Speech, Speech!

Wednesdays are speech therapy days around here:  Hallie has a half an hour of private speech (and an hour of private OT) in the morning and then an hour of speech at school (which runs coterminous with the Social Skills Inclusion Program that she attends there) late in the afternoon.

While that's a lot for a kid to do in one day (it amounts to 3 hours of therapy, broken up by lunch and playtime), Hallie approaches therapy as if it were play (we used to tell her that we were going off to play with so-and-so but Hallie knew better and started calling it therapy, so now we do, too).  As long as the therapist is a good fit for her*, Hallie works really hard in therapy and likes to please whomever she is working with. 

(*One should not underestimate the importance of a good working rapport between a child and his or her therapists.  There are many therapists and teachers out there who should not be working with kids, or at least not with Hallie.  We usually give them a few weeks to a few months and if they still deem Hallie to be a difficult child or try violate her trust, we fire/replace them.  Likewise, if Hallie has been working with someone and makes no progress in a three month period, we discontinue therapy and look elsewhere.  In such cases, the therapist may be well-versed in whatever it is that s/he does, but it simply is not something that works for Hallie.  The best therapists we've had have looked at Hallie as an individual and figured out what turns her on and then uses this as an avenue for helping her learn to do something that is hard for her to do on her own).

Anyway, I digress.  Back to yesterday.  E. came out of the session with Hallie a few minutes early so that she could talk to me about Hallie's recent progress.  Lately, Hallie has really made great strides in dealing with the problems that she had been having with pronoun genders (she used to mix up 'he' and 'she' and 'him' and 'her' lately; now she gets these right about 80% of the time); with sequencing (being able to organize cards logically so that they show the evolution of a simple narrative sequence); and with describing objects in more robust terms.  She is also doing a bit better in terms of answering "what" questions and in beginning to discuss simple subjects in a free-form way (things like her family, what she did that day, etc.). 

All of this is very good.  The only problem is that this may in fact disqualify her from receiving speech therapy paid for by our insurance.   While, even in terms of these aforementioned exercises (and even more glaringly in real life, a topic to which I shall return in a bit) Hallie is still quite clearly behind most of her peers, she is not necessarily sufficiently behind them to receive therapy.  Apparently the range of 'normal' speech is still quite broad at age 4.5 and one has to be quite a bit behind the lowest level of what is deemed normal to qualify for services.   This is something we're going to have to test (quite literally):  there are a lot of very different assessment tools out there and some of them do a better job than others of evaluating preschool speech.

You might ask me why am I not more excited that Hallie is on the verge of placing out of private speech services?  I think this is a fair question, but it has a pretty complicated answer.  First off, let me state that I am nothing short of thrilled that Hallie has been making so much progress.   She is a hard little worker and she is cognitively quite bright.  She can follow directions pretty well (even for a kid who quite obviously has problems with attention and focus and eye contact and stuff like that) and learns things very, very quickly.  I think all of this will serve her extremely well.  She also generalizes well (though this sometimes can be a problem.  More on this later, too).

But all of that being acknowledged and celebrated, there are some problems with Hallie's speech.  Most of them have to do with pragmatics.  I blogged about this before (and sadly will probably do so again). The issue is that none of the assessment tools (and none of the insurance agencies and educational institutions that rely on these assessment tools for evaluating and treating speech disorders) account for problems with pragmatic speech.  She still had a very difficult time extending communication beyond a formulaic social greeting (she easily says "Hi So-and-So" but has no idea where to go from there) and cannot easily initiate, let alone sustain a conversation beyond one to two very basic turns.  So, for example, she might say to a peer who has a crayon that is the same color as the one with which Hallie is drawing, "Look, we match crayons!" (she loves doing this because she is extremely enamored of matching and categorizing concrete objects).  But beyond, perhaps, saying something like "we both have black ones," the conversation goes nowhere.  This does not become an avenue, perhaps, for discussing even the fact that they are both drawing pictures of dragons with their black crayons, let alone a more abstract and less concrete discussion about their lives.  So no using this conversational turn as an opening for talking about how they both went to parties and had fun in the bouncy house or got new toys from Santa or ate too many cookies or watched a new princess movie or whatever it is that typically developing four and a half year old little girls go on and on about.  Rather, Hallie will note that the crayons match and move on (as in, retreat into herself) from there.

Can Hallie put together a four or five or seven word sentence?  Sure.  Can she use more than two adjectives in that sentence when prompted (turning that black crayon into a big, fat, black crayon)?  Sure.  Can she tell you that so-and-so also has a black crayon and that that makes two black crayons?  You betcha.  But can she sustain any sort of conversation with her peers?  No way.  She might, under duress and extreme prompting, sustain two or three turns with us or a therapist (and in our world this usually involves redirecting her attention at least twice and asking us to look at us in the eyes numerous times).  But this does not make age appropriate speech.


Conversations are always easier (if the above seems easy to you) when they relate to concrete things (like matching crayons, or toys, or clothing) rather than abstractions.  It is enormously hard for Hallie to discuss her feelings (I actually think that it's really hard for her to feel her feelings), especially when these feelings are complicated.  So, she might be able to say that she feels sick and even tell us where (her tummy hurts), but this is pretty concrete.  She cannot tell us that she felt sad or mad or angry when another kid took her toy (though she can act out that anger, at least when it is directed at Lea).  Rather, even when she is the victim of a Lea toy snatch, and even if she is actively engaged in attempting to grab back that toy (and/or pummel Lea), when we attempt to turn such (frequent) events into a teachable moment and ask her, "Hallie, how does it make you feel when Lea takes your toy?" Hallie will respond, "I feel HAPPY!"  She is so very clearly not happy, but we think that she cannot own the feelings of anger and sadness.  First, she has been taught the formulaic phrase "I feel HAPPY!" in much the same way as her first (and not terribly good, and certainly not understanding of Hallie's differences) Early Intervention speech therapist taught her the phrase, "I want please Mommy X" which then got used in lieu of all other spontaneous speech utterances for about six months.  So the only feeling she can name is HAPPY, even if she can feel a much broader range of emotions.  Second, it's really hard to voice anger and sadness when you live in Hallie's world, which is one in which she is so anxious to please everyone.  She is apparently afraid of letting us down.  There may be even more to this inability to voice emotions, but that's my thinking about it for now.

