Insight into Hallie's Mind

Having found her voice (or having been given a new, temporary one by the wonderful ENTs at CHOP), Hallie has turned into a chatterbox lately.  We love it.  She still has conversational skills that are well behind those of her peers, but she's making progress and we are so grateful for this and I think that Sharon and I know that there is no going back--we need to make sure that Hallie keeps her voice.

Anyway, since Hallie is talking more, she is also providing us with greater insight into how she thinks about the world.  She had the following conversation with Sharon last night which is interesting on a couple of different levels:

Setting:  Sharon came home late from work last night after running a couple of errands related to our little family party for Lea today. So there had been no time for dinner (and I suspect that Sharon did not have much time for lunch, either, since she was catching up on work having spent the prior two days dealing with doctors visits, sick kids, lost car keys that led to a major crisis that was ultimately resolved when we discovered that Lea had hidden the car keys in our nanny's mitten, and a bunch of other fun stuff like that).  So Sharon was starving and her stomach began to growl a lot as she was reading Hallie her stories before bed.

Hallie looked over at Sharon sympathetically and said:  "Mommy, you have a tummy ache!  Don't worry mommy, I will get you some water and you will feel all better!"

Hallie proceeded to get out of bed, run over to the bathroom, climb up and get down a dixie cup and fill it with water, bring it over to Sharon and ask her to drink it.  Sharon, of course, complied.

Hallie, satisfied, declaimed:  "There you go mommy!  You will feel all better.  You won't have a tummy ache anymore."

This was such an interesting conversation.  First, it shows how empathetic Hallie is.  She notices when others are in need and she really tries to help them.  She is constantly getting things for Lea (and Lea, having learned at the feet of the master, reciprocates by getting stuff for Hallie all the time.  This of course does not prevent them from having knock down, drag out fights over stuff just like any other healthy sibling dyad).  And she uses her own experience to try to figure out how to help others, which makes perfect sense (though down the road I suspect that we will need to work with her on that ever important theory of mind issue to help her figure out that others might want something different from what she desires).

But this was really interesting on another level:  it is clear that, when Hallie says that her stomach hurts, she means (or at least sometimes means) that she feels hungry.  But she has no idea that this is what is going on with her body.   It may also be clear now why it is that she constantly requests water.  She drinks tons of water, all day long.  This is a great thing for her body in general, but not a great way to satiate hunger.

One interesting thing that lately has struck me about autism, or at least Hallie's version of it, is that the communication deficit that is so central to this condition is not just related to communication with the outside world.  Rather, Hallie has trouble communicating with herself.  And if you cannot interpret the signals that your own body is sending you, of course you are going to have problems communicating with others and interpreting their body language, right?  This may be why professionals have noticed that sensory integration problems are prevalent in autism.

Anyway, while all of this is extremely interesting from an intellectual standpoint, what I want to know is how to help Hallie make those connections so that she can feed her hunger appropriately.   Conventional feeding therapy doesn't really do the trick (and it's certainly not going to teach her how to interpret hunger.  It  kind of does the opposite).  If anyone has any ideas about how to do this, please let me know!

A Major Milestone

Hallie hit a major milestone today:  for the first time ever, she expressed an interest in baking with me.

Cooking is something I have long look forward to doing with the girls.  Way back when Sharon was pregnant with the twins, I used to walk around talking about how we'd hold 'clinics' in our kitchen where I'd teach them all about spices and how to make flavors 'marry'.  We could have 'spice of the week' weeks and 'guess the ingredient' games and do other fun stuff like that.  And this, of course, would be part of my special time with the kids since I love to cook and Sharon, to put it mildly, does not.  Well, actually, that's not necessarily the case:  she has no idea whether she likes to cook because she doesn't cook at all.  When I first met her she literally had the following in her fridge and cupboard:  salt (which she enjoys more than your average individual does); sugar (purchased for her by someone who wanted to add some to a cup of tea or coffee); Lays potato chips and cheddar cheese (eaten together as a dietary staple); and a stick of butter.  So living with me has been both incredibly frustrating (we have a million things in our fridge and tiny kitchen cabinets and this array is ever expanding) and yet delicious (I hope) since I can whip up a fairly decent gourmet meal at a moment's notice.  Should all the stores in Philly close down for whatever reason, you probably want to head here since I am fairly certain we'll be able to hold out for a few weeks or months with what we have in house.

So, given how much I love cooking (and shopping for cool ingredients), it's been doubly sad that Hallie has such a fraught and negative relationship to food.  It meant that we could not share something that I really longed to share with her.  Lea seems to be heading in the exact opposite direction (she loves to eat, but is especially fond of fruits and veggies and will try almost anything, even foods that are a bit adventurous for a 2 year old like pad thai and curries).  

Anyway, I am sort of digressing.  To return to the subject:  on New Year's Day, Hallie requested chocolate chip cookies.  We didn't have any pre-made ones in the house (I tend not to buy store bought cookies, with the exception of graham crackers and Oreos since she'll eat those).  So, being the mom that I am, I offered to whip up a batch of chocolate chocolate chip cookies for her.  Half an hour later they were ready and, wouldn't you know it, she ate a few.  She proceeded to eat a couple more per day, every day.  She would often just eat part of a cookie and then move on to another one (who knows why Hallie does this, but this is a pattern even when there is no discernible change in taste from one portion of the item to the next.  For example, she'll nibble all around the edges of a Ritz cracker and reject the middle).  No matter about the discarded half-cookies; I considered it a major victory that she was willing to eat something that I actually made from scratch.  (FYI:  I do not consider toasting wheat bread and smearing it with butter to be real cooking).

