. While some of what she is saying is echolalic, this is true of several of the kids (who are not diagnosed with anything) and it's clear that Hallie comprehends and is following what's going on around her. She is also quite enamored of dramatic play (dress up) and is beginning to interact more with the other kids. She knows all of their names and greets them all by name, but she's now beginning to do more than this.

We know that the other kids really like her and that several of them ask after her each day, hoping that Hallie will be in class with them (she has an odd schedule which we adults find hard to follow; I can only imagine it's more difficult for the three year old set to recall which of Hallie's days are full days and which are part days).

Most importantly, Hallie is happy at school. She's adjusted really well, has not cried about going to school since at least some time in August and never wants to leave. Indeed, for the past week or so, whenever I come to pick her up, she happily shows me whatever toys she's been playing with and then sits back down to play some more.

Anyway, it was great to hear all of this. Now that Hallie is back to her normal self, we can see how good of a fit the YCCA is for her. That they emphasize music, art, and sensory activities and use those to teach academic skills seems great to us. Hallie has all of the academic stuff that she needs at this age down pat; we are thrilled that they are not drilling letters, numbers, reading, and such at school but instead focus on things like movement therapy, playing with textures, and teaching the kids a lot about music.

We think that all of this exposure to the social world of typical kids is really helping Hallie to advance her play skills. First, she is doing a lot more interacting with the other kids on the playground after school. When I picked her up last Friday, she asked to go to the playground (she's been doing this often) and of course I was thrilled. As usual, she swung a bit. But unlike in the past, when Hallie's made a beeline for the baby swings, this time she walked up to the 'big girl' swing and asked me to help her up. She then told me, "I swing on big girl swings!" and did just that. She's beginning to kick a bit, which is great, since I think her capacity to pump her legs is beginning to emerge.

Then, her friend Daria came over, and, after swinging a bit, asked Hallie to play with her. This time Hallie didn't ignore the request; she told me she was all done swinging and she happily joined Daria and Logan (a boy at her school) in a game of chase. She also went up to Logan and asked him if she could have one of his pretzels. Here are a couple of shots of the kids at play:

We're not just seeing progress in the area of playground skills, either. Hallie is also beginning to do a lot more real, functional, creative play. For example, last night she was building with her wooden blocks. Instead of just building a tower and knocking it down, over and over, Hallie built a couple of houses that looked like houses. I wish I had gotten a few shots of these. They were cool looking. Sharon, who is an architect, was quite impressed. Likewise, she's been using her Mr. Potato Head much more appropriately. Instead of having arms coming out of all of the holes, octopus-style, she made this lovely creature the other night:

Other than the fact that the guy was wearing lips as a cap, I'd say this was a pretty appropriate potato head.

Hallie's also been drawing with purpose, even if her creations don't really resemble what she says they are. She has been into Blues Clues lately, so I've given her one of my old notebooks. Tonight, she drew a couple of renderings of something that she called Spider Man and narrated her drawing for me as she made it. "Here are the eyes," she said, "and here is his nose and mouth. These are his legs. I draw Spiderman!" She was very proud of her drawing, and so was I.

But perhaps most important is that her pretend play skills are developing rapidly. Tonight, while Sharon was out standing in a really awful line at the UPS pick up center waiting to get a couple of packages, I was home with the two kids. Hallie grabbed one of her Lego vehicles, put two of her little figures in it, and started to drive it around. Sharon's backpack was on the floor in the living room, and Hallie had the vehicle drive up the side of the backpack, and said, "we're driving up the mountain!" Her vehicle then passed under the jumperoo and Hallie exclaimed, "we're driving through now!" It was good to see her creating a scenario for her little Lego people that was entirely unscripted; this was not something she had seen a character do on TV or anything like that. It was her own imagination that was in the drivers' seat.

This, a lot of dress up play (tonight Hallie was a doctor and she asked to listen to my heart; at other points this week she's been a "pretty princess" or a policeman) and some discussion of feelings (she turned to me tonight, while watching a segment of Elmo's World: The Great Outdoors that featured a lion and a bear, and said, "I'm scared; that's scaring me!") make it obvious to us that she is in the middle of a developmental spurt. We love it.