Other sorts of abstract utterances, such as describing what she did today or talking about the weather, the seasons, what is going on at school etc---anything which relates to discussing that which is not in the lived moment---are likewise very very difficult for Hallie.  This situation is beginning to improve a bit so now we might actually learn something about her day from her (but we always need to corroborate this with an outside source who might be able to inform us whether they really did read a particular story, play a particular game etc).  But this skill is slow to emerge.

Even slower to emerge (read: non existent) are complicated "Wh" questions.  Hallie has one question that she asks, which is "What is" that?  She will ask this about things and about people (she modifies the latter a bit and inquires, "What is that named?")  But everything is a what.  There are no "who"s, "where's, "when"s, and most certainly no "why"s.  Hallie asked us "why" once, eleven months ago, and has never uttered the word since then.  We are constantly setting up why questions for her, and also asking her to answer our "why"s.  Hallie has learned (because she is good at generalizing formulae) that one answers a "why" question by beginning her retort with the word "because."  So she does that quite consistently.  The only problem is that her "because" clauses often bear little to no relationship to the questions themselves.  So, for example, you might ask Hallie "Why didn't you eat your toast?" and she might respond "Because it makes you so happy!"  (again with that happiness formula).  Causality eludes Hallie.  Curiosity does not:  Hallie is curious about the relationships between things and loves to read and wants to know what is going on in the world.  It's just that the sorts of relationships she sees between things may very well be different than the ones that we typically focus upon.  I don't quite have a better way of understanding, let alone conveying, this phenomenon.

So the question remains:  can this stuff be taught?  I do think that the social niceties can be taught and that, as Hallie matures and fills in the developmental blanks (which she is doing quite well with the help of Floortime/DIR and her social skills training and just plain maturity, because let's not forget that Hallie does have delays on top of her disorders) that it is likely that she will make further progress on these harder-to-assess fronts, too.  I just don't know what the timetable might be, let alone the route this progress will take.  I do know one thing though:  it will take a lot of hard work, drilling, and the involvement of very good, very attuned-to-Hallie professionals to teach her the things that she needs to know.  This is where our Developmental Pediatrician is spot-on:  Hallie is very bright and is of above average intelligence and learns quickly.  However, the nature of her particular disorder is that she will need to be taught many of the things that typically developing children pick up on their own.  This is why we need to try our best to keep receiving good speech services for Hallie.  We are very involved parents, and certainly we can (and do) read up on how to help Hallie and we apply the lessons we learn from Hallie's various therapists at home so that she gets far more than the seventeen hours of formal therapy she receives outside of the home.  But while we are part of a therapeutic team, we are not therapists ourselves.

One final speech concern:  lately, Hallie has been attempting more spontaneous speech at home.  This is wonderful.  It often involves trying to tell us about stuff that is important to her and, even though we parents aren't all that interested in the TV characters of whom she is enamored, we are always eager to hear what Hallie has to say.  The only problem is this:  the less scripted, the less formulaic, and the longer these speech utterances are, the more likely Hallie is to stammer/stutter in her attempt to get the words out.  She'll often get caught on the first few words of her longer (say seven to ten or so word) sentence and repeat the opening phrase two or three times before the rest jumps out.  Her articulation is very clear, but the words get stuck.  Maybe it's an executive planning issue.  Maybe it's an anxiety issue.  And maybe it's simply a developmental stage.  Whatever it is, I am careful not to finish her sentences or make a big (or even little) deal of it.  Coincidentally, I heard a very interesting show on Marty Moss-Coane's Radio Times (a locally produced, very good NPR news show) titled, "Struggling to Speak," that relates to stuttering and the new Colin Firth/Geoffrey Rush film, The King's English.  Marty had on the film's screenwriter (David Seidler) a well-known local chef, Marc Vetri, who is a lifelong stutterer, and the head of the stuttering program at CHOP.  This provided a lot of food for thought, so to speak, and also another resource to check out if Hallie's stutter gets worse or causes her further anxiety.

Speaking about CHOP and anxiety, all of us have a bit more of this than usual:  on Monday, we'll be heading over to outpatient surgery at CHOP for Hallie's first, temporary vocal cord bulking.  We are all eager to hear what Hallie's voice might be like with a bit of augmentation.  But putting her under always gives us pause.  Not to mention that, as she gets older, Hallie becomes more aware of her medical issues and more concerned about going to the doctor.  She is convinced that Doctor Karen has already fixed her voice (apparently two visits to the Voice Clinic at CHOP were quite enough for Hallie).  So getting her in for a third treatment (this one far more uncomfortable than the first two, which involved having her make noises and get weighed) will not be fun.  Even less fun:  this particular trial substance lasts perhaps three months or so.  So if it does work (and we hope it does), we'll be back for more come the summer.  Prematurity:  the gift that keeps giving!

Pragmatics

Well, it took several phone calls and a six week wait, but we finally got a copy of the speech evaluation that Hallie had done at CHOP back in mid January.

We think the therapist who did the speech evaluation was quite wonderful (coincidentally she was the same person who did the eval for Hallie back when Hallie was 18 months old and said nothing, so overall she was very impressed with how far Hallie had come). We wish she had room on her schedule for Hallie to see her since we've heard very good things about her capacity to treat kids who are similar to Hallie. But the folks responsible for setting up the evaluation and getting us feedback from it could not have possibly been more disorganized than they were. First, it took about three and a half months to actually get an appointment for an evaluation at CHOP. I called the last day in September, CHOP called me back the first week of November, and set up the appointment for their very first opening, which was late January. The wait itself was maddening, but what was even more maddening was that the scheduler kept changing the appointment on us. She'd regularly call us to cancel the original appointment and say stuff like 'But we just had a cancellation for this morning? can you come over right now?' Of course it proved impossible to drop everything and run to Voorhees, NJ (we couldn't even get in to CHOP's main hospital in Philly for an evaluation---the wait there was interminable). Finally, after much back-and-forth (I think they changed the appointment on us four times) and about nine different phone conversations about insurance coverage, we did manage to find a new slot that actually worked and Sharon brought Hallie in to meet D. Sharon was given a verbal report of part of the evaluation and reported back to me that Hallie was ahead in terms of her expressive language but behind in other respects.

