Out Like a Lamb....

...we made it through February! Yay!

And in celebration of Leap Year, Hallie had a vomit free day yesterday. Actually, we had one of the nicest days we ever had together.

Here are the recent pics I promised:



Hallie fills some big shoes! Yesterday, she actually made it across the room in my slippers.

Another one of Hallie's sartorial quirks is wearing the Parents soft blocks as bracelets. Doesn't she look like Captain Hook in this pic?



And, finally, our little climber likes to position her toys next to one another to create a ladder. Great. Here she's using her sorting turtle as a way of getting up onto the play piano. Ultimate goal: table. Not happening on our watch!

Long Time, No Blog

It feels like forever since I posted and I've been trying to find a few spare minutes to write ever since Monday. Alas, it's now Friday, but mercifully, Hallie is down for a nap (she woke up way too early today, at around 7:15, and had a very hard time going to sleep last night since she had one of her bottle-refund episodes and then couldn't settle back down easily, so I am not surprised that she was begging, in her own wordless way, for a nap by 10:30am). So I'll try to make this quick, since one can never predict whether a nap will last an hour (which it already has) or three hours.

So, bright and early on Monday morning (at 8am--not an hour that Hallie normally is up by), we had an appointment for a speech assessment over at CHOP. Given the earliness of the hour and the fact that our girl (like her mommy) takes a long time to wake up in the morning, we were surprised at how cooperative she was. The very nice speech therapist started out by asking Hallie to point to various familiar objects in a book (a ball, a dog, shoes, and stuff of that nature) and then kept going for several pages, finally maxing out Hallie's capacities when it came to identifying actions (not something that she really quite understands). She then asked Hallie to do various things with toys, watched Hallie turn around on command (she taught this trick to herself--we were not aware that she knew the word 'around') and go through her ever-expanding repertoire of signs. Finally, she listened to the various (and few) speech sounds that Hallie produced during the session (we got her to say her favorite word, 'kitty', but not much else). We'll be getting a formal written assessment at some point, but after all the tallying up of scores, it turns out that Hallie is at the 21 month level in terms of her receptive speech (which places her a bit BEYOND her actual age in this respect) and at the 12 month level in her expressive speech (4+ months delayed for her adjusted age, and about 9 months delayed for her actual age). Despite this wide gap, it's too soon to say that Hallie is officially apraxic. So the therapist gave us a bunch of tactics to use to help Hallie communicate expressively (making up a book or photo album of important pictures in her life, so she can point to what she wants and perhaps practice naming these things) and creating letter-boxes (boxes of cards that begin with a specific letter) with which we can practice Hallie's words. And she will give us the contact numbers of several speech therapists, but it's not clear whether insurance will cover this because the way scores are computed means that the two numbers--the receptive and expressive--are added together and then halved, at which point Hallie comes out looking like she is at about the 16 month level, which is totally fine. It's a pretty bad system, if you ask me, and designed to work against early-enough intervention for Apraxia. But it is in keeping with the very crappy health care system we have that favors intervention only once a problem has gotten out of hand and denies any assistance on prophylaxis to prevent a problem in the first place. That's bass ackwards, if you ask me, and even from a purely cost-control perspective (since it would be naive to assert that insurance companies are interested in people--lord knows that money is the number one priority), it makes no sense. It's precisely like all those situations where tens of thousands of dollars worth of surgery and g-tube maintenance is covered, but feeding therapy is not.

OK; I'm done with my rant here.

Anyway, we'll be working with Hallie and if need be train ourselves in the potentially useful therapy tactics (PROMPT, Kaufman praxis, what have you) to see if those things cannot help our kid find her voice.

Meanwhile, Hallie has definitely experienced an expressive signing explosion this week. She's picked up the following: dog (which she signed when she wanted her stuffed doggie), hot, cold, potty (which she used today to indicate that she had pooped in her diaper!), hat, cookie, apple, bear, help (which she is also using correctly), car, go, stop, and a bunch of others that I am now forgetting. She knows at least 20 signs and possibly many more than that---what happens is that she hears a word and signs it and that's how we realize she knows the sign. A few times this week, she signed 'yes' when the word 'yes' came up on the video but before Rachel had produced or spoken the word. I am not sure that this indicates that our girl can read, but what it does indicate is that she is familiar with sequencing and has a great memory.

On top of this, she is also experiencing a surge in her fine motor skills. I bought her a puzzle with shapes on it--it's one of those wooden ones with small pegs, and it contains a square, pentagon, rectangle, oval, circle, and triangle. We unwrapped it for her on Monday night and she took out all the pieces and put them all back in correctly, several times in a row. She is also using her stacking rings (she never used to do that), sorting her blocks like a champ now, and pretend feeding me (from one of the plastic Margarita cups she found in the sideboard and claimed as her own--apparently she's interested in hosting a cocktail party at some point soon). Anyway, she's a really cool kid and very smart and even if she doesn't ever talk in a conventional way, it's clear to us that she has a lot going on in that little head of hers and that she's finding ways of letting us know all about it.

We really do need to teach Ami sign, though: Hallie was signing all day for her doggie (which was upstairs) and Ami had no idea what she was doing or what the kid wanted. Sharon and I have both learned a lot of sign so far (Sharon is MUCH better than I am) and cousins Adam and Megan are learning a ton, and the rest of the Levy family (Sharon's sister, brother in law, and the other kids) have expressed a great deal of interest in learning, too. And regardless of what happens speech-wise, we really want Hallie to keep up with her signing. I think that a second language, whatever that language is, opens up new parts of the brain and opens up new worlds to whoever masters (or attempts to master) the language. It's a good thing all around. We had always planned to raise bilingual kids (we thought maybe Russian, Spanish, or after Karina was born, Chinese) but if it's ASL, that's fine too.

Hallie still has a bit of a cold and is still snarfly as a consequence (hence last night's refund episode), so there's been more vomit this week than any week in the recent past, but we are hoping she gets over this soon. We've taken to trying to get 6 ounces of baby food in her at every meal (up from four) and this is going well (for the most part, though the second or third time around after an upchucking session she's not nearly as cooperative as the first). And we're also working on getting her to drink out of an open cup (plastic, or the nosey cups), which she is enjoying, likely as not due to the novelty of the experience. We're not sure what her weight is right now, but will have to check this out pretty darned soon.

Finally, both of Hallie's 'stomach teeth' (canines) have broken through now, and we are still waiting on the two eye teeth. We know that at least two and maybe all of the first-year molars are through the gums (though not entirely in), but she wouldn't let me check today (which was probably a good thing for my poor fingers), so I can't say for sure what is going on with them.

Blogger is giving me one of its oh-so-fun-super-hard-times with uploading images, so I'll have to do these separately. I'm also busy downloading software to back up a (broken) RAZR to my hard drive (let's hope it works, because otherwise all of you whom I know IRL will never hear from me again because I've lost your phone numbers...). So more later...I promise!

The Good and the Guarded

This was supposed to be a uniformly positive, upbeat post. We've all been really quite upbeat lately with what has been going on with Hallie and I've been meaning to post for several days now but have been crazy busy and not able to sit down and write (and deal with converting a couple of recent movies we took into MP4 format).

Anyway, let's start with the really good stuff:

For the first time, ever, on Tuesday morning, Hallie said 'Mama'! Sharon was getting ready to leave for work and Ami had Hallie on the changing table and was changing her diaper. Hallie flipped over and stood up (as she is wont to do--this is one of those things we find bone-chillingly frightening), tried to reach over Ami to Sharon, and said "mama". Sharon had been trying to get her to say "bye-bye" (Hallie still just waves), but this was a pretty great substitute. Sharon called me just as I was getting off the train to Lancaster to give me the wonderful news.

