Thoughts about the Spectrum: Autism Awareness Month

I suppose that our testing season for Hallie could not have come at a better time in terms of heightening our awareness of the Autism Spectrum Disorders (ASD). A couple of weeks ago (as noted in a few posts back), we began the process of evaluation. This was supposed to have continued last week at our scheduled evaluation at the Center for Autism (the oldest such center in the US) but we discovered, only after schlepping the whole family out there, that they forgot to put us on the calendar of the evaluation team of doctors and learning specialists (this in spite of a confirmation letter that I had in hand, as well as a couple of confirmation phone calls). I hate when this sort of thing happens (honestly, it's only happened once before and then we were not so much left off the calendar as subject to double booking that meant a one hour appointment actually lasted four). But a tantrum would not have helped (unless, of course, we were seeking to diagnose me!). More importantly, we have the rest of the CHOP evaluation coming up on Tuesday, when we will subject Hallie to the ADOS (the Autism Diagnostic Schedule-Generic), where she'll be assessed by a therapist who will watch her play with a bunch of toys in a clinical setting. The testing is happening in a clinical environment, at nine am, with a bunch of strange, new toys. Unless Hallie really surprises the heck out of me, she will have massive separation anxiety from me that will involve tears, a tantrum, and potentially vomiting, followed up, in a best case scenario, with furious play with toys that involves throwing everything in the middle of the room, perhaps rolling around in it for sensory pleasure, and examining each and every item to see how it works before discarding it onto the debris field. If you invite Hallie into your home, you will witness a lot of this curious- toddler-gone-wild behavior (and hopefully not the vomiting!). In case you cannot tell yet, I am quite concerned about the outcome of this session.

Meanwhile, regardless of diagnosis, we have begun Floortime-DIR therapy (we've had two sessions already and a third scheduled for this week) where we are learning how to engage with Hallie on her own terms (get on the floor with her, as it were) to elicit conversational cycles (non-verbal and verbal) and help her advance her communication skills. And we've started the process of getting her additional, private Occupational Therapy at CHOP for her raging sensory issues.

So, yeah, we're thinking about ASD, its relationship to prematurity, and how all of this manifests itself in our kid. I haven't put all the pieces together yet (quite apropos since autism is often depicted as a puzzle the pieces of which--which are always arrayed a bit differently in each individual--don't quite fit together neatly). But I'm going to try to tease out my thoughts about these things in this post, at least in a preliminary sort of way.
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One week later:

Well, it's taken me long enough to get back to this post! This two-mom, two-kid (one of whom is special needs and over-scheduled), one part time nanny thing is really incompatible with things like grocery shopping and laundry and tax filing and hence even worse for blogging. Sigh. Anyway, I'm sitting here gobbling down some matzo ball soup (Happy Passover and thank you so much Sheila, Brett, and Rosa for facilitating my dinner tonight!) and still thinking about the ASD. Hallie had her ADOS (a standardized diagnostic test that will help determine if she is on the spectrum) on Tuesday morning. Hallie could not have been more cooperative and personable: she clearly remembered that she had had fun playing at the office and was well disposed to playing with the toys they offered once more. And, since the assessment was scheduled for 9:00am, she was at her freshest (and hungriest, since we did not have time to feed her before the appointment. This came in handy for the snack which was part of the assessment). Hallie is not one prone to tantrums but when she's stressed out she checks out, zones out, and shuts down. So that she was not feeling any stress (even ours) was a good thing. And we could remain in the room for the testing. This staved off her separation anxiety which was a good thing. Anyway, other than the birthday party module (where she was to stage a mock party for a baby doll that involved fashioning some light yellow playdough into a cake, placing some wooden pegs into it to serve as candles--the test stresses the importance of using placeholders and not the real thing as an accurate assessment of a child's imagination, and then blowing out said candles after singing the Happy Birthday song and serving cake to the doll), Hallie did fine....WE THOUGHT. Hallie had zero interest in the birthday party and preferred to just squish the playdough, but we did not think she missed anything else. WRONG. We're the kind of moms who scour the internet for scoring sheets (not too hard to find, though easier on my Mac google search engine than on Sharon's Dell. Who really knows why.). It turns out that Hallie lost points for this, that and the third thing all along the way. Since the cutoff for PDD-NOS/Aspergers is 7 points (0 is the best, anything above 15 is classical autism), we're fairly certain that we're cruising for a diagnosis come our follow up with the Developmental Ped on Monday.