Of course, how behind is the big question, and this is something we could not answer until we got the formal evaluation. And when I opened the thick envelope with the write up last Saturday, I was a bit shocked.

Here's what the final verdict was:

First test: Clinical Evaluation of Language Fundamentals--Preschool (2nd ed) (CELF-P:2)

Average range subtest Scaled Score: 7-13 (mean 10)
Average range Composite Scaled Score: 85-115 (mean=100)
Mean Percentile Rank=50

Hallie's scores:

Subtest: Sentence structure: scaled score 6; percentile rank: 9. Age equivalent: under 3
Subtest: Word Structure: scaled score 6; percentile rank: 9. Age equivalent: under 3
Subtest: Expressive Vocabulary: scaled score 11; percentile rank 63. Age equivalent: 4.2

Core language score: scaled score: 86; percentile rank: 18

Second Test: Comprehensive Assessment of Spoken Language (CASL):

Subtest: Pragmatic judgment: standard score 80 (mean score of 100, average rank is 85-115). percentile rank: 9%. Age equivalent: 2.7

The summary assessment written up by the therapist concluded that "Hallie presented as an adorable girl with a complex medical history for prematurity and a recent diagnosis of High Functioning Autism/Asperger's Syndrome. Hallie's performance on standardized teesting revealed just below-average to average receptive and expressive language skills on standardized testing with difficulties in pragmatic language constructs. Strengths in expressive vocabulary skills were noted. Hallie displayed age-appropriate articulation abilities, representing significant progress. Hallie displayed reduced grammatical/morphological complexity. Comprehension decreased as the length and complexity of the oral message increased. Hallie demonstrated a below-average ability to make pragmatic judgments when provided with social scenarios. Hallie exhibited the pragmatic language functions of labeling, requesting, answering/responding. Hallie also displayed a strong awareness of polite terms during today's assessment. Hallie had difficulty greeting, commenting, and asking for informatio. Hallie demonstrates reduced awareness/use of non-verbal language constructs in social contexts. With respect to voice, vocal hoarseness, breathiness, and a soft vocal intensity were observed."

There's a lot more accompanying verbiage, but what it amounts to is this: Hallie knows a heck of a lot of words, and she more or less uses them appropriately. Her spoken vocabulary is above average, and is equivalent to that of a 4 year and 2 month old. But her comprehension (receptive language), sentence structure, and pragmatics (capacity to use language to communicate) are well below average and land her in the 9th percentile consistently, which means that 91% of kids her age communicate better and can follow along more easily with what is being said much easier than she can. The two go hand in hand from what I can tell: if you have no idea what is going on around you (you are not comprehending the conversations you hear, the instructions you are given, etc), you cannot really communicate with others very well, either because a good half of communication involves listening to others, interpreting what they are saying, and responding to them. So while Hallie absorbs a lot of words (nouns and verbs, in particular, and concrete ones more easily than abstract ones), and is generally using 3 to 6 word sentences with great frequency, she can't really/doesn't really interact with her environment. And given that interaction is less important for Hallie than it is for other kids who are much more engaged with the people in their environment, this seems to me to be a problem that compounds itself--rather than resolves itself--over time.

We are working on helping Hallie build the developmental scaffolding that she needs to interact with others in Floortime but progress is sometimes maddeningly slow. Hallie is still pretty reluctant to do imaginative, pretend play and especially has trouble 'acting out' other characters. She will often set up her doll house family or her Wonder Pets figures in various configurations but is resistant to the idea of having them play out a scenario, for example. And she needs to be able to do these things so that she can understand perspectives outside of her own.

So how are we going to handle all of this, other than panicking (which is of course a strength of mine!)? We just started Hallie in private speech therapy and so hopefully this will help a bit. We are also going to try to get her into a social skills/peer buddy class (preferably the inclusion one run at her preschool in the afternoons). This is one of those expenses that will be completely out of pocket and a bit hard to swing. The ideal would be a three-times-a-week group but we'll settle for once a week if that's all we can swing. We'd love to get a social skills group included in Hallie's upcoming IEP, but we don't have a huge amount of faith that Elwyn is going to give us what we think Hallie needs (even if there are a lot of evaluations that tell them that a social skills groups is appropriate for Hallie). At least, they won't give it to us without a fight is my bet.

The other thing that we are going to begin doing this week is an Integrated Listening program. We are pretty sure that Hallie has Central Auditory Processing Disorder and that this keeps her from making sense of what she hears. Hallie's hearing is fine, but she has trouble filtering out significant sounds from insignificant sounds. At least in part this is because her ears don't coordinate well enough with one another. Integrated listening is supposed to help with sensory integration generally. And we are lucky en0ugh to have a cousin-in-law who is an OT who has lent us her integrated listening materials so that we can give this program a try at home. Hallie loves wearing headphones and is particularly excited about the spiffy new Sennheisers that we've gotten her for this purpose. I'm pretty sure she's the first kid under 4 on the block with her own audiophile headphones.

So we're working on things. But I'd be lying if I said that all of this is not frustrating. Hallie is making a lot of progress. She is beginning to work on her emotions, which is fabulous because she is often more engaged with others than she used to be (even if that also means she's frustrated a lot more and occasionally given to manifesting her aggression by knocking down her little sister or exploring the implications of ramming her play shopping cart into the other kids at school). But we also know how much of a struggle things are for her and how quickly things tend to fall apart , particularly on days when she does not get quite enough sleep, enough food, is having a reaction to something she's eaten, etc.