The kids finished up the last of the cookies this morning and I offered to make some more.  I took the butter out of the fridge to bring it to room temperature and set up the Kitchen Aid Stand mixer on the counter (some day I would enjoy having a kitchen big enough to allow me to leave it out all of the time).  I was taken aback, in a very nice way, when Hallie asked me if she could help.  We read through the ingredient list together and she helped me measure out the white and brown sugars and the flour and cocoa.  She was excited about cracking the eggs (which she did very carefully with my assistance) and eagerly smelled the vanilla.  Dumping the ingredients into the mixer was a hugely fun endeavor but each time I got ready to turn it on, Hallie announced that she needed to go into the living room to hide since the mixer was too loud.  I tried to keep the loudness to a minimum (I only really needed to turn the mixer on high to cream the butter and sugar; the rest could be done at a slower and quiet speed).  And by the end, when I was mixing in the flour, I was doing it at a very low speed to avoid blanketing myself and the kitchen in flour (I hate when it poofs up and coats everything because I forget to take this precaution).

I was in the midst of doing this when Hallie ventured into the kitchen and asked if she could help.  Apparently she was no longer afraid of the mixer.  So she climbed up on the step stool and watched as the flour went in and then dumped the last couple of quarter-cups in as the mixer did its stuff. 

The batter was basically mixed and I turned off the Kitchen Aid and lifted up the arm.  Hallie looked at the batter and said, "That looks yummy; can I taste it?"

I have never heard a more wonderful question in my life.  I responded, "Of course!  You can even lick the bowl!"  So I knocked most of the batter off of the spatula and beater and gave them to Hallie.  She ran to the living room and went to town:

She came back to help me mix in the chocolate chips (which she sampled first; she loves chocolate chips) and helped me form the cookies.  She was eager to make sure that they turned out right and so she asked for (and received) a flashlight that would allow her to examine their progress through the oven window.

I am happy to report that they turned out fine.

What a lovely way to spend part of the afternoon!  I couldn't have asked for anything nicer.

"Oh Cr@p!"

I have lots more to blog about, if I ever get the time. But this brief post takes preeminence over my more substantive musings.

Anyway, yesterday afternoon, I was trying to give Hallie her prilosec-in-applesauce before Hallie headed off to the Camden Seaquarium with her friend Alex. Most of the time, Hallie is fairly cooperative about taking her applesauce, even though she does like to negotiate about how much she needs to eat.

She is not a particularly good negotiator. Our conversations go something like this:

Mama: Hallie, all you need to take is seven bites.
Hallie: Two bites!
Mama: No, Hallie, there are more than two bites. I might be able to do it in six bites.
Hallie: TEN BITES!
Mama: You've got a deal

No real negotiating yesterday, alas. Hallie was super tired (she had a fun filled day with her cousins on Saturday and not enough sleep on Saturday night and no nap on Sunday). So she was relatively uncooperative and highly squirmy. All of that squirming, going limp, jello-legging resistance caused Hallie to get worked up and this, on top of the fact that we accidentally skipped the prilosec on Saturday (because Mama was remiss in her packing again) led to a bit of refluxing.

Hallie gagged a bit, coughed, spit up a mouthful of refluxed goop and exclaimed, in precisely the tone that I typically use: "OH CR@P!!!"

Sharon and I looked at one another in disbelief and cracked up.

Apparently, we really need to watch what we say around Hallie more carefully.

But on the upside, I think Hallie's pragmatic, spontaneous speech is coming along quite nicely, don't you?
***
On related note: the reflux/urp was a pretty unexpected event. Hallie has gone at least three weeks without visibly refluxing and, other than that bout at the beginning of the year following her pneumonia, there's been virtually no vomiting at all this year. We're at 45 vomit free days (out of a total of 52), which is pretty darned good. And she is eating a relatively large quantity (for her) of cow's milk at this point: she has taken a liking to chocolate milk and might have an ounce or two at a time (it helps to tell her that her cousin Hannah likes it, which is absolutely true, and chocolate milk gained even more cache when her friend Alex exclaimed that chocolate milk was delicious). She also has been consuming about a third of one of those small cups of Ben and Jerry's vanilla ice cream at a time (she did not, however, like the strawberry -- or pink stuff, as Hallie called it -- at all). And she voluntarily sat down at the table on Friday night when Taylor was over and consumed about several decent sized bites of spaghetti with a very cheesy tomato sauce and pronounced: "spaghetti is DEE-LICIOUS. I LOVE SPAGHETTI!" while doing so. Now, of course, what she loves is the routine of Taylor coming over to dinner and all of us sitting down and eating. But that's fine with me---that's a good thing to love, and if she takes a few bites of food with us, I am very happy.

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.

Lea's New Skills

This week, Lea learned how to clap her hands. While we did a bit of coaching to teach her this new skill, it was far easier for her to learn how to do this than it was for Hallie. One of the moms on a listserv to which I belong noted that full-term younger siblings of micropreemies practically raise themselves. We definitely concur.

So, we can add to Lea's skill set hand clapping to playing peek-a-boo; crawling like a demon; cruising on furniture; eating pretzels and graham crackers with aplomb; and chasing after and securing any item her little heart desires. She's also a championship-level pincher and biter (mostly of Sharon), but I'm no sure we want to celebrate these aspects of her character.

Anyway, I caught a video of Lea clapping in her swing (with shameless prompting by yours truly). Hallie wanted to get in on the act, so I took some footage of her using the chair in our living room as a trampoline. She is very resourceful about finding ways to meet her vestibular and proprioceptive needs and we are happy to indulge her (especially considering that we never intend to move with the living room furniture. Why not let her trash it? It's not like we have room for a trampoline and so Hallie is happy to call this her trampoline and let us know how much she loves jumping on it).