We're not really sure what we think about this. On the one hand, it really changes nothing since we are interested in getting Hallie the services she needs to even herself out anyway. On the other hand, it's hard to hear the label 'disordered' applied to your child.

And then there's the matter of the application of a standardized assessment to anything but a non-standard kiddo. The whole birthday party scenario was aimed at testing whether a child has a 'Theory of Mind' (i.e., imagination). But what does one do if one's child has never really been to a birthday party? Or what if she does not like dolls? Hallie clearly does have an imagination (pieces of bacon look like ducks, dogs, and dresses; she uses pieces of cheese and hot dog to construct faces on her high chair tray). But she does not have a cookie-cutter imagination. And why should she lose points for reaching for the balloon but not pointing to it using her index finger (she does point, just not then)? Or because she was more interested in how the mechanical bunny functioned (she figured it out and could work the mechanical foot pedal on her own) and not in pointing to it? In any event, these are important, and troubling, questions but I am not sure that they are particularly worth asking in this case. Why? Because both of us know that, as smart as Hallie is, she DOES have some significant atypicalities and both Sharon and I are more interested in helping her even these out than in denying them and this alone warranted bringing her in for the assessment as soon as humanly possible after our ped raised questions about ASD and helping her in whatever way we can. Yes, it's complicated and yes, it's getting hard to juggle Hallie's schedule with parenting both her and Lea and doing the other stuff that the rest of our life entails (thank heavens for the fact that my leave coincided with all of this). But the alternative (dropping the ball, denial) are not an option, so on we forge.

That said, expect a picture-laden but hopefully as word free as possible (for me!) next time around!

(Meanwhile: 58 vomit free days and our kid tried and loved a flourless chocolate cake last night that contains both eggs and butter just fine last night. Yippee!)

On Eating and Its Consequences

That does sound a bit like an 18th-century tome, doesn't it, except that the 18th-century tract's title would have been followed by a colon and the following:

"a discourse concerning the first-hand exploration of the evidence of digestion, or lack thereof, and the malfortunate outcomes for the teeth of a young girl, witnessed at first hand by an explorer through the world of Hallie, recently yet tentatively among those who chews her food and will perhaps thereby avoid the moral and other consequences of sleeping with her bottle."

Yeah, that about sums it up. Gotta love those early modern titles: while long-winded they capture the essence of the thing and let the reader know precisely what's in those moldy binders before he or she mistakenly grabs the book off the shelf thinking, perhaps, that it's some excellent mystery.

Except for, of course, it is: no one really knows where this consequences-of-prematurity thing ends.

OK--where to start, now that you know the subject?

Well, I guess I'll begin with the family meeting/conference call that happened at the ped's office on Wednesday. It really wasn't quite the whole team. It was me, Sharon, and Ami (Hallie's intrepid nanny who is as invested in this as we are), our ped (who is great---and I'm not just saying this because he knows we blog), and our GI fellow, who called into the ped's office. Not able to make it was Allergy (which was too bad) and we didn't invite pulmo (though we may be seeing some exercise-induced asthma issues with Hal, but I'll raise that at our appointment in two weeks) and eyes and ENT were not really relevant. I would have liked Allergy's opinion about a repeat scope, but we'll have to get that later on. Right now, our chief goal is to rule out some other stuff so that we can figure out to what Hallie is really allergic and what just makes her tummy uncomfortable for other reasons.