But we'll keep on keeping on because that's what we do best around here, and we'll try to remember that, even though Hallie is far behind in some respects, she's advanced in others and that, hopefully, the work that we are doing will help her close this gap.

"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.

Meeting Ralph

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.'

Developmental Concerns

Concerns are never far at bay in our world. We'll have some nice stretches of time (usually days, rarely weeks) when things seem to be going well around here and then other, more frequent and longer stretches when things seem to be falling apart or, more aptly, when the puzzle pieces do not quite fit into place and we are not sure what to do for Hallie.

We're kind of in the latter situation right now. For the past bunch of months (since around the latter part May, I think), the eating situation has gotten entirely out of control. Hallie went from more or less eating 20 to 25 foods (with lots of prompting, distraction, and reinforcement via rewards, but still...) to eating fewer and fewer as the days and weeks dragged on. We're now down to about four (on a good day) foods: potato chips (which she has even refused on occasion); chocolate cake (maybe, but it's worth a try); pretzels (ditto); and french fries. The last two are not consumed -- rather, she will bite the ends off of them and discard the vast middle, regardless of how crunchy that is. She might take a nibble or two of pizza if we're lucky but gone are the days when she ate a reasonable amount of this. And under no circumstances does she eat anything resembling a meal. "Meals" are at most 50 calories. And that's on a very, very good day. Foods she used to eat in pretty large quantities such as goat cheese (half an ounce to an ounce at a time); bacon (one to four slices at a time); hot dogs (anywhere between a third to a whole chicken hot dog); french fries (whole fries, and ten to twenty at a time); toast (anywhere between a quarter and a whole slice); toasted bagels and English muffins; the aforementioned pizza; chunks of watermelon, pears, and apples or little handfuls of raisins; and probably some stuff I'm forgetting about now are all mostly off limits. Ninety percent of the time, just presenting these foods to Hallie will yield repetitively screamed "NO"s, hand wringing, quiet meltdowns, and other manifestations of disgust. Under no circumstances will she try the vast majority of these, and while she might nibble at her now exclusively preferred texture (crunchy), she doesn't "eat" them in any conventional sense of that word. We've been to feeding evaluations and therapies, we have done copious amounts of reading, we've tried numerous tactics (immediate and deferred rewards, eating at the table as a family and engaging her in conversation, using other peers to model eating for her, not eating at the table, chasing her around with food...you get the picture). She is having nothing of it. This is worrisome from a dietary standpoint since her intake is now limited to water (she'd drink this all day), fruit purees that we feed her (maybe 250 calories a day on a good day), and her beloved bottle (all hopes of getting rid of this now dashed, and before you write a comment saying that this is at the root of her eating difficulties please beware that on the best days she only drinks 12 to 16 ounces of her high calorie (27kcal) formula for a total of 300 to 400 calories---she's not exactly filling up on this, folks, since she needs a minimum of 900 calories a day to just hold her own).

We're not really sure what's going on here. Part of this is the "terrible twos" which our globally delayed kid has come to late (as she has come to everything else...except her birth, which she came to way too early, ironically enough). A friend of ours brought her just two-year old son over for dinner right before they relocated to California (and thus decreased our number of real-lfe friends by about 15%) and it was eye-opening to watch S. at the table refusing everything with which his mom presented him. So part of it could be a "phase." This phase, in typically developing children, is often linked to their realization that they are more independent and have more control over what they do in life. It's often a good thing, even if a hard thing, on the road to a child individuating him or herself. But your typical kid also drinks enough milk to compensate for refusing solids and, more importantly, often likes food--or at least something in the world of comestibles--enough to break down and come around to eating again. Hallie, in contrast, hates food and sees it as a source of pain (remember the GI pain, vomiting, etc that plagued her for so long) and does not 'feel hungry' in any conventional way. So she is content to not eat at all.

Parental intuition suggests to us that something more significant is going on than an extreme version of terrible two food rejection, yet neither Sharon nor I can wrap our heads around it fully. We don't think that the primary cause is physiological/medical, either. Certainly, Hallie's food aversions this past week or so may be attributable in part to signs of increased reflux (possibily due to her cold, which always increases her phlegm and probably naturally decreases her appetite, t00). She has managed to eke out a few more vomit free days (up to 184 at this point), but the vomiting has picked up some and so has the silent reflux. But the trend of not eating predates the increased symptoms of reflux and this seems secondary to the problem and not at the root of the eating issue.

Hallie is a kid who is very "spectrumy" (for want of a better word...it sucks to be stuck in limbo knowing that your child has neither been placed definitively on the autism spectrum nor fully cleared from it). While all children need routine and even crave it, for her routines seem even more significant. She sets up her own rituals. For example, she has to take out certain toys when certain people come to play, must use swings in the playground before anything else, and has 'exit rituals' where she must touch certain objects on the way out of places. We are not sure why she needs these things, but she needs them--it's not just a matter of habit or preference, but some sort of connection in her brain that she is making and that she cannot explain to us. If you disrupt these rituals and routines, things don't go smoothly. Hallie does not have huge tantrums or meltdowns for the most part--this is one area where she does not resemble most children with ASD--but disturbing the ritual makes life more complicated. Here's one case in point: for the longest time, we could not figure out why Hallie felt that it was okay for Sharon to leave the house for work in the morning but that, on the rare occasion that she sees me leave for work or the store or whatever, she would burst into inconsolable tears. We finally realized that it was because no ritual existed for this. When I am at work, I leave home before she is awake and that there is no established pattern on which she can hang her head when I leave during the day for a trip to the store or to do some reading at a cafe. Were I to establish such a ritual, it would be fine. For example, on Friday nights when we head down to the shore for hippotherapy, we stop at a convenience store to purchase a bag of ice for the cooler. At first this used to elicit severe crying jags from Hallie that often would lead to vomiting. Distracting Hallie with a game of Dress Chica on the iPhone or singing songs didn't really seem to help. What did help was constructing a 'social story' for her that helps her anticipate what is going to happen and that she can turn into a ritual. We have now taught her to realize that 1. mama is going to the store to buy a bag of 'circle icey' (her name for ice cubes that have circular holes for your finger in the middle) and that 2. mama will be right back. She repeats this story to us and is okay when I get out and perform the task.