On other Hallie fronts: somehow I missed this milestone, but Hallie has now had 203 vomit-free days this year. She's been great, really. She's eating (grazing, mostly) quite well these days. She had had a cold ten days or so back, and her intake plummeted, as it does for most kids, but she's making up for things now. She loves toasted bread with butter, requested a sandwich (which, for her is toast smeared with spreadable goat cheese) last night at dinner time and actually ate about half of the half-slice of bread and cheese that I presented to her; and she's eating chicken hot dogs again. We've taken the pressure off of her, and us, and that has been a good thing. Snacking in front of the tv or while playing is not precisely our idea of a family meal, but at least, this way, Hallie does come running over to the table and gladly takes a seat with us when our friends come over to dinner (apparently, the two of us eating alone, or the two of us plus Lea in her high chair don't make the grade for Hallie). And not only does she come running over to sit with us, but she will request some food items (chocolate cake or cookies are her favorite). So, right now, this is enough for us. We need to take it slow and did I mention that a decrease in pressure is a good thing?

Still working on that long post of how far Hallie is coming along...

Raising the Nicest Kid on the Block

Hallie's in the middle of a developmental explosion and we're loving it. As she communicates more, and more fluently, with us, it's become clear to us that we've managed to raise a little girl who has a great deal of empathy with others and who is generally helpful and nice. We're not really sure what we did right, but we could not be more pleased with the results.

The other day, I was preparing dinner in the kitchen while Lea was in the exersaucer and Hallie was playing in the living room. Hallie came running into the kitchen and announced to me: "I go help Baby Lea!" and ran back into the living room. Of course, 'help' can take many forms in the three year old mind, so I did what any moderately sane mother of a preschooler and infant would do in such a context: I followed Hallie, just in case her notion of 'helping Lea' differed from my own. What I saw was this:

Hallie, as she is now wont to do, was narrating to Lea: "Mmmmm...Water good! Drink water Lea!" And Lea, being the little sport that she is (and very adventurous and curious in her own right), was playing along. She tried her very best to master the art of drinking water from a straw cup but couldn't quite get it together. Still, she very much enjoyed chewing on the straw (something that her big sister gets a kick out of, too, which accounts for our many jagged silicone straws). And Hallie felt very helpful.

Hallie also enjoys trying to give Lea her bottle. I caught one shot of this on camera:

You'll notice that Hallie doesn't quite get the whole gravity thing so she isn't aware that she needs to tip the bottle at an angle so that the milk can flow. She also doesn't quite understand that Lea must latch onto the bottle to drink milk. So occasionally Hallie's ongoing efforts to provide Lea with her bottle at all points has led to a little spilled milk around here. (No crying over it, though. It's been a month since we had to supplement Lea's diet with some formula since it's impossible for Sharon to find sufficient time to pump at work, but Lea is still about 75% breast-milk fed and we no longer feel pressured or guilty about this since Lea is obviously thriving).

And Hallie is just generally a wonderful and adoring older sister. She loves to bring Lea toys (sometimes depositing these on top of Lea while she is asleep) and every morning when she wakes up, all she wants to do is hug and kiss and play with Lea. We took this shot of the girls (on Hallie's prompting) this morning (with Hallie very happily smiling for the camera, which is also a recent development):

And most days, when I go upstairs to get Hallie after she wakes up from her nap, she announces to me: "I go find Lea Pia!" (this is one of our nicknames for Lea) or "I find Baby Lea NOW!" And, if Lea is upset for some reason, she asks us to sing her, and chimes in on, the silly Lea Pia song that I made up for Lea. She vastly prefers this song to her own (which is equally silly and entitled "Hallie Go-Bally")

But Hallie's sweet streak is not reserved for Lea. It turns out that Hallie has become a very polite kid who is pretty good at sharing. I credit this not only to lessons learned at home but to the excellent teachers who emphasize this skill at her preschool (which she sorely misses and which starts up again tomorrow--though she was all prepared to return today...when I got her into the stroller to take her to feeding therapy today, she announced to me: "We going to fun preschool now!"). Case in point: this past weekend, Aunt Laura and the kids gave Hallie a Radio Flyer scooter as her belated birthday present. All the kids were excited by this and, even though Hannah and Adam got out their own more advanced Razor Scooters, they both were interested in taking turns on Hallie's shiny new red one. Hallie was a bit upset at first when Adam started to careen through the house on her scooter, but did her 'waiting sign' (we have taught her to sign "Wait" in ASL when she needs to wait for something and she now does this reflexively...it's a great sign since it allows one to fidget with one fingers which is pretty perfect for kids with sensory issues who have trouble waiting and need to do something with themselves in the meantime). When Adam returned on the scooter to where Hallie was standing, Hallie turned to him and said, "Now Hallie's turn, please!" Sharon convinced Adam to more or less graciously disembark and let Hallie have a ride around the house. Hallie took the scooter for a spin, returned to Adam, got off the scooter and said to him, "Now Adam's turn!" We were very proud of this behavior. Turn-taking is not something that comes naturally to kids (who are, after all, pretty darned egocentric) but somehow Hallie really has begun to assimilate this skill. She's demonstrated this recently at play with her peers and we couldn't be more pleased about this.

And speaking of playing with peers, this past weekend when we were down at the cousins', Hallie began to initiate play with them, and not just follow along or do parallel play. She did this again last night when Karina popped over for a bit. She was very comfortable saying "Come on, Karina," and showing Karina the toys in which she was interested and how she wanted to play with them. We're very much hoping that Hallie is able to do the same thing with her friends at school tomorrow.

And, speaking of tomorrow (which is, indeed today), I've got to go turn in so that we can get up early, feed Hallie breakfast, and get her off to school by nine.

But one last note on the feeding front: Hallie, who is very susceptible to peer pressure, decided to finish off Hannah's peanut butter sandwich on Saturday and had no bad reactions to it whatsoever. She's eaten bites of peanut butter sandwich a few times since then at home (she can make it through about a quarter to a third of one sandwich). This is exciting because it gives us a new protein source and one that is naturally packed with calories and fat and easy to bring to school (her school permits peanuts since there are no kids who are deathly allergic to them, at least at this point in time) and pretty darned age appropriate. And Hallie has been enjoying toast with butter (fake butter) and cheerios for breakfast a lot, too. She's also become a fan of spaghetti and other long noodles (like lo mein) and the other night had some spaghetti with tomato sauce that also contained a nice quantity of spinach and some Italian sausage. She even entertained the concept of eating a piece of broccoli that accompanied a veggie lo mein I bought for her at Whole Foods (she identified it, told me it looked like a tree, touched it to her lips, licked and nibbled it and announced "Mmm....broccoli good" before discarding it). She doesn't eat much, but she is eating enough. More importantly, we've taken much of the stress and pressure out of eating and hopefully this will make mealtimes more enjoyable for her. And, along with this, she continues to not have major vomiting episodes. We are up to 170 days without spew this year and are loving every day of it!