The good news from that meeting is that we can take serious weight loss off the table. Hallie weighed in at 29 lbs (1320 grams), which is only a half ounce gain since early-mid September, but, given that she's been sick and, given that this still puts her at above 50% on the weight curve for her actual age, we're less concerned that we were a week ago about this. She has also gotten a bunch taller---we did not measure her length (she gets that done at GI next week), but we know from the way her pants are fitting (as in, she doesn't drag three inches on the floor) that she's getting pretty tall. This makes her seem skinnier.

So, with major nutritional concerns off the table for now, we can talk about the really serious stuff. In my mind, the biggest question is why her motility is so delayed and what we can do about this. It is typical for a person to void about 90% of their stomach's content in an hour, and we know from the last motility scan that Hallie had about an 80% residual at an hour (for informational purposes, this is formally called a milk scan---where they strap you down on a table after you drink some barium-laced formula and then they chart how quickly your tummy empties; the scan also picks up big reflux events, but the gold standard for reflux is a pH probe, which we've never had done and do not ever want to have done). We know from empirical evidence (undigested food coming up three or even four hours later) that Hallie's motility is still impaired. Sadly, a bag or two of time stamped vomit will not suffice for the GI as 'evidence', so we will have to try to do another scan to confirm this. This shall not be any fun, given that Hallie doesn't easily get strapped to anything these days (more on this later) and we need to find a radiologist willing to experiment with the as-yet unpatented 'seated milk scan.' We can definitely keep Hallie in a chair for an hour and distract her properly, but lying back on a cold steel table is something that elicits memories of a. RSV shots b. ng tubes and upper GIs and c. quite possibly some NICU trauma in our girl. We firmly believe that toddlers have memories (and Hallie's seems prodigious--she remembers people and associations; she knows about twenty books and more episodes of Sesame Street---can even remember what letter of the day goes with what episodes---and Signing Time by heart and we are not looking to traumatize our kiddo further. More on this later, too). Anyway, so we'll try to do the scan and see if it works, and if it doesn't, we are not going to push it.

One reason we are doing this is to see if Hallie will qualify for an FDA waiver to use cisapride, a very good motility drug that has very bad cardiac consequences for a small subset of people who have Long QT syndrome (a cardiac arrhythmia). She would have to do a cardiac workup (EKGs etc) but it could very well be worth it if this drugs helps empty her stomach more quickly. She is very severely volume limited and very gassy and we believe very uncomfortable and has developed some negative associations with food because of this.

We will also treat her empirically for bacterial overgrowth in case that is part of the problem. This involves flagyl, a heavy duty antibiotic, and we're a bit concerned that Hallie will not take to it well (she has a history of not tolerating antibiotics) but we'll try.

And we're still trying to get someone to answer whether we can safely add digestive enzymes to her food just to see whether that makes a difference. I need to rephrase this into a simple 'yes or no' question and try to get the GI to come out for or against them next time I see them (on the 19th).

If we rule out motility, or figure out how better to treat it, we may be able to isolate what sets Hallie off food-wise more effectively. I suspect she'll be okay on fruits and that more protein rich foods will still be more of a problem, but at least we'll have more variety in her diet.

Speaking of diet, the other thing we talked about with the ped and GI was how to get Hallie to eat more willingly. Here I need to explain: Hallie VERY willingly eats 'safe' purees until she is full (often gets less in than she needs to gain, but not to maintain her weight). The problem is that she has never made the leap to self-feeding or dealing well with texture. We know that she can chew---she does this with her sticks and fries---but it is a lot of work and she tires quickly. We think this is because she has poor muscle tone in her mouth (no doubt about this one; this has also impacted speech production and as her speech gets stronger, so does her chewing, and vice versa). We also think her swallow is a bit off--she gulps with every bite to clear her mouth and it cannot be fun to do that. We are not sure if the gulping is related to some sort of inflammation but we know that it's not structural and that her paralyzed vocal cord is not the culprit (though it probably doesn't help things much).