We have come around to thinking that something that we did to shake up Hallie's routine--and you can take your pick here about what that might have been--is what made things worse in terms of feeding Hallie (not that they were ever good, mind you). Back in May, in anticipation of preschool, we tried to get her off of the bottle. We also tried to get rid of the television (and pretty much have) at mealtimes since it was not only something she was going to have to live without when eating at school but because we felt that it was too distracting to her (it led to some pocketing of food) and inhibited communication and interaction, which is something else that we were working on. Either of these things, or some other shift in routine too subtle for us to have a handle on right now, might have triggered her to ramp up food refusal to an extreme.

This is what first got us thinking about routines and how they might play a role in all of this: both Sharon and I were at the most recent feeding therapy session with Hallie at Jefferson this past week and, while I had prepared the usual meal to feed Hallie (toast, cheese, spaghetti, chips, applesauce, and yogurt), we were so distraught about how bad things have gotten in terms of her eating that we never bothered to unpack the food. We just started to hash things out and brainstorm with the therapist. Hallie sat at the table playing and the three of us just talked. Part way through the session (maybe fifteeen minutes into), Hallie grabbed her pink lunch bag and began to rifle through it, brought the food containers to the table, unwrapped the toast (with help from the therapist), ate a small square of it (more than she had in days), ripped up the rest (she is a championship level ripper and player with food), and then asked for her reward. Why did she do this? Because that's the routine that has been established for this room. That is the structure of how things unfold and she cannot help but have them unfold this way. Anything short of this disturbs her more than eating disturbs her.

Since we cannot just take over that office in the Jefferson rehab building three times a day, we are beginning to think that our new task is to figure out how to come up with some new routine for her for eating that might work. I think this gets us a bit away from child-directed Floortime principles and back to ABA (applied behavioral analysis) but I think we can live with this approach as long as it does not involve force-feeding our kid. We are aware that we need to construct some sort of 'social story' for Hallie around meals. The only problem is that things around meals are now so bad that we really don't know where to start.

We also are concerned that feeding Hallie's demand for routine (pun intended) may be detrimental and not helpful in the long run. We need some guidance here from the specialists (thankfully, Sharon and I meet with our Floortime guy for a parents' session on Monday night and we have a follow-up with the developmental ped a week from now). Does encouraging repetitive or scripted behavior help or hurt a child who is spectrumy? Will Hallie learn to generalize things (like eating, or playing, or communicating) this way or just be stuck with a 'script' (which is often the charge lodged against ABA as a therapeutic approach)? How do we get her to do what she needs to do and yet also learn to adapt, be flexible, creative, and think outside the box? And this, of course, provokes more, longer-term concerns: will our smart, enthusiastic, and adorable little girl ever be able to adapt to changing environments, new people and routines, and forge her own way or will we always need to manage things for her? I don't think that I can go there right now (as tempted as I always am to try to grab hold of and analyze the bigger picture) since the long-term future is too hard for me to imagine.

Anyway, I do think that the past few weeks have been particularly hard ones for Hallie. For various reasons, she missed two hippotherapy sessions in a row and her poor posture at therapy yesterday proved how essential this therapy is for. Her eye contact seems a bit off, as well, and we're not sure to what to attribute this--it's too soon to be feeling the effects of no more private OT (I think), but perhaps this is an indication that we're not doing quite enough Floortime or sensory integration activities with Hallie. It could also be rooted in her lack of food and the cold she seems to be nursing. Who knows. Hallie is also still readjusting to being back at school. She no longer has problems when I leave her, but she seems upset when I pick her up (like she is not sure that I am coming or something. I am not sure what this is about--maybe her peers' departure prior to her own provokes anxiety in her. She cannot tell us this and so we simply don't know). She was out of school for break just when things really began to go smoothly and she began to fit in there. Then she lost her excellent school aide and, while the new one is nice enough, she doesn't seem to be particularly good at trying to get Hallie to mix it up with the other kids. Hallie is showing signs of opening up to the others on her own -- she greets them by name each morning, will happily sit down at the table or in the circle immediately and is not showing signs of separation anxiety from me on most days (again, it's become a ritual to do this, so it's now fine).

She does seem to be making some effort to play with kids, but the new aide isn't as good about writing notes as the old aide was, and her analytical powers are less well-developed than those of PCA #2, so it's not entirely clear to me what this play entails. She is certainly not doing the elaborately-developed pretend play I've witnessed when observing some of Hallie's peers. I know she doesn't have the skills for this yet. Her pretend play mostly involves acting like other people or creatures (we will pretend to be bears who do bear walks and growl; she will pretend to be her cousin Taylor who is just learning to walk and ask me to walk her around the house in the same way that Aunt Kim walks Taylor around the house; and she will sometimes pretend to be Lea and mimic her babbling and crawling). That's fine--it's something to build on. But I am more concerned that Hallie is merely doing a lot of parallel playing at school, and, once again, those questions about whether she is merely delayed or whether this is a sign of some underlying disorder keep cropping up in my head.

I think I will have an opportunity to help with some of this. On Friday, when I was picking up Hallie from school, one of the other moms at school invited us to go to the playground across the street from the preschool. Apparently, a whole bunch of moms bring their kids here at three o'clock so they can play out their sillies. The mom who approached me told me that her husband had noticed how enthusiastic Hallie was about greeting their son when he arrived at school. She wondered whether Hallie was in his class (she is not; he's one of the older kids but Hallie is so tall that she is frequently mistaken to be four, which sort of sucks since it makes her seem even more delayed). But Hallie had recently added M. (her son) to the list of friends whom she rattles off to us each night (we were thrilled about this addition because it means that Hallie has varied her routine). And so, for lots of reasons, I was very happy to join the others on the playground.