Eating at the Table

 

Still working on my mammoth preschool post, and several others. But meanwhile, we have some breaking news: Hallie is no longer eating in front of the television but at the table, with her family. We started this trend this past weekend, when we were down at Aunt Laura's and Uncle Bryan's house to visit with the cousins and rest of the family and take Hallie to her hippotherapy evaluation. We decided that, enough was enough: the TV is a major distraction; takes away from joint attention with real, live people; protracts mealtime in a deleterious manner; and is downright annoying. Plus, it really wasn't helping any more--she ate no better in front of the television than she might otherwise have done (which is to say, she eats poorly in both cases). So we fed her with her cousins at the table for most of the weekend. At least this way she'll have family meals.

I have to say that, so far, so good. Meals are shorter (around 45 minutes), more enjoyable (most of the time), and more normal. Plus, we get to eat (even if it's just a bit of the same stuff that we're feeding Hallie). We've moved the high chair to the table (we still need to use this or else we end up with meals that consist of four or five bites) and set up our second high chair for Lea (who is eating rice cereal with us at dinner).

We do end up reading with Hallie or coloring, but at least these are joint activities. Hallie can't really have a conversation with us that is substantive; we've tried asking her about her day, but her capacity to discuss things that she might have done out of context is limited, to say the least, and all parties end up feeling frustrated. We try hard around here not to make mealtime (or speaking, for that matter) more frustrating than it already is for Hallie.

So far, save some behavioral stuff at the tail end of meals when Hallie really has had enough of sitting there (even if she hasn't eaten as much as a typical kid might at a meal), we've had no major meltdowns. I've started having Hallie take responsibility for cleaning up her food. She won't use a plate, but she will replace all of the leftover food on her tray into the appropriate plates or dishes and help wipe herself and her tray down. And if she does pitch a bit of a fit, she needs to tell me that she is sorry. The rule is: we'll try to respect her (within reason, so, no a two bite meal is not good enough) and she'll try to respect us. At least we've got the rudimentary building blocks of etiquette even if she can't really handle spoons too well and likes to use her fruit purees (of which she is eating less and less these days) as a sensory tool (think fingerpaints).

And, as of today, we've hit 140 days without vomit, which is just a little bit shy of the number of days without vomit that we experienced in all of 2008.

We're hoping that the feeding therapists at Thomas Jefferson University, where we just completed yet another feeding evaluation, can help us in this process. They take the absolute opposite approach that CHOP does, which is to say that they are not using a behavioral approach (which often is tantamount to force feeding in our estimation) but a more child-directed approach, to improve mealtimes. We'll find out some time next week when they can work us in for weekly sessions.

It's sort of funny and sort of sad that it's so hard to find time in Hallie's schedule these days. She's the quintessential over-scheduled child, but rather than partake in T-ball and soccer and dance and gym classes, she goes to occupational therapy, hippotherapy, feeding therapy, and DIR/Floortime therapy, on top of her 17.5 hours per week of preschool, 3.5 of which are devoted to OT, speech, special instruction, and theoretically PT (but not actually, since there is no physical therapist who can visit her yet and the folks that run the 3-5 program are gleefully violating Hallie's IEP...presumably they will be doing so a bit less gleefully when I get back in touch with the nice lawyers at the Education Law Center with whom I have been having some interesting conversations of late...). Anyway, we were considering adding in private speech therapy and a social skills class on top of this, but, frankly, there's nowhere to add these. Besides, as Steve, Hallie's Floortime therapist, asserted the other day when I was discussing this with him at the beginning of Hallie's session, it's not clear that Hallie is ready for social skills classes yet--she needs to be able to fluidly complete 50-60 'circles' of communication (not just speech but gestural, body language, etc) in order to get the most out of a social skills group. Hallie can currently complete 20-30 on a good day, but this is still a lot of work for her and, so, what we need to do right now is focus on getting her to another, higher developmental stage.

Which brings us to issues related to preschool, and that needs to be in another post because it's already plenty late around here and I need to get some sleep before I begin my own over-scheduled day in a few short hours.

Irony

Well it seems that Lea isn't going to have any difficulty in the food department!

 

While she loved her apples and rice cereal so much that she grabbed the spoon out of Sharon's hand and started to feed herself, she was even more eager to snatch pizza from Sharon's plate:

 

Now if we could only get the teething thing under control, we'd be set. The last several nights, Lea was inconsolable between midnight and 1:00am. At first, I believed it was me and the fact that I lacked what she really wanted and that she'd be okay as long as she had mommy (and her milk) available at night. Last night we confirmed that nothing and no one really could make her feel any better. Poor kid! But hopefully the teeth will come in soon and we'll get a reprieve.

Partying with Hallie

First off, let me just say that we did not forget to celebrate Hallie's birthday. We are merely running a bit behind where blogging about it is concerned. I'd like to think that this is solely because life got in the way of blogging again (and it has; between preparing for Hallie's party, actually celebrating the big day, and then following it up with a stellar little sleepover by our friends Anne and Eliza Grace, who beat us to the blogging punch and already have an update out about this, it's been quite busy around here. But the other, less fun reason for our conspicuous lack of birthday blogging has to do with Hallie's latest eating strike, which has, until today, had us adults (me, Sharon, and the fearless Nadia) feeding Hallie for way too much of the day, which leaves far too little of the day (or night) left for blogging. Hopefully we have put an end to this, at least for the meanwhile, by putting Hallie back on periactin (an antihistamine which also happens to be an appetite stimulant), so we've been granted some reprieve. At least for now. (And for those of you still keeping count, we're now up to 112 spew-free days).