The not self-feeding and not eating textured foods is one of the big things that keeps her from being a 'typical' toddler. She is eating at the stage of a 9-10 month old, not a 30 month old. And she requires a lot of help from us and eating becomes a full time job both for whoever feeds her and for Hallie herself. Toddlers don't like to sit still, so this reinforces the negative associations that Hallie has with food and fuels her eating aversions. Not to mention that it makes it hard for us to ever leave the house.

Our GI rather unhelpfully suggested to us (YET AGAIN) that we tube Hallie. Uh, no, we don't think so. Number one: who the heck tubes a kid who is at the 50th percentile for weight and demonstrates that she can gain well? Number two: tubes are massively contraindicated for DGE, and we are not doing a GJ tube. Number three: she is not delayed on most of her milestones, is making fabulous speech gains right now (she has numerous two to four word phrases at this point and hundreds of individual words and signs). So, no, not unless you can convince us that there is some reason other than convenience to do this. This is major surgery and most likely will gain us very little and lose us much in the process.

We explained all this to the doctors, though I still don't think they completely comprehended that Hallie is not classically averse to food---as long as she likes it, or she knows it's not making her sick, she willingly tries food (once she begins to realize that she doesn't feel well on a particular food, she will reject it. We see this as self-preservation and not as a feeding aversion). She will play with her food, as a couple of the pictures below amply demonstrate). And her vomiting is less frequently at meal time than after a meal---when she is stuffed and feeling nauseous. So some of the classic approaches to feeding therapy won't work for Hal. The question is: what will?

Our ped wants us to play around with letting her feed herself and control things more. We've been doing that for the past couple of days, and, while Hallie's made great advances in terms of texture, this process means that she is eating very little food (and we're having trouble letting go of calorie counting) and the process itself is very messy.

First, the texture advances: Hallie actually ate about a third of a whole pear yesterday. I cut some slices up for her into 'stick' shapes (and peeled them) and she ate four or five quite happily and then signed and called out for "more." We were thrilled and surprised since, other than requesting potato sticks or french fries, Hallie has never actually asked for more of anything (other than her bottle, which is mostly for comfort). So I cut up some more and she ate most of those too. She ate more at lunch. And then at dinner she ate about 15 fries (50 calories, plus some more for oil).

Hallie also expressed a lot of interest in feeding herself purees, but can't quite manage a spoon terribly effectively yet. She begins by dipping her spoon into the puree (either prunes--homemade--or jarred baby food pears and apples) and then gets frustrated and figures out that it is easier to eat this (and her cheese/yogurt mix) by hand. She thinks it's a blast, but she gets a whole lot more on herself than in herself.

Here are two of our favorite shots from the 'be your food' series:



Note to self: prunes does not make a very effective hair gel.

So, we're going to continue to let Hallie control things more and play around with solid textures and do a weight check in about ten days to see what she's lost. We are hoping that more eating of solids will yield more capacity to eat solids quickly (a big issue for Hallie is how slow it goes; she hates to be in the high chair for too long and who can blame her?). If we can get her to add more solid goat cheese (goat mozzarella) to her diet, we'll be able to get her caloric intake a bit higher too. Ditto with french fries. Our goal is a whole serving (which is still only 110 calories, plus oil).

It's taking a huge amount of self-control on our part not to run and feed her a jar or ten of food to make up for things, but as long as she's not dehydrated or losing weight too quickly, we've got to keep trying. And if, in the end, we can't do this ourselves, we will need some intensive feeding support (but it has to be the right kind, which is not going to be easy to find).

Speaking of professionals that one doesn't trust, behold the pediatric dentist. With some trepidation and foreboding, we took Hallie to the dentist for the first time yesterday (about a year late, even if we account for her prematurity). The guy we saw is reputed by a lot of parents to be the best pediatric dentist in town, but we beg to differ. First, the waiting room at 8am on a Saturday was chock full of people. We were a bit surprised to see so many parents (fewer kids, because the places discourages parents from coming back into the treatment area) at such an early hour. We waited our turn and finally went back to the dental zone. The dental hygienist was nice enough, but Hallie wasn't thrilled (she has lots of issues around people touching her mouth. Gee, with repeated intubations over the first 9.5 weeks of her life, a lot of scopes and OG tubes, do you think she's got a reason for this?