Even though Lea was awake the entire time, she was (and is) such a good baby and she was content to hang out in the stroller, feed herself a bottle, and flirt with the moms (aside: I am grateful that Lea is so easy-going but feel guilty that parenting Hallie often means that Lea is parenting herself. She is getting very good at holding and tipping up her own bottle, which is a skill that Hallie didn't develop until some time after age 1.5 or so).

Hallie mostly did her own thing and did not mix it up with the other kids. I tried to get her to hang out with the others, or at least buzz around in their vicinity, but she sort of had her own agenda, which involved swinging and spinning on the swings for a more than average amount of time and borrowing a stroller with a teddy bear from another little girl (I had her ask the girl, and then offer the girl turns with her own stroller, which she did somewhat grudgingly and with a few tears).

At some points, the others were over at the swings, too, and she copied what her classmates were doing. And at one stage, when they were all over by the slides, she softly whispered in a voice that was only audible to me, "c'mon guys let's swing." But she is shy and her paralyzed vocal cord doesn't lend itself well to screaming across a big playground. Still, it was a good sign. She knows that they are there and she wants to figure out how to play with them (and she wants to call the shots on how they play, which is something she does with some of her other friend's, like Eliza Grace, Alex, her cousins, or Karina when she pops in unexpectedly). Without being too helicopter-ish, I will try to teach her how to approach her peers. I may say something to the sympathetic mom who invited us to join them so she knows why I am doing this and not just chatting about Philly politics and school stuff, our cute kids, and how much the world is going to a hand basket with the other moms who hang back in a clump while their kids play independently and work it out for themselves. This is complicated: I know that I shouldn't have to explain why I am participating differently in my kid's playtime than they are, but I somehow feel compelled to do so. As much as I don't want Hallie to be seen as different from the others, I nonetheless do feel like explaining why I am managing things a bit for her is not rooted in my desire to coddle her so much as my desire to help her skills progress in a way that will, hopefully, allow her to manage things for herself down the road.

Anyway, if you have managed to make it through this tedious and rambling post, I commend you. This was mostly written to help me sort out the things about which we have been thinking and the issues we've recently been facing. If you have any insight or ideas, we'd love to hear them. And, rest assured, not all is falling apart completely around here: both kids are smart and adorable and we really are enjoying them. On the Hallie smarts: we had CNN on the other day (a rare thing, since our TV is mostly tuned to Noggin and Sprout) and Obama came on to advocate health care reform. Hallie turned to the TV and pointed and said: "Obama!" I think I told her his name twice leading up to the election and once or twice since then. She's got a great memory and excellent capacity to attach names and faces, which is decidedly not an autistic trait. On the Lea smarts: the kid is figuring out how to push herself up into a standing position and wants desperately to do this while not holding onto anything. While this presents her with some personal danger (she's gone boink a few times), she's very much figuring out how to negotiate her own universe and demonstrating a lot of independence. At the same time, she is a most engaged baby who follow us around using her power army crawl and when she realizes that she's caught up with us/found us, flashes us this huge and very winning smile.

And Lea just got her first tooth. Can't see it yet, but we can definitely feel it. I am not sure that this makes her smarter but it will help her munch down on her preferred foods (pretzels, graham crackers, bagels, and cheerios--she's skipping baby food, we think) much more easily. And this kid loves to eat, which makes us very relieved.

To reward the fact that you've stuck with this, here's a couple of shots of Hallie taken by Sharon at the playground last weekend:



And one of Hallie 'reading' to Lea in bed last week:


OK, I'll end here. It's eight am and I've been up since five and desperately need a cup of coffee...

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.

Birthday Countdown

Unbelievably, Hallie will be turning three in two days. I am not sure where the time went (and I am quite frightened that we are now a mere 13 years away from her getting a drivers' permit...if her navigating and safety skills with her toy vehicles are any indication, watch out drivers!)

Anyway, we spent part of Saturday procuring Hallie-friendly food for her birthday bash. If you recall, last year the only thing she could eat that we had at her party was Lesser Evil Potato Sticks in Sea Salt flavor. This year, our shin-dig will feature Oreo cookies, Lays potato chips, watermelon, and pizza (we'll get regular pizzas for the masses and have commissioned a pizza with goat mozzarella from Whole Foods for Hallie so that she can enjoy as much of it as she would like). And our lovely friend, Sara, whose hands are already full (she is a NICU nurse and mom to three-year old Charlie and three-month old Aaron; she makes and sells lovely burp cloths (Keiki cloths) previously mentioned by us on our blog; and is a wonderful photographer who took some gorgeous shots of Lea as a newborn) has volunteered to make Hallie a birthday cake. We're still using allergy-friendly stuff (meaning no egg or cow dairy in it) because we're still not sure how well Hallie responds to those things, but we do know that, at least conceptually, Hallie loves cake. I bet that Sara's beautiful giraffe cake will go over very well with our girl.

Hallie is definitely getting into the birthday spirit. We've been asking her how old she is for a while now and she has consistently responded "two." Lately, we've also been inquiring how old she is going to be and she gleefully retorts: "three!"

Hallie has also finally learned how to blow (sort of...she has blown conventionally by rounding her mouth several times but cannot do this on command. Instead, she bites down on her lower lip and spits out some air. Amazingly, this does the trick and she can extinguish flames of candles that way). We've been practicing the Happy Birthday song and blowing out candles with her all week and she's been doing super at it.

Anyway, we think she's excited about her big day and we're fairly certain that she understands what it entails this time around.