Food-wise, things have been going pretty well. Hallie is still not a big fan of eating because it distracts her from other, more preferred activities, but she's been enjoying some of what she's eating quite a lot. She was turned onto Cocoa Puffs by her cousin Adam, and has been munching them quite happily, asserting that they are "so yummy. Dee-li-cious!" And she is still in a toast phase, which is great. She also rather enjoyed several of the cookies I picked up at Isgro's in the Italian Market this week, though she would have preferred it had they been solid chocolate and not just dipped in chocolate.

Improved eating has led to improved growth: at today's checkup, Hallie was 32 lbs. 6 oz. and back at the 50th percentile for her age. Of course, she looks thin, but that's because she's shot up again and is now 39.25 inches (up from 38.5 inches), which is about the 75th percentile. And vomiting has stopped: we're now on day 245 and counting. What a difference this year is, relative to last year or the year before that.

Lea is doing great, too. She weighs in at 19 lbs and is 28 inches tall, which places her firmly at the 50th percentile for both. Her head is at the 75th percentile and is not much smaller than Hallie's (very small) head.

Lea is doing a lot of 'talking'; she is saying something that sounds an awful lot like "I got it!" (a phrase Hallie often uses) and "thank you". She is also trying to say "duck" and "teddy" and uses these words appropriately. When she is crying we hear something that sounds a lot like "mo-mm-y" but she's not really saying "mommy" or "mama" quite yet.

Lea has also learned to use her Fisher Price 'bubble gum' toy (where she hits a blue paddle to release the ball and turn on the music); loves her toy piano; and loves playing with the shakers and cymbals. And, basically, anything that Hallie does, Lea wants to do. She adores her sister and wants to emulate her every move.

Hallie feels the same way about Lea and the two kids often play together and crack each other up. Tonight, Hallie was on the couch and Lea signaled to me that she wanted to get on the couch, too. She climbed over to where Hallie was sitting, began to put her head in Hallie's lap, started playing with Hallie's hair, and gave her lots of hugs and playful slaps. Hallie thought it was hilarious. I thought it was sweet. Alas, I was unable to get a picture of the girls at play tonight, but did take this shot of them in the tub last night:

Given how crowded the Primo tub seems, I think we're going to have to just fill up the regular claw foot bathtub for the girls the next time the kids bathe together.

Anyway, that's it for now. Happy Thanksgiving, everyone, from our family to yours!

Saturday, November 21, 2009

Embracing the Craziness

I just spent fifteen minutes on the floor with Hallie and Lea ripping up pieces of paper (that in a former incarnation had stood in as some "Blue's Clues", replete with blue paw prints and all) and dumping them on the kids' heads. I'm pretty sure that you won't read about this sort of activity as a stimulating, engaging learning experience, but it epitomizes what we do when we "embrace the craziness," AKA practice Floortime/DIR.

Lea had been screaming non stop for a quarter of an hour because she's teething like mad. I was holding her on my shoulder while trying to get Hallie to eat something for dinner (tonight's goal: a half a piece of toast with fake butter. She had eaten the ends of a few fries, a lick of mini chocolate bundt cake, and a few veggie puffs designed for the newly-eating baby, but I don't consider that a decent dinner, despite the existence of the word 'veggie' in there. After all, those puffs have 25 calories for 75 of 'em and I can guarantee you that Hallie ate no more than 10).

So toast--the preferred food of the month--it was. But after three mini bites, Hallie put down the toast and got distracted by the TV (TV is our motivator for most things, alas). I paused the highly formulaic Wonder Pets episode and asked her to take another bite. But she moved on, and began to rip up some of the paper we'd used in our Blues Clues playing this morning. Try as I could, I could not get her attention. So what did I do? I took a page out of the Floortime book (so to speak) and began ripping up the paper with her. And then dumping it, confetti style, over the heads of both of the kids. Hallie instantly engaged with me and began dumping paper on my head, and on Lea's, too. She smiled wide, made great eye contact, and got re-engaged with me. And got her to eat three or four more bites of toast. So mini victory for me, and for Stanley Greenspan (the guru of Floortime).

Sometimes it is useful when I take my own advice. A week ago, Hallie's very excellent Special Instructor called me to ask me what I would do to re-engage Hallie when she seems disengaged. All I could think of at the moment was that A. should follow Hallie's lead and not worry about whether Hallie was talking. Step it down a notch, I said. Go back to basic sensory activities when pretend play seems beyond Hallie's reach. This is all the stuff I've learned in Floortime. Our goal is for Hallie to engage at level 6, developmentally and Greenspan-ly speaking. This level is all about complex problem solving. But most of the time, level 6, which is typical of 3-4 year olds, is beyond Hallie's reach. She is most comfortable at levels 3 and 4 and sometimes reaches into level 5. But she gets easily overwhelmed and when she is overwhelmed, we need to step it down a notch. Any engagement is better than no engagement. So whatever cartwheels you have to turn, or whatever confetti you need to transform paper into, to get her engaged is worth it. And it works, it really works.

Friday, November 20, 2009

Say "AAAH!": A Post About Dentistry and Medicaid

Two weeks ago, I took Hallie in to the Pediatric Dental Clinic run by CHOP at the University of Pennsylvania Dental School for her six month check up. I did this with some trepidation; Hallie is no big fan of dental work and is pretty averse to having anyone put stuff in her mouth -- this isn't just an issue of food. Who can blame her, really; she has a history of doctors shoving endotracheal tubes; oral gastric feeding tubes; small cameras; and a bunch of other medical devices into her mouth and down her throat and a very long history of plenty of stuff coming up out of her that should technically stay in her stomach.

On top of this, we have considerable mommy guilt about Hallie still being on the bottle and still falling asleep with it in her mouth. The dental attending whom we saw at CHOP/Penn last winter was unforgiving about this, to say the least, and put the blame squarely on our shoulders. In no uncertain terms, she accused us of being irresponsible, negligent, and even abusive parents who had done their daughter a serious disservice by not putting a G-tube into her tummy instead. When I plead my case, it fell on deaf ears. Thankfully, the dentist who actually performed Hallie's dental surgery (a thorough cleaning, x-rays, and an extraction) last February was far more understanding of our location between a rock and a hard place and wasn't into moralizing or reprimanding us. But still the mommy guilt lingers on: even if we know that Hallie can grow, or at least hold her own weight wise, by still consuming most of her nutrients from a bottle and that she went on a full food strike when we tried to remove it from her this past winter, and even if we know that we're sort of given a pass by virtue of the disabilities that we wish she did not have, it doesn't help to walk around thinking that we are harming Hallie, or at least her teeth, by not removing the offending bottle.

In the intervening months between last February and now, we've managed to get Hallie used to--and even fond of--brushing her teeth. At first, we just let her chew on the brush and put a bit of fluoride toothpaste on it for her. As it turns out, she much prefers our cinnamon flavored Crest to the bubble gum kid's variety emblazoned with the likeness of Dora the Explorer or Sponge Bob Squarepants. We then started to brush for her, and, over time, she began to open her mouth wider and wider for me and let me do an increasingly thorough job. She's now at the point where she will sort of brush her own teeth (though my efforts are more effective) and will ask to brush her teeth multiple times a day. She's even gotten good at spitting water out after she's done (indeed, this activity is one she finds extremely appealing). I haven't managed to get her used to swishing around fluoride rinse but that's something we'll continue to work on with Hallie. So, at least from the perspective of oral hygiene, we knew that Hallie's mouth is in a better place now than it was a year ago. Still, the nagging feeling that we're ruining her teeth with the bottle lingered on.

As it turns out, we were right and the Wicked Witch Dentist of West Philadelphia was very wrong: it wasn't the bottle that was eroding Hallie's enamel but the chronic regurgitation. Now that she vomits infrequently, she's doing a whole lot less damage to her teeth. (We're now at 239 days without vomit, and counting, for 2009). As it turns out, her mouth is in great shape and there has been no further discernible damage to her teeth this year.

But I'm getting a bit ahead of myself here.

To prepare Hallie for the visit to the dentist, we began by telling her social stories. I let her know that a dentist was going to take mirror, put it in Hallie's mouth, and use a big shiny light to see her teeth. Hallie and I looked at her teeth in the mirror and practiced 'saying Ah!' and opening wide. I told her that she would have to lie down on a very big chair and that the dentist would look and then brush her teeth for her and that it would not be fun but that it also would not hurt. We went over this scenario for a few days before the big event.

When we got into the dental office, Hallie was very cooperative, at least at first. The dental student showed her the mirror and allowed Hallie to play with it, look in it, and place it in her own mouth.

Matters became a bit dicier when the dentist actually had to reach in and have her own look around inside Hallie's mouth. This elicited some tears, but not too many:

Hallie did work hard at "being brave" and held my hand the entire time.

Matters got a bit worse when the dentist brushed her teeth for her, but not too bad. Since we are using a regular toothbrush at home, the dentist decided to use a regular one to do the cleaning, but showed her the 'tickle brush' (the electric version typically used for cleaning) and told her we would be using this one next time. We'll pick up a battery operated toothbrush to use at home in anticipation of this next visit, I think.

The only time things got really dicey was when they had to paint Hallie's teeth with fluoride for her treatment. Hallie's not a big fan of bubble gum flavored stuff, and, besides, the fluoride no doubt tasted more medicinal than bubble gum would have, so there was some gagging but no heaving during this procedure and we escaped the office in the same clothing in which we arrived and without leaving a pool of vomit in our wake. That was a pretty major victory, as far as I am concerned.

Unfortunately, upon leaving the practice area and going to check out, I was delivered the news that Hallie's insurance through Medical Assistance (Medicaid) had been canceled. Having to pay out of pocket and knowing that I was about to face a huge battle for reinstatement left me with a bad taste in my mouth.

(Note: it's not like we don't have private dental insurance for Hallie; in fact, we have her double insured for dentistry under our own policies. It's just that the CHOP Dental Clinic, which serves only those who are Special Needs or poor, only accepts Medical Assistance. And while there are pediatric dentists who do take our insurance, we were pretty badly turned off by the biggest Center City practice and unable to locate another private practice that was good at treating special needs kids locally).

By the time we got back in the car to go home, I had confirmed with the HMO that administers our Medical Assistance plan for Hallie that her insurance had, indeed, been terminated, effective October 31, 2009. This meant that bills for all the therapies that she had received during the week (Floortime/DIR; OT; PT; Speech; Special Instruction; and her Personal Care Assistant) were going to go unpaid. Even more significantly, it meant that all of these therapies were in jeopardy and might require suspension while I worked out this kink in the system. The cost of these therapies is probably in the area of a thousand dollars a week. I can't say for sure how much the total is because we never see bills; up until this point, they would just get paid. The only thing we ever needed to deal with was getting the proper referrals and prescriptions and calling to make sure that Medicaid, as our secondary insurance for Hallie, got billed for co-pays. But there is no doubt that the therapies are expensive and that having to cover them all while we worked out this problem would have been impossible for us to do; Hallie's therapy costs exceed our mortgage payment by about 200% and juggling both would have involved bankrupting ourselves and maxing out our credit cards.

So I needed to step into high gear and solve this crisis. Which is precisely what I did the second I got home. First, I went to this website put together by the Pennsylvania Health Law Project to bone up on the procedures for certifying that Hallie falls under PA Loophole 95, which allows disabled children to be covered by Medicaid in the state of Pennsylvania regardless of parental income. Then I got on the phone with my contact over at the Disability Rights Network of Pennsylvania to explain what had happened and to make sure that I was handling matters correctly. Both agreed that Hallie should not have been dropped from the Medicaid rosters in Pennsylvania; instead, I was supposed to have been provided with a written request for a review of her status to determine whether she was disabled and prior written notice that afforded me a ten day period to appeal any effort to disenroll her from Medicaid. We never received any of those things. Calling the local Medicaid office proved useless since it was impossible to get a live caseworker on the phone, let alone a person who knew anything about the provisions governing disabled children.

Thus, I spent the better part of last Thursday evening assembling all the documentation that we might need to re-apply for Medicaid for Hallie and filling out the forms at the Department of Public Welfare's website. And on Friday morning, I high tailed it down to the local DPW office to submit all of this stuff in person. Fortunately, we were in the midst of a transit strike in Philadelphia. While this made my life more miserable since it entailed a long walk back into Center City from the DPW office (happily, Sharon dropped me off there on the way to work), it meant that the office was less crowded than it typically is and I was able to get in and out of there in under four hours. And it is a good thing I went in person; not only did it mean not having to risk losing original copies of Hallie's birth certificate and Social Security card, but it also meant that I didn't make needless errors on the extraordinarily confusing (even for me) paperwork that would have resulted in the whole thing being bounced back to us for completion.

So I got the paperwork in, but then the question became: how in the world do I fast track it? That's where my contacts over at the Disability Rights Network and Health Law Project really came in handy. I felt like it was a pretty major victory that we managed to get Hallie reinstated for Medicaid in two full working days: by early Tuesday morning, her case was provisionally approved and her bills were being paid again. It was kind of a no-brainer: Pennsylvania is a very liberal state when it comes to insuring children generally and covering the medical costs of those with disabilities in particular. Both Hallie's global developmental delays and her diagnosis of Autism Spectrum Disorder, for which we have corroborating paperwork, easily qualifies her for coverage. Sadly, this is not the case in many places in this country. But, what really helps is that I am very familiar with the law and with where one must go to find help in making sure that it is implemented correctly. Trying to get this done without intercessors who knew how to contact the proper people within DPW and actually had sufficient clout to get them on the phone, make them pull up Hallie's records and review them on the spot, and then authorize a status change, retroactive to October 31st, would have been, as Hallie likes to put it, "very too hard."

So, all in all, it was a minor hassle and I still have to figure out how to get our out-of-pocket dental expenses reimbursed, but all's well that ends well. And, most importantly, Hallie's teeth are fine and we don't have to put her under for another dental surgery any time soon. But I definitely could have done without the drama and the wasted time and the crisis mode into which this little event thrust us.

Monday, November 16, 2009

Meeting Ralph

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Last weekend, we took Hallie, Lea, their brother Jake, and our friend Eliza Grace to see Ralph's World at the World Cafe's Peanut Butter and Jam kids' series. Hallie became quite enamored of Ralph's World this summer when her preschool class learned (and later performed) two of his classic songs, "Happy Lemons" and "Surfin' in My Imagination" (Hallie calls the former "Lemonade Song" and the latter "Surfing Song." Hallie gave Jake a CD/DVD set of some of Ralph Covert's classic songs and we later purchased her a copy for her own enjoyment. This has gotten a lot of airplay at our house and Hallie was suitably thrilled to be able to catch Ralph in person.

Ralph was greeting the kids as we arrived and Hallie got a nice big hug from him (and confirmation that he was going to be playing the "Surfing Song."

Hallie, Eliza, Jake, and Lea all had a ton of fun during the concert. Unfortunately, some pretty silly parents (that would be us) forgot our camera at home and, as it turns out, the iPhone does not take great concert shots (unless you like the quasi psychedelic). Hence, we'll re-direct you to Eliza's blog to see just how much fun the kids had.

We did get one sort of OK picture of Hallie, Lea, and Jake all in the same frame:

Notice the intense look on Hallie's face. As it turns out, she was fairly subdued (when not bopping with Eliza) not only because she was coming down with some sort of preschool crud (perhaps the flu, perhaps not...all we know is that she ran a fever from Monday through Wednesday of last week, recovered on Thursday, and was back to her usual fun self by Friday). She was also really taking in the whole experience. When I picked her up from school today, a full eight days after the event, she was still talking about the concert. At first I had no idea what she meant when she told me, "I go to concert." I asked her aide, F., whether the kids were planning another concert and whether they had rehearsed a song today. F. responded that they had had music, as usual, but that nothing special was in the works. Hallie apparently understood my confusion and elaborated, "I see Dinosaur Song. I see Puppy Song." And then she began to sing the lyrics to the 'Puppy Song' for me, just in case I still had no idea what she was talking about. Anyway, I totally got it and told her aide what was going on. Hallie smiled very broadly in response to what I said to F.

As is the case with most songs that Hallie loves, she knows these lyrics by heart. She also can replicate basic choreographic moves that she's seen performed in person or on television. Her mastery of song and dance is rather impressive. Now, were it not for the fact that the kid has a paralyzed vocal cord that makes her voice little and raspy and some delayed gross motor skills that impact her capacity to dance, I'd say that she could easily aspire to a career in theater and dance. Even given her limitations, I'm not sure I'm going to rule this out just yet. The kid has music in her genes (literally, since her donor's family is quite musical, and professionally so) and clearly loves music and performance.