You will note in the photo below that only one of us is smiling:



The dentist then came into the room and had a look-see. He spent about five minutes with Hallie (and we suspect even less with her medical form, which was filled out by me, and required much more than the standard one line or two provided for details). He noted severe decay, including nerve involvement, on the molars (one required capping) and pretty extensive enamel decay on a few other teeth (I'm not sure how many because he was really not specific. There were kids in six or seven dental stations, one dentist, a few hygienists, and no real time to spend per anyone child. Truth is, it felt like a factory with a couple of toddler- and child-friendly murals and games in the waiting room). His verdict: give her a whiff of nitrous oxide, strap her to a 'papoose board' (he did not appreciate my analogy of said device to a strait jacket), cap one tooth, bond a few others, send her home. When we expressed concern about the emotional trauma, and how this might adversely impact her already fragile mouth-related stuff, he said 'she's young; she won't remember it.' (Reminds me of all those idiots who treated premature neonates without any pain killers because they thought neonates don't experience pain. Not true at all). As I said, Hallie remembers everything and is a very bright little girl. So we asked about alternatives. His reply: dental surgery with intubation and general anesthesia. Now we might go this route, but not with him, and we need to explore the middle of this spectrum: what about versed? what about other forms of 'twilight sleep'-ish drugs (like the ones Sharon got for the IVF and FET transfers; she really has no memory of these events at all). His answer: no go.

Our answer: no go to him.

So, if you are reading this and are in the Philly area and have a recommendation for a GENTLE pediatric dentist, please email me at abbyschrad at earthlink DOT net. We will be talking/calling around to other dentists, and particularly those who specialize in special needs kids and doing it pronto. We want to help Hallie and making her mouth stop hurting so much will probably go far in this direction (getting her to brush also will, we hope...Amy can do this, we cannot. Amy must train Hallie to brush for us. Not sure how this will go down).

Anyway, that was all a little disappointing. It's only after the fact that we figure out what kinds of questions we need to ask before we schedule appointments with new types of specialists. But better to do this, even if we have to pay out of pocket for second consults, than to traumatize our kiddo. This experience also just reinforces the sense that we have that we cannot ask the parents of typical kids for recommendations; they simply don't know our situation. It's not that we are pickier than your average parent (well, okay, we are pretty picky) but also that we are dealing with a special set of circumstances. And that's okay--we need to meet and treat Hallie where she is. And in the process, we really do find some of the best professionals out there, so it's not all bad, right?

The other thing that this all confirms for us is that mommy instinct rules. (in the interest of gender and relational equity: daddy and caregiver instinct rules, too!)

What else, before I draw this huge tome that resembles the 18th-century tract in terms of length as well as title, to a close? Speech gains: amazing. Hallie has an avid interest in counting everything but her favorite thing to count is her toes. She likes to pull off her socks at diaper changes and count them and count them after her bath and before bed at night. Lately, she has not only been saying "one-two-three-four-FIVE!" but following this up with "FIVE TOES!" She has also been approaching Sharon with the following phrase "read book mommy please!". I think this counts as a real sentence! Woo hoo! She has been asking for increasingly sophisticated things by their name, resorting to her "I want some that, PLEASE!" only when she cannot name it. Not everything is clear, and sometimes we have to guess (figuring out that she was saying "Signing Time!" and not "Rachel" for her favorite show took a bit of work but I managed to do it---especially with the help of her addition of a fairly good approximate of the title in ASL). But words and phrases are coming in fast and strong and we are thrilled.

The other milestone reached this week is that Hallie has figured out how to put on her own socks. She is thrilled by this. So she can handle socks and shoes at this point; she is working on shirts and pants but tends to mix the two up a bit. She'll get there. She always does.