On other Hallie news, she's also doing a whole lot of new fun stuff (some of which makes us really happy and others of which exasperate us no end). In terms of the former, she's been doing a lot of pretend play. On Saturday, while we were in Superfresh buying supplies for Hallie's party, Hallie kept asking for chips (she says, "a big round one!"). We happily indulged her requests and she munched her way up and down the aisles as we tossed stuff into the cart (this was a major improvement over our experience in Toys-R-Us, when she tossed all sorts of random stuff we didn't need and didn't wish to buy her in the cart for us). One of the chips Sharon gave her was more heart-shaped than round, which Hallie pointed out to us immediately and then burst into a chorus of "Love" (by Rachel Coleman, and easily among Hallie's favorite songs). Once the singing was over, she began to feed the chip to her Count plush doll (of Sesame Street fame), who kept saying "yummy, yummy, yummy" as the potato chip crumbled in his mouth. Then, rejuvenated by the snack, Count began to fly (he does, after all, have a cape) and Hallie narrated "Count is flying!" as she made him do so.

Today, she showed off her prowess with verbs while she used her mallet (from her doctors' kit) to bang some imaginary nails into her Melissa and Doug dollhouse. She turned to me and said with pride, "I build a house!"

And, finally, my favorite Hallie-ism of the day: she's been walking around all day saying "I spy with my little eyes..." and then filling in the blank with whatever she sees at the moment. This evening, she looked through the hole of her smiley-shaped potato patty and said "I spy with my little eyes Mama!" There's no question: I was very happy to be spied by her little eyes.

So, yeah, on the eve of three, Hallie is pretend playing and speaking a whole lot more. That's the best birthday present we could imagine receiving from our no-longer-so-little-girl.

Sorry about the lack of pictures, though. I promise to try to take some later in the week. But one last update: we're up to 107 days without vomit. Hallie does seem bored with some of her foods but disinterested (or even hostile about) trying new ones, not to mention drinking her milk (she does, however, like to eat the silicon straws that come with her insulated Thermos bottle, much to our chagrin). But she's been eating well enough and drinking okay enough (marginally) and keeping everything in with no real problem. So we are thankful for that, too.

Growing, Growing, Growing

 

When we last left the heroines of this story, Lea was a tiny little infant who was still in a blob-like phase. Fast forward through the two long weeks of my virtual absence from the blogosphere. She is now a HUGE baby (my best guess is somewhere in the area of 13 lbs., which is shocking to me since that's what Hallie weighed when she was around 6 months corrected and Lea isn't even 4 months old yet) who is beginning to bat at toys and has rolled over from tummy to back a few times. These have all been rolls while-on-somewhat-uneven-surfaces so we're not counting them, but it's pretty clear that our little one is going to begin moving in earnest sometime soon. When she's on her belly, she tends to move her legs in a swimming pattern (I am sure there is a more technically correct way of putting this, but that's all I could come up with on my own) that suggests a desire to scoot. And when she's on her back she rocks around a lot, which means that rolling over onto her belly cannot be long off, either.

 

Lea's a particular little baby. Just a couple of weeks ago, her single mode of eating involved snacking (a half ounce of breast milk there, a half ounce of breast milk here) but now she's taking anywhere between two and three ounces of milk at one time. This is a definite step in the right direction, but you better not run out of milk mid-bottle---it gets her SO mad. And when she's mad, she lets you know it! Also, if you are me, don't ever try to feed her while sitting down. She only likes bottles from me while I'm pacing across the floor, holding her in the crook of my arm. And, never, never try to put her down in the swing these days while she's awake...the swing is only for sleeping. She vastly prefers hanging out on the living room floor or in the changing table part of the pack and play where she can watch what's going on around her (and catch some of her big sister's television shows. We are horrified that Lea already seems so interested in Barney, Sesame Street, and Caillou and we can add 'less television exposure for Lea' to the list of the million reasons we want Hallie in preschool soon).

But the funniest thing that Lea likes to do is to love on her burp cloth. We began to notice this a few days ago. Often, we'll use the burp cloth to prop up the binky while she's in the swing, or we'll end up dropping it on the floor or in the pack and play next to her whenever we put Lea down. After walking away to do something else, we'll invariably come back to find that the burp cloth is over Lea's face. Whoever finds it this way will move it out of the way, only to find it back over her face two minutes later. And if it's next to her, rather than on her in some fashion, Lea will reach out her hands and grab it and throw it over her own face. We've tried to encourage her to use her organic plush bunny lovey instead, but Lea seems to prefer the burp cloths to any other security blanket. Maybe it's because it smells like milk (both fresh and burped?) Who knows. Right now it's very funny (but hopefully we will not have to explain to future college roomates and such why it is that she must carry one at all times!) Lea especially loves the burp cloths made by our excellent friend Sara, who is a nurse in the ICN at Pennsylvania Hospital. On top of being mom to Charlie and Aaron and a nurse, Sara is also hugely creative. She also took some very wonderful black and white pictures of Lea back in mid April that she framed into a collage for us and dropped by yesterday. In a shameless plug for her microbusiness, consider visiting the website where she displays the patterns of her keikicloths; they really do make a lovely baby gift!

Anyway, I digress. The other thing notable about Lea these days is that, if she is entirely asleep on her side (her preferred mode of sleeping since it allows her to sleepily locate Sharon's nipple all night long), she will stay asleep even if others in the bed get up. This worked out very nicely for me on Tuesday morning because it meant that Lea could get the rest that she needed and Hallie and I could have some quality time together.

 

 

So, even though Lea still likes to sleep on people, there's hope that we can someday put her down in her own bed. I'm sure that this will disappoint Grammy, though, who loves to hold her for hours and hours. She got a chance to do so last weekend when Sharon took the girls down to visit (while I was visiting my own mom, who broke her hip and femur a couple of weeks ago, but is doing quite well right now, all things considered):

 

 

Hannah, who just turned six, is hamming it up for the camera in the foreground. It's hard to think of Hannah as one of Hallie and Lea's little cousins anymore. She looks so grown up! Here's a picture of Hallie and Hannah; I wish the light on this were better (Sharon might be able to photoshop it to improve it somehow) because it's otherwise such a great shot:

 

You may have noticed how much neater Hallie's hair looks in these shots.  Sharon took her in to our salon to have Whitney, who, in addition to being a versatile hairstylist also used to work as a childcare provider and nanny, give it a trim.  Whitney did a spectacular job and Hallie really enjoyed the experience.  We were a bit concerned about how she might react to the snipping in the absence of Elmo and company on a DVD player, but Hallie was great.  She enjoyed making faces at herself in the mirror, sat still for the entire experience, and was not at all put off by the comb and scissors.  In our estimation, the results of this haircut are spectacular and Hallie looks like a pretty little French girl.  As it turns out, her hair is not entirely straight but contains some very fetching little curls and waves.  Here's a closeup of Hallie's face during the school bus ride--which she thoroughly enjoyed since she associated it with one of her favorite songs, which she insisted on singing the entire time--to her cousin Sarah's crew meet last weekend:

 

Now if we could only get our Sensory Kid to stop smearing stuff in her hair, we'd be in a really great place where coiffing is concerned!