Birthday festivities got off to an early start when Hallie's first friend and NICU primary nurse, Ellen, popped by with three balloon--one in honor of Hallie's birthday, a second in memory of Olivia, and a third for Lea--and some cool gifts for our girl, including a DVD of Mary Poppins, which I am sure Hallie will really enjoy.

The kids really enjoyed the balloons and Hallie even let Lea play with hers for some time:

 

Of course, Hallie quickly commandeered all three of the balloons (and hence deprived Lea of her balloon-gazing; I am sure that the day is not far off when Lea defends herself from toy-and-amusement-snatching perpetrated by her older sister, but right now Hallie definitely has the upper hand in things). We did little on the actual day of Hallie and Olivia's birth, but we did have a grand time on the weekend. Hallie's party was held at a local kids' gym and most of her favorite people were able to make it to the festivities (even us, but just barely: while the car was all packed up with sodas and goodie bags by ten o'clock, it took longer than average to feed Hallie her breakfast. On top of this, Whole Foods' pizza chef forgot to make her the goat mozzarella pizza that I had commissioned, so all of us just barely made it to our kid's event. Alas, this is par for the course around here, but happily, it wasn't a big deal and everything else went off without a hitch).

The unfortunate thing about gym parties, however, and particularly those involving trampolines, is that the subjects which us parental types are trying to capture on digital media, are constantly in motion. So many of the shots I got with our camera (which doesn't handle indoor photography as well as I'd like it to even under the best circumstances) were none too fabulous.

Happily, Anne did get in some good shots. I managed to figure out how to copy the entire album into blogging from her Shutterfly account, but not individual pictures. If anyone remotely more tech-savvy than I am cares to guide me through this process, I'd love to hear how this can be done.

Click here to view these pictures larger

Eliza Grace was one of five micropreemies in attendance that day. Look closely at the slide show and you'll see several pictures of lovely Nina Fox. We were also lucky to have among us three other 23 weekers, Elizabeth and our friends Sydney and Payton, whom we know from the ICN at Pennsylvania Hospital. They were born about five weeks before Hallie and Olivia and their mom, Madaline, helped guide us through the NICU experience back in the old days. Suffice it to say that the micropreemie cohort was decidedly over-represented at our little shin dig, and with good reason.

We were also lucky to have lots of family at the event. Grammy, Aunt Laura, and cousins Sarah, Hannah, and Adam came down to help Hallie celebrate and big brother, Jake, helped introduce Hallie to the mysteries and wonders of being three. Finally, our event was made extra special by our friends: Charlie and Aaron's mom, Sara, who is very very creative, volunteered to make Hallie a lovely giraffe birthday cake that was also allergen-free (and burned herself quite badly in the process). The cake came out great, but Sara's arm is worse for the wear and we hope that it's feeling better now. And we were thrilled that Alex's mom and dad, Sheila and Brett; Sam's mom and dad, Elisabeth and TJ; and Taylor's two moms, Renee and Kim, were there to help Hallie usher in her big-kid status. (Hopefully I've not succumbed to horrible mommy-brain and left anyone out!)

Anyway, like I said, none of the pictures we took are much to write home about but we did get some quasi decent shots.

Here's one of Hallie, Hannah, and Adam on the trampoline:

 

Hannah and Hallie are doing ring-around the rosy with Eliza Grace in the background:

 

And here Alex is getting in on the ring-around-the-rosy action:

 

Basically, Hallie would do ring-around-the-rosy forever if she could. She's really into kids' dance and music routines generally right now (no doubt this is Barney's influence) and I suspect that she'd do pretty well at a dance class (were her schedule to permit this).

No birthday party would be complete without a blowing-out-the-candle event, and we did that twice at Hallie's party last Saturday (mostly because we were too daft to have cameras prepared to capture the event the first time around).

 

Hallie loved the singing and even managed to help blow out the candles. The practicing we did earlier in the week really helped her understand what was happening and what was expected of her. Of course, she needed no prompting or practicing when the time came to open her numerous presents!

Even Lea got in on the party action: she had a grand time being held by her big little cousins:

 

 

Anyway, a grand time was had by all and we continued our celebration with Anne and Eliza Grace, who spent the night. Eliza feasted on the tops of many Whole Food chocolate cupcakes and we had surf and turf, courtesy of our grill. The next day the girls woke up and had a nice bath together and we all headed out to the Please Touch Museum, where the kids ran around, played, and had a great carousel ride.

 

 

There's a lot of good stuff happening in Lea's life, too, and she is the subject of my next post (hopefully to be composed some time really soon!)

A Hundred Days in May!

Yes, folks, we actually hit that milestone today.  Woo hoo!  For those of you not following this thread of Hallie's story, this means that she has had a 100 spew-free days this year.  100 out of 148 days doesn't seem to bad to us, particularly in comparison to last year, when we only hit this milestone at the very end of August, or the year before, when we never even came close to this milestone (back in 2007, I think we had a grand total of 16 days without vomit).  Anyway, we're thrilled and we hope that our saga of decreasing paper towel usage and emergency middle of the night bed stripping and trips to the washing machine will provide some hope to parents (and kids) who are still in the midst of vomit hell.  It can get better.  

Hallie and Lea had a great day all around.  Hallie has really been into trying to draw her own hand.  This started on Monday when I traced her hand on construction paper as part of her mealtime distraction.  She thought that was wonderful and insisted that I do this many many times in many many colors.  On  Tuesday, she grabbed some paper and crayons and brought them over to me during playtime for a repeat performance of hand drawing (she was not all that thrilled when I tried to turn a brown hand into a turkey in true preschool instructor form, but that's okay since we're a long way off from Thanksgiving still).  Then, when I had to stop drawing with her to take care of Lea, she grabbed a crayon and attempted to trace her own hand.  Today we tried to teach her how to go around her fingers with the crayon and she did a pretty good job of it.  