And speaking of getting there: her cold is clearing (still coughing some, still a bit congested, still on Albuterol) and the vomiting has abated a lot. So we've clocked in 160 days without vomit in this house this year, so far. Never mind that caloric intake is down (the two do go hand in hand, alas!)

And finally, as if that is not enough, Sharon hit 31 weeks yesterday (and her 38th birthday today). The ped, who had forgotten that Sharon is pregnant and that he is the one who referred us to our OB, just thought she had put on some weight...but of course said nothing because he has a wife and three daughters and they have trained him well. It's kind of nice to know that Sharon does not at all resemble a full-term pregnant lady, which is what she looked like at 22 weeks with the twins. So our fingers are still crossed, but things are looking more and more like she will go to term or close to term. And we are grateful for this.

OK--if you survived this update, you are a courageous reader indeed. I will try to be more timely next time!

Thinking Outside the Box: When Solving Turns into Managing

According to Hallie's Feeding Clinic team at St. Joseph's, the only real problem that Hallie has is reflux---her laryngomalacia, her paralyzed vocal cord, even her intermittent colds would be minor nuisances without the aggravation that is being caused to her by reflux. She'd be eating normally, they think, if it were not for the evil reflux. Without reflux, we might not even be seeing our pulmonologist still; after all, Hallie's lungs have sounded amazingly clear and looked great in spite of the fact that they were not quite functional when she was born and they complicated her treatment during those critical first weeks of her life. We tend to agree with the sage folks at St. Joe's. The other night, Sharon and I were talking about this and other stuff and we realized that, up until this point, we've been handling the reflux just like we'd handle any other problem in Hallie's (or for that matter, our own) life: let's do lots of research (it's kind of sweet in a dorky way that we each decide upon the search terms independently, do the same searches without knowing it, and then compare notes and realized that YET again, we've crossed paths on the World Wide Web without knowing it). After the research phase, we go to the implementation phase, believing that, if only we light upon the correct formula, we'll manage to lick this thing once and for all. Then, when the solution fails, we take whatever empirical evidence we've gleaned from the experience back to the research table and begin again. That's pretty much how we handle most things in our lives, and by and large this has worked for Hallie, too. Back in the NICU when she was not acting herself, we had the entire medical team supporting our efforts (well, mostly supporting them) and this is how we ended up pushing them to figure out that an exponentially higher dose of dexamethasone had been prescribed to Hallie to get her off of the vent and onto CPAP. That instance alone corroborated our sense that our approach was correct and that if we can't figure out a solution to any problem, it's because we haven't looked hard enough, thought about it the right way, etcetera etcetera.

Well, we've just realized that we need to apply this tactic to our methodology, too: our search for a solution to this reflux problem is not proving possible. We've now decided to shift gears into management instead of looking for a cure. There is no one or two or three things that we can do to make the reflux just go away once and for all. Instead, we need to figure out how to alleviate the pain that it causes Hallie, maximize her comfort, and minimize our own distress at the fact that, like just about every other micropreemie I know, Hallie does not conform to some magic timetable out there that says that things will happen at a certain moment. Reflux will not just disappear at age 1 year adjusted just because the books and tables and pediatricians tell us so.

Honestly, I think we both feel a bit relieved. There will be days of better and worse eating. There will be days of more or less vomit. We need to take our cues from Hallie and if she is having a hard time with dairy products, we need to ease off of those for a while. And so on and so on.