But the smearing has an upside, I suppose:  Hallie has been trying lots of new foods lately and a lot of them end up in her mouth and not just her hair.  She is very fond of watermelon, appears to have a passion for Rita's mango water ice, has been very into eating raisins, and has tried cantaloupe (jury is still out on whether she likes it, but she's definitely interested in gnawing on it).  She's been willing to put chunks of raw zucchini in her mouth.  And, drum roll please, she ate a third of a piece of regular (cow milk cheese) pizza last Monday after gym class without any prompting or bribery.  She just picked it up and ate it.  She did insist on eating it upside down (cheese and sauce on the bottom, crusty bread on the top) and this made things a bit messier than average, but we're not going to be sticklers for detail.  What we did notice, almost immediately (and it was Nadia who pointed this out to me, so it's not even my paranoia peeking through) is that Hallie began to sound very snarfly and stuffy and she clearly had some reflux after eating the pizza but the important thing is that she kept it down.  This suggests to me that she is still sensitive to cow's milk and that we need to proceed with caution, but that a little bit isn't going to set off the major episodes of vomiting and reflux that we used to see around here.  I'm beginning to wonder, too, whether something like Lactaid wouldn't help her.  Perhaps it's an issue of a missing digestive enzyme (which seems to be the case for beef with Hallie).  I know that Lactaid makes milk, cheese, and also pills that adults can take, but I am not sure whether they, or anyone else, makes lactase in a form appropriate for a small child who cannot swallow pills.  If anyone has any leads, please let me know.

So the eating is going pretty well around here.  Hallie is trying new stuff all the time and is eating a wider variety of food (she had a few bites of bialy the other day and really liked it; is willing to tolerate chunks of chicken nuggets dipped in catsup, of which she is quite fond; and adores creamy goat cheese spread on toast--which has to be brown and which she'd prefer to use only as a vehicle for transporting goat cheese to her mouth but not necessarily as a food worth ingesting in its own right; likewise, she loves the tomato sauce on pasta but is fairly indifferent to the noodles in their own right).  Just as importantly, she has not been vomiting.  At all.  I am sure that I will be jinxing myself at this stage, but it's been fourteen straight days now and she has not upchucked.  I do believe this is our record.  And we stand at 89 days of no vomiting this year, so things are looking really good.

Because of this, we decided to pull the Reglan altogether from her list of medicines.  Reglan has some scary immediate and cumulative neurological side effects and, while we believe it was a very important drug that helped her at some critical points, what we're seeing now indicates that she's no longer in need of it.  She does not appear to have delayed gastric emptying at this point and, to the extent that she does, prunes and water (she loves water, which of course makes sense since it has no calories) are doing the trick.  On top of this, we've cut her dose of Axid down to once a day.  We're keeping the prilosec for now, but down the road may consider weaning her off of this too.

Hallie still has good and bad eating days, but we do notice that, over time, she does fine.  Some days she might drink as little as six ounces of her super-charged goat milk and other days as much as 18 ounces.  She stays hydrated, though, because she drinks a fair bit of water and juice (not to mentioned swigs of diet coke that she steals from me and once or twice a gulp of coffee--not that these are particularly hydrating and heaven knows that the last thing she needs is caffeine).  

Our biggest concern now is getting her to eat like other kids.  We don't mean that she needs a broader variety of food--honestly, the fact that she eats about 20 things and is willing to try stuff at her own rate is fine by us.  What we mean is that we would like to get rid of the high chair, the TV/DVD player, and the prompting/reward system while still managing to get enough calories into our kid to keep her growing.  We are not sure how to proceed with this, so if anyone has any clues, PLEASE let us know.  Every time we try to feed her at the table with us and have a family meal (even if there are other kids here to keep her company), it never goes particularly well.  She might take a bite or two but that's it, and usually a meltdown ensues.

We are hoping that preschool helps teach her a thing or two about how kids eat (and enhances her general social skills), but how that all plays out remains to be seen.  The IEP is next week and that, and Hallie's assessment, warrant a separate post (yeah, I know I say that a lot, but this time I really mean it).  Meanwhile, I leave you with some cute shots of Hallie taken at Sesame Place three or so weeks back:

 

Just Chillin' in her Stroller

 

Sliding was lots of fun but Hallie had the best time cavorting on the gym mats (and pulling her mama into the fray)

 

 

 

And here she is hugging Zoe:

 

As it turns out, she's in a Zoe phase (I am guessing that many little girls go through one). She especially likes imitating Zoe performing ballet. She'll place both hands over her head, pirouette-style, and lift one leg. This is cool, because I had no idea that she was able to stand on one leg even for a brief few seconds (this is one of the things that you are supposed to do by age 3; there are many many things that you are supposed to do by age 3 that Hallie cannot do, so it's nice to see that she can do one). So, between dancing like Zoe, galloping around the house with a cowboy hat on, saying "I ride horsie! NAY!" and marching like Barney the purple dinosaur (one of Hallie's longest sentences is "Barney purple dinosaur is MARCHING!"), I do think we have a bunch of emerging pretend play skills (one of those milestones-not-quite-met), which makes us very happy. So if she needs to be Zoe and Barney, that's fine by us! Now if we could only break her of some of her TV watching, we'd be even happier!