So, of course, we tried several times to get her to say it on Tuesday night so that we could document the event. The only thing that worked (and that still works) is getting Hallie upset. Fortunately, our DVD player complied quite nicely with this request. Hallie had been bopping with Elmo to the "Bump-Bump Baby Bump" segment of one of the Sesame Beginnings videos we own when the frame paused mid-bump. For those of you out there interested in scientific experiments, let me just say that we've proven that sweet potato chicken splashed into a DVD player on numerous occasions is pretty much guaranteed to break it. Anyway, we got this video, which ends with one nice "mama" and a few classic whines. Forgive the real-life camera work.



Other than the DVD player dying a slow, painful death, we had a pretty good week until today. Hallie is teething--she appears to be getting 6 to 8 teeth right now and they are in various stages of popping through and so she is pretty miserable (and sleepless, as are all members of her family), but she's being a pretty good sport about things. Her vomiting is still way down (we've had 11 out of 22 days in February that have been totally vomit-free), and while her appetite has been off yesterday and today, it's been pretty good otherwise, and she's really been enjoying her Coach Farm drinkable goat yogurt. She has also been having a ton of fun with Karina, whom she has seen every night this week. We got the following cute video of the girls the other night: Karina shows off her penchant for hamming it up for the camera, and Hallie demonstrates her skills as a motorist and a climber. I, once again, demonstrate why I am not a gaffer, a best boy, a key grip, or a Foley artist:



So, other than the fact that we are all delirious because of teething (I really was up until 4am with Hallie, whose teeth were killing her, and then co-slept with a very fitful toddler until 8:30 this morning), things have been going quite well. So, where's the problem?

The problem was with Hallie's weight check today. We were in for our monthly Synagis shot and plopped her on the scale as usual. And we were SHOCKED. Hallie had lost about 13 ounces since February 6th---which amounts to close to an ounce a day. While it is true that we had backed off on the added calories and had first taken away the Karo syrup from her bottle and then decreased and finally removed the extra goat milk powder, we did not expect this kind of loss---just a leveling off of her weight. We had been joking that our girl was getting chubby, when indeed she had been wasting away. This threw us for a loop and sent us panicking. So, the Karo and the extra powder have now been added back into the formula and we are back to sleep-feeding her that final, huge 8 ounce bottle at bedtime. We are slated for another weight check and appointment with our pediatrician in two weeks. So much for not having to be back in his office until August!

This all shocked us, and made us realize, more broadly, how little Hallie is able to eat in a day. She is so dependent on her formula for calories, protein, and most of the good stuff that goes into her diet. Other than her goat milk formula, the kid eats about 2.5-3 jars of baby food a day, another few ounces of goat milk yogurt, a few ounces of homemade fruit puree, maybe a cheerio or five and a small cluster of Veggie Booty and some juice laced with Miralax. That's not much at all and we have been unable to increase the volume. This is clearly a problem and I wish that, one day, it would just go away on its own, but until then, we apparently have to micromanage Hallie's intake. This is sad, because we've been getting so much more relaxed about things and have clearly learned our lesson. I also suspect that some of the decreased vomiting is related to fewer calories in the bottle, and it's hard to admit that you'd prefer vomiting to weight loss, but this is all too true. Talk about a rock and a hard place (or at least a messy place).

So, in addition to feeling exhausted, I am (and Sharon is) a bit dejected. We are hoping that once the teeth are in, Hallie's appetite will improve and that, if she can gain back some of this lost weight---she has never lost weight before, other than the time last April/May when she was doing very poorly---we can begin to work on things like getting her to eat solids. We're hoping that this turns out to be just another one of those one-steps-back-to-take-two-steps-forward kind of a thing, but either way, this really put a damper on the week.

'

Happy Valentine's Day!

Last night, Hallie, Sharon, and I celebrated Valentine's Day at home, and then with our commune over at Josh and Nancie's. It was a low-key event, and we loved it that way. Last year, we made a mad dash over the ice to CHOP's ER for Hallie to get a dose of racemic epinephrine for the croup that would not go away on its own. It turned out to not be a big deal in the end, but it was