Hallie also had a grand time painting and then finger painting during Early Intervention OT.  She really loves to paint and must have spent at least ten minutes of uninterrupted attention on this today.  She was particularly fond of us painting her hands so that she could make lots of handprints on the paper and very quickly figured out how to paint her own hands.  Ultimately, she was a big mess, but a happy one, and I do have to remember that we need another IKEA stepstool so that she can wash her hands at the kitchen sink since going up our steps to the bathroom would have tracked paint everywhere.  Hallie still cannot climb the stairs holding onto just a hand or a banister--she needs both--and crawling would have left lots of handprints on the risers of the steps that would have been a pain to clean up (even with washable paints).

One of the things that was really interesting to me is that Hallie ate VERY well after finger painting.  She downed an entire hot dog (without skin), a bunch of cheese, quite a bit of watermelon, some prunes, and a couple of ounces of milk within a half hour or so and with no protest.  She still needed her usual TV distraction but I wonder if giving her some sensory input that stimulated her tactile senses helped her eat more effectively.  I've got to try this again to see if this is a pattern.  If so, there will be a lot more finger painting around here on a regular basis.

Hallie also did great at private OT today.  Our regular OT was off on her honeymoon, but having an unfamiliar person fill in did not phase Hallie in the least.  She went into the room, took off her shoes, got on the mat, and proceeded to do her swinging-on-her-tummy-while-picking-up-beanbag-animals-and-tossing-them-into-the-barrel routine with great attention.  She also quickly mastered a new obstacle course (crawl through a tunnel, pick up a puzzle piece, climb over a tumbleform, place puzzle piece in the puzzle, and then repeat another dozen times) and even pretty happily attended to a table-top activity (not her strong point, in the least) for about three minutes after that.  The second table-top activity (stringing beads on pipe cleaners) was a bit of a hard sell for her, though.  She was tired, and though she had no trouble with the actual task since she really is using both of her hands bilaterally much more easily these days, she was done with OT by that stage.  It seems like she has the capacity to follow structures for 45 minutes, with some breaks and change-ups, but fatigues after this.  I am not sure if this is because all of her therapies have classically been 45 minutes long or whether it's because she's two, or whether it's because, given her generally low tone, her body gets tired being 'on' all the time.  Anyway, it will be interesting to see how she adjusts to preschool, which is obviously longer than 45 minutes, in a few weeks from now.

Hallie is also beginning to further expand her speech.  Today, as usual (despite injunctions placed on this practice), she climbed up onto the pack and play and grabbed a picture down from the bookshelf that it abuts.  She brought it over to me and said:  "Picture of Lea!"  Of course, it was a picture of Hallie back in the NICU, but pretty much any baby picture these days is a picture of Lea.  She totally loves her little sister and is excited when she sees her or any representation that might be her.  And, if Lea is not with her (for example, when we go off to therapy without Lea), she gets very concerned.  She looks over at the empty carseat next to her and says, "Lea!  Lea!  Where'd she go!"  And, when she wakes up in the morning, the first person she greets these days is Lea.  She'll often climb over me to get to her sister and wave at her and say "Hi, Lea, Hi!" or "Lea, wake up!" (which is usually not what I want Lea to do and definitely not what Lea wants to do at that moment).

Lea, meanwhile, was her super cute self, as usual. She's talking a ton right now and sounds pretty much like a little kitten meowing when she does. I think she's just exploring the different sounds that she can make with her voice, and that is very cool to see (and listen to).  

Lea had a very nice day and was chill throughout all of it, until 10:30pm, when she just wanted Mommy to come downstairs and feed and hold her.  The pattern around here is that Sharon takes Hallie up to bed somewhere between nine and ten pm and spends about an hour upstairs.  Lea's internal alarm seems to go off somewhere around ten and eleven and, after that, she really needs Sharon to comfort her.

And, speaking of Sharon, one of the projects that she worked on back at her old job just won an AIA (American Institute of Architecture) award.  I am very proud of her.

Finally, Sharon called the hippotherapy center down by her family (who live on the Jersey Shore) and hopefully we'll hear back from them soon.  I think that hippotherapy will do a world of good for Hallie and I can't wait to see her astride a horse.

The First Seventy Five Days!

I figure that, with all of this media hype about the first hundred days of the Obama presidency, that Hallie's accomplishments over this past four month period require some touting, too. So I will begin with the major milestone: 75 vomit free days so far this year. And lately we've been averaging only one day a week that doesn't go as well as expected. For us, and for Hallie in particular, that's huge. And, on top of this, we've dropped down her dose of reglan considerably (from about 8 ml a day to 2 ml a day) and halved her dose of axid. We're not seeing any increased reflux, even through a couple of late winter colds and the sudden onset of really awful spring allergies.

To what do we attribute this sudden, and happy, turn of events? What we think is going on is that Hallie's food sensitivities and allergies have finally begun to abate. We haven't done a thorough scientific study of this (they were awfully hard to assess scientifically to begin with since they are purely GI events and are not histamine mediated). But we do know that Hallie recently has had some food that is technically unsafe for her and that, in the old days, would have provoked huge amounts of spewing and that, this time around, she seems to be okay. These foods include a rather yummy flourless chocolate cake from Whole Foods that will be our dessert of choice at Hallie's upcoming third birthday in a mere six weeks if she keeps this up! We're not ready to put her on cow's milk or eggs or anything but we're no longer quite as concerned if she gets into something unsafe or requests a bite of some heretofore forbidden fruit or decides to steal something like ricotta cheese ravioli off of Jake's plate, as she did during a recent visit:

 

Hallie has taken a strong liking to spaghetti sauce and even managed to eat a whole ten rotini in sauce at feeding therapy this past week. So, while we do know that tomatoes are technically a fruit, we nonetheless are counting them as a veggie and can happily say that Hallie has her first consistently-eaten vegetable (other than potatoes). We're still trying to wear down her defenses against carrots and green beans, but we'll take what we can get! Our sense is that it's going to take a very long time for Hallie to trust food generally and that we are still going to have to go quite slowly in our efforts to introduce her to stuff. But as of this month, she has eaten and likes the following foods: apples, pears, prunes, plums, goat milk and cheese, french fries, chicken hot dogs, bacon, fish sticks, potato chips, oreo cookie middles, pasta with sauce, and watermelon. That's about double what she was eating as of December and we're hopeful that we can get to 20 foods by the end of the year.

Along with her eating milestones, Hallie is also developing well in other ways. Her speech is getting much clearer and robust. She now regularly says the following:

-When playing with her animals or pretending to be them: "A (fill in the animal) says (fill in the sound)"
-When building with her blocks: "I build!" "How tall" and, my favorite, "it felled!" (this exclaimed upon knocking down whatever tower she was constructing).
-"I thank you!" whenever I give her something she has requested.
-"Watch Elmo's World Wild Animals" when she wants me to put on one of her favorite DVDs.
-"I play outside" when she wants to go to the playground and "bye-bye playground" when she leaves the park (she uses the ---'bye-bye (fill in the blank)' construction a lot when she is transitioning from an activity.

Additionally, Hallie has a ton of words and more and more emerge every day. She consistently uses plurals and gerunds (-ing) endings now and her pronoun usage is pretty good. She seems to understand past tense endings (hence the "it felled" construction which, while technically erroneous, demonstrates an understanding of how the crazy English language works). And, most importantly, her speech sounds pretty darned spontaneous these days and now includes quite a bit of impromptu singing.

OK--Lea is waking up. I will post this now and try to do another update later.

Hallie's Eating Update

So it's been an adventurous six or so weeks around here. Taking care of Hallie full time (since I am on leave and we're still without child care, I've been the one who has been doing this most of the time) has been good for her eating in some interesting and significant ways. I've been a tad bit hesitant to post about this for fear of jinxing things (in the past, every time I mentioned that she was okay with something or another, this ended up being followed by a pretty bad bout of vomiting and a total reversal in trends). But we're now far enough into this process to note some advances publicly to the blogosphere.

OK--so here's what has been going on. Late this fall, we began to express concern to our pediatrician that Hallie's eating habits, which consisted largely of us feeding her purees and little in the way of table foods--just french fries and potato sticks, were becoming a problem. It's hard to conceive of sending your child to preschool, for example, when she cannot feed herself and when her entire diet consists of goat milk, goat cheese, goat yogurt, potatoes, pears, prunes, and apples. So we decided to try to allow her to graze a bit and eat some more age appropriate foods and a broader variety of them. Our pediatrician empowered our now former nanny to take charge of introducing Hallie to some new foods. We were given veto power over stuff (something that did cause some tensions, but in the end, we're the parents and that is our prerogative) but the nanny was going to do the food trials in case there was something we moms were doing that was provoking Hallie to vomit or refuse food.

Not much happened in the way of progress. We discovered that Hallie really doesn't do well with berries (they appear to disagree with her tummy and lead to increased reflux) and that she is okay with pureed sweet potatoes and carrots (at least in rotation in her diet) but not much else. Our old nanny was feeding Hallie stage 2 and 3 baby foods and not much else. The rationale here was that this would rule out 'mechanical' (as in, she choked on something or had a problem with texture) vomiting, but did not advance her eating skills to anything beginning to approach age appropriate. We wrangled a bit with the nanny about macrobiotic diets and the introduction of green superfoods (she implied that this was the answer to Hallie's problems; we thought that this wouldn't work too well for a kid whose only protein source was goat derived and who could not tolerate soy well). But we got nowhere fast in a hurry.

Early this winter, we met our super fabulous feeding therapist, Barbara. Barbara watched Hallie eat hard (mozzarella) goat cheese and apple and pear slices and quickly ascertained that, while Hallie is a very slow eater, there was nothing wrong with her chewing or swallowing. The kid lateralizes very well and knows how to move food around in her mouth with her tongue and while her swallow is a 'hard' one, she manages to do it quite well. She just needs some extra time with things and Barbara hoped that, with practice, things would improve. This was good to hear because it gave us the go-ahead to play around with food textures.

At about the same time, largely because of our little three-year-old neighbor, Adam, Hallie began to take increased interest in new foods. At Christmas dinner at Adam's house (also residence to his mom and dad, Barbara and Chris, and older brothers Benjamin and Conor), Hallie expressed fascination with Wheat Thins (as she pointed out, they are 'squares' -- which she pronounces 'fares') and ate a few happily and with no discernible negative impact on her system. That was when we began to suspect that she was okay with wheat and that the patch test done by her allergist last year was either a false positive (it was borderline, but the allergist had us pull wheat) or that she had outgrown her sensitivity to wheat. Either way, getting wheat back into her diet was HUGE. It opens up a whole array of erstwhile forbidden foods.

Here Hallie is mostly playing with a piece of pita bread (which she calls "pizza"):

 

It turns out that, for whatever reason, Hallie is not a huge fan of baked goods. This is very sad. There is nothing better than fresh-baked bread in my book. But she has at least tried mouse-like bites of toast, has gnawed on a bagel, has eaten a few animal crackers here and there (I highly recommend the vanilla flavor by Barbara's Bakery...they are a major step above your traditional animal cracker), and has even eaten a few Newman's Oreos (she likes the cream but doesn't seem fond of the chocolate cookie. I'll try to get a hold of the vanilla version if they make them to see if those are more to her taste). But the key here is that she is not sensitive to wheat. And this meant that I was free to try fish sticks.

Fish sticks, perhaps because they are fried (I bake them in canola oil) and salty (Hallie loves salt and in this way really takes after Sharon) are more to Hallie's taste. While she's no championship level fish stick eater, she has managed to eat one or two of these at dinner (we buy the Mrs. Paul's version since they don't contain egg or dairy; a lot of other brands have one or the other listed on their ingredient panels). She prefers her french fries, so we have to bribe her with fries to finish her fish sticks, but the point remains that she earned herself another age appropriate finger food.

After we determined that she was not having any negative response to fish sticks, I decided to try salmon. This was a big hit (I drizzled baked salmon with olive oil and salt) and she managed to eat about a half ounce or so at a sitting. Can you say Omega 3 fatty acids? Next up was smoked trout---a major winner where Hallie was concerned. I am guessing the salty smoky flavor really appealed to her on this one. Smoked salmon, for various reasons, was not so much of a hit. Perhaps the chewy texture got in the way for her. But no big deal--we have fish. Which also means we had a second major protein.

Next up was chicken. I found a brand of chicken nuggets that were both safe (no egg, soy, or dairy) and kid-friendly (reconstituted nuggets as opposed to chunks of chicken breast). Hallie managed to eat a whole nugget once but was none too impressed with these (perhaps not salty enough?) I tried to get her to dip the nugget in honey mustard but she was having nothing of this (she is not a big fan of dipping and doesn't like to mix things with things--I think this is all behavioral and perhaps even typical toddler shenanigans). But she did not have an adverse reaction to the chicken, either. Which allowed me to try something else:

Chicken hot dogs. Hallie loves the idea of hot dogs. After all, the Pigeon of Mo Willems fame, finds one and thinks that they are "Yummy, yummy, yummy." While she liked the taste of beef hotdogs when we tried these way back when, they clearly did not agree with her system. But now that we had chicken, I thought we could give this one another whirl. And so I bought us some Empire Kosher Chicken Hot Dogs (because they are kosher, there is no chance in the world that there is cross contamination with milk products). And they were a winner. Or should I say weiner?



Anyway, she loves these and can get through about a third to half a hot dog, cut up in chunks, in one sitting. This may not sound like a lot to the average person, or even average toddler, but for us, this is HUGE.

Just to make sure I was counterbalancing our foray into kashrut (Jewish dietary laws) with something a bit more treyf (non kosher, in Yiddish), I decided we'd try bacon next.



And this, too, was a huge hit. Indeed, bacon may even be Hallie's favorite food right now (perhaps even surpassing french fries and Lays potato chips). She can eat about a slice at one sitting (again, chunked up and stripped of those fatty bits that never quite cook up to crispiness).

So we have a full line up of protein right now: goat milk, goat cheese, goat yogurt, fish of various sorts, chicken hot dogs, and bacon. We can broaden things from here as Hallie's tastes mature (perhaps). Chicken lunch meat was okay but she wasn't thrilled with it. Ham might be an easier sell. I bet she'd like salami or bologna but I need to find an all-pork brand (or a safe chicken brand; I'm fairly certain Empire makes a kosher chicken bologna).

Bread and pasta not being well-loved items, but Hallie will eat small handfuls of honey-sweetened puffed wheat. And perhaps we'll try oats again, which will open up an array of cereals.

We're not giving up on bread, though. I did find a 100% canola oil margarine and slathered that on a half a toasted bagel and Hallie did seem to like it a bit:

 

Veggies are still an issue. She does small amounts of sweet potato puree but is not all that interested in the sweet potato fries I made her. I might try a commercial brand of these if I can find ones that are not coated in rice flour (we're trying to do one thing at a time to make sure that we know what is going on with Hallie digestively). Hallie does, however, like asparagus. She stole one off of Sharon's plate and ate most of it. Subsequently, she's eaten a few more but tends to rip them into tiny strips (they are very fun to peel and appeal to Hallie, who is a major peeler of crayons). Hallie also seems to like romaine lettuce (but it, too, is more of a plaything than a food to her). I'm not sure what we'll try next in terms of veggies. Maybe beets are a good candidate. Or fried eggplant or fried zucchini.

 

Still, all in all, we've tripled the variety of food Hallie is eating and we've now gone over to a system where she eats table foods (we have to dole out a few chunks at a time or she gets overwhelmed) for the first half of each meal and purees for the second half. Meals are still long, drawn-out processes that take an hour to complete and we need to coax, prod, beg, and bribe Hallie to eat and drink most things. But she's doing it and we're mostly making progress. We have had some regression and some behavioral outbursts; trust me, the only thing more infuriating than Hallie throwing all of her food and banging on the tray of her high chair while declaiming "no throwing" is when she repeatedly spits out every bite that she takes and self-induces bouts of vomiting. But we're trying behavioral techniques (in other words, we're ignoring this behavior) when it happens and most meals this week have been relatively smooth going. Hopefully at some point she'll decide that she likes something well enough to eat it on her own and without positive reinforcement, but we try to remember, when we get dejected about how much time we spend feeding Hallie and how much effort we still have to put into this endeavor, that we are worlds away from where we were even six to eight weeks ago.

We are somewhat concerned about Hallie's weight right now, but, again, we need to remind ourselves that she had a bit of weight to spare and that our goal is to get her eating more and better in the long run and that we might have to tolerate a weight plateau or even loss in order to achieve this goal.

Meanwhile, we've also managed to keep the vomiting in check. January was a stellar month -- she had 26 vomit free days. February was not quite as good -- only 7 days without spewing -- but we did have a lot going on including a cold, a suspected ear infection and a major surgery. March has been pretty good so far, with 8 out of 12 completed days being vomit free. So, compared to where we were this time last year, we're doing great with 41 days (out of 71) of vomit-free existence under our belts; we were at 20 on March 13, 2008, so we've more than doubled our record!

Anyway, so that's where we are on the eating front. If anyone has any suggestions about foods we might try, please let us know!