This all points to something else that's quite important: apparently Hallie does have some pragmatic language skills, after all. We just all need to know her well enough to provide the context for her, and she'll let us know what she's thinking.

On a related, but different topic: Hallie has some cute new phrases that she likes to use. Among our favorites (and, by the way, she seems to be getting what we mean when we say 'favorite' since she now uses the word herself) is: "That's very too hard." She uses it absolutely appropriately, like when she cannot get a zipper started, even after she tries and tries to do so.

Sometimes it's pretty hard to understand what Hallie means, but with some work, I'm beginning to find that it is rarely 'very too hard.'

Nine and a Half Months: The Lea Update

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Lea continues to amaze us. She is a very interactive little girl who likes to get into all things, and especially all things Hallie. This has added to the drama in our home, and the frequency with which the words, "No, Lea! NO!" are uttered around these here parts.

At 9.5 months, Lea has a bunch of emergent words:
  1. Uh-Oh
  2. Yay!
  3. Hi!
  4. Teddy
  5. Bye!
  6. and perhaps "Mommy!" (she certainly whines 'ma-ma-ma-mee' when she wants one of us--usually Sharon--when we've left the room or have failed to attend to her quickly enough).
Lea is also babbling a lot and chasing after toys (a wiffle ball, a drumstick, and a teddy bear being among her favorite, but cars are also a big draw for her). She can let go and remain standing until she remembers that she has let go of whatever surface, at which point she falls on her bum.

Lea also has at least six teeth, and we'd venture to say that four more are emerging. Hence, she has spent many sleepless nights awake (I guess that's a redundancy; in any event she is often up at some subset of 1am - 5am, which makes the rest of us quite cranky).

Anyway, we're thoroughly enjoying Lea, who is thoroughly cute, despite our sleeplessness.

Wednesday, November 11, 2009

Halloween Season 2009

One of the wonderful things about the fall/winter holiday season is that the holidays fall in such proximity to one another that it prevents those of us bloggers prone to bouts of procrastination from doing so indefinitely. Anyway, that's the motivator for finally getting this post up and running and, in contrast to a couple of the most recent posts, this one is going to be heavy on the pictures and light on the commentary.

Halloween season got off to a roaring start with a visit to the Please Touch Museum for their members-only Halloween event. We went at the gracious invitation of Hallie's friend, Alex, who was extremely excited to have her little buddy with her for the occasion. The museum was packed with kids and, at first, Hallie found the whole thing a bit overwhelming (and overstimulating). But, after a bit of adjustment, Hallie settled right in. She began her visit with a fun carousel ride, which was of course fitting given her costume choice:

Then, after some time at a few of her favorite exhibits, Hallie, Sharon, and Alex and her mom, Sheila took in a puppet show. We weren't quite sure whether Hallie would enjoy the actual show as much as she liked the idea of it, but, as it turns out, she had a splendid time and talked about the puppet show for days. The characters included a pirate, and that's always a good thing. Hallie loves pirates and likes to walk around covering one eye with her hand or a spoon and saying "Ar Matey!" while holding her telescope up to the 'working' eye. I think there may have been a duck involved, too. I'm not sure because I was speed-walking Lea through the museum while she napped. Anyway, the puppet show was grand and then we repaired to the Please Eat cafe where we grabbed a dinner of pizza, apples, and juice boxes. Hallie did eat some, but the highlight of her evening meal was collecting the trash--all of ours and some of other patrons, too--and throwing it out. It was nice that she felt so comfortable walking up to strangers and asking them if she could toss out their garbage.

The next day we paid a visit to the Johnson Farm with Hallie's preschool. I don't know why I thought this--perhaps it was the homeyness of the name?--but I thought we were going to be going to a relatively small working farm with a little pumpkin patch and a tiny petting zoo, all scaled to the size of your average three to five year old. Instead, we got this. I should have known that any locale with a spiffy website and that sells its pies online would be the opposite of homey. The place was buzzing--with people and bees--which makes some great sense the weekend prior to Halloween. The huge hayrides were very full; the pumpkin patch was enormous; and there was a performance area set up that featured locale country acts; 4H dance troupes and the like.

It was also very very hard to find the other members of our group (we were, admittedly, a bit late, as is par for the course with us. The part of Medford, NJ where the farm is located is a great deal further than we thought and we needed to stop and pick up a pizza for Hallie's lunch). We did finally meet up with our fellow YCCAers--a few on the hayride and in the pumpkin patch and more at lunch time.

Anyway, the experience was pretty overwhelming for us adults, but Hallie seemed to have a pretty good time.

Here are the girls on the hayride en route to the pumpkin patch:

Here's Lea in the pumpkin patch:

And Hallie:

Here's Hallie trudging alongside Sharon, who was in search of the perfect pumpkins (more on this later). This took entirely too long and the kids were all a bit antsy. It didn't help that Hallie kept tripping over the pumpkin vines on the ground.

You can get a sense of just how big the pumpkin patch was from this photo.

And here they are on the way back:

After lunch, Hallie was excited about jumping in the bouncy house (she LOVES these):

And she proved just as excited about visiting the animals on the farm. I'm pretty sure, given how many times Hallie returned for large handfuls of corn, that the pigs were quite overfed that day:

She also found the playground area to be pretty grand and had a wonderful time sliding through the PVC piping tunnel that they had set up for these purposes:

When we got home, it became abundantly clear to me that all that time that Sharon had spent in the pumpkin patch assessing the individual merits of each pumpkin really paid off. You see, she was on a mission. A couple of years ago, Aunt Laura had given us pumpkin decorations that she had made when the two oldest cousins, Sarah and Megan, were little. Even though Megan grew up not watching Sesame Street (since Sarah was too old for the show by the time Megan came around) and hence thought that Big Bird was in fact Big Yellow Chicken, she definitely knew who these two guys were:

Hallie had a blast making them. We were very impressed at how much power of concentration and attention she brought to this art project. School is really paying off in this respect. Hallie was very proud of the final project. She was proud to pose the little finger puppets in front of their pumpkin likenesses:

Lea also got in on the action:

I think this is a fitting tribute to Sesame Street on its 40th birthday, don't you?

The next week brought the YCCA Halloween parade (see my Pumpkinhenge post above for more details on this...) and the main event, the big day itself.

We were thrilled because our friends Anne, Eliza Grace, and Bessie (Anne's mom and Eliza's Nana) came down to join in the festivities.

When Eliza decided at the last minute to jettison her Native American garb for that of a ballerina, Hallie followed suit. Soon, our two little dancers and their entourage were ready to hit the neighborhood:

The girls both proved to be very quick adopters of the trick-or-treating ritual:

Here's a nice shot of Eliza and her Nana trick-or-treating:

While collecting candy was definitely fun, what's even greater about Halloween in our neighborhood is that there's this one block where the residents close off the entire street and everyone, regardless of whether they have kids of trick-or-treating age, gets into the holiday spirit. Not only do they give out vast quantities of candy, but they also set up craft tables where kids can decorate their own gourds; color pumpkin or witch or similar cut outs with markers; watch as their balloon animal of choice is blown and twisted; or oversee the production of pom-pom spiders. Our girls had a blast doing all of these things:

The whole group had a grand time and we got home to our place in the nick of time to avoid a major downpour. After a nice visit, our friends headed back to New Jersey.

The next day, Hallie sampled some of her loot. It turns out that, though she doesn't eat much at one sitting, she very much enjoys chocolate (Hershey's bars, Kit Kats, and Reese's Peanut Butter Cups all pass muster, even if she takes a few small bites of each before moving on, and Hallie's fairly willing to sample--or at least open--anything that comes in a wrapper that might pass for junk food). She also finds cheese balls (but apparently not cheese puff sticks) quite delicious and has a fondness for bats-and-jacks pretzels. Now if you could only pass off green beans as junk food by giving it a pretty colored paper wrapper...

Anyway, that about sums up our Halloween fortnight!!! But even though the holiday is over, costume-, pretend-play and some candy eating live on (though not much this week, since Hallie's been home sick and not feeling up to eating much; probably it's H1N1 but we'll never really know for sure. Whatever it is, the fever is down and has been gone a whole day now and we've gotten away without any respiratory issues whatsoever, so we're pretty happy right now. Just two days of vomit, likely due to antibiotics to treat a suspected ear infection. So we're now up to 230 days without vomit this year for those of you still counting).