This doesn't mean giving up; not in the least. We have learned a lot along the way in our search for the cure to Hallie's reflux. We know that congestion is one of the worst things for her reflux, and this means that we need to avoid ear infections and the such. On top of the no brainers like washing hands and making everyone we know wash theirs, too, and keeping Hallie away from sick kids and the places that they might play, placing ear tubes will (hopefully) help. And our magic-making pediatrician proved himself dreamy once again: Thursday morning (the morning after we had been in the office with Hallie at 7pm), Sharon got a call from his office saying that we had an appointment at one of the CHOP satellite specialty care offices for 10 am on Friday with the ENT. We were not thrilled at the wait at the King of Prussia office, but who can complain when we were done with both the consult and an audiology test (Hallie's hearing is basically fine; she did not cooperate for the whole test but she obviously hears in most registers and there was good inner ear activity until she decided to pull out the probes and stick them in her mouth) by 1pm? Anyway, Hallie's anaesthesia consult is on Tuesday (the one doctor free weekday in a 13 day period) and the actual procedure is scheduled for the 29th. So hopefully this will help minimize some of the sinus/eustacian tube congestion issues that Hallie has been having (note: these in fact may be congenital and not prematurity-related---most of Sharon's family is predisposed to yucky ear infections, sinus infections, drainage problems etc).

We have also learned that the thickening of Hallie's feeds helps enormously, and I recommend to any parent out there dealing with a refluxing and retching baby to consider trying thickening the baby's feeds.

And we've also learned that constipation is to be avoided at all costs. We finally managed a breakthrough (so to speak) on this front (or bottom) on Friday and Hallie's eating picked up a lot thereafter and she seemed a whole lot less uncomfortable.

Anyway, we're not giving up entirely, but just shifting how we think about things. And we still hope that some day the reflux improves, at least, and that Hallie enjoys eating more. Our feeding team doctor has given us some hope that this might happen; in her experience, she has yet to work with a neurotypical child who has not at some point been able to be taught to eat conventionally. This might take work, and it's definitely not as easy as "just give your kid cheerios/chicken nuggets/pizza and s/he'll eat!" It's just a matter of getting Hallie to a point where she can be taught that food is not her enemy and doesn't have to hurt. This may have to wait until she's older and better able to express what does and does not hurt (right now we guess) but hopefully some day we'll be able to put the reflux in a box, and not have it rule our lives, even if we still have to respect it and the role that it plays in Hallie's life.

Meanwhile, we need to be content that Hallie is ingesting her purees orally, that she can be convinced to drink her bottle, even if she still mostly sleep-eats it, that she has learned to sip on the honey bear straw and can drink a little thickened formula or juice that way, and that for us, solid foods = gerber puffs and not any of the foods that "all children" eat. We've learned a lot along this journey and one of the most important things we've learned is that eating is a complex and difficult task that should not be taken for granted. Hallie is sort of on the middle of the spectrum: our pediatrician thinks that she is the hardest feeder he's seen; our feeding clinic doctor thinks that she's one of the easiest cases she's dealt with in a while. It's all about perspective, and we're trying not to lose sight of that either. We're better off than some, worse off than others, and most importantly, we are where we are and we need to work with what we have.

That said, after her big Friday afternoon blowout diaper, Hallie started to feel a whole lot better. Not only did she have a good eating day on Saturday (I think she ate 4 ounces of yogurt, at least 12 ounces of other purees (quite possibly more than this, even), a few gerber puffs, and about 20 ounces of nutren with fibre). She was also a lot more playful. "Playful" for Hallie=messy for mommies. Yes: we do appear to live in a toystore. And yes, it's a very disorganized one. Here's a typical debris field scene:



Hallie doesn't seem to mind swimming with her toys:


And even though 'playing' still mostly involves throwing toys around the room (admittedly, sometimes chasing them around hockey-puck style, which is very fun to watch), Hallie has begun to learn to use some of her toys in more conventional manners. For instance, she loves to get out her little ball and play catch with one or both of us. And she has begun to put two blocks together (albeit inconsistently; these are still mostly toys for throwing) and attempts to do her puzzles (she knows which piece goes where in some cases, but not how they get into the appointed cut out slots). Mostly, she loves to play with her Fisher Price peek a block giraffe and roll around gumball machine and especially with her baby grand piano. Sharon and I have yet to figure out the pattern that turns on particular songs, but Hallie has accomplished this goal quite nicely. She has one or two favorite tunes and she consistently gets them to play by working the correct sequence of buttons and knobs and keys. This makes her very happy. I leave you with my favorite recent image of Hallie. The smile on her face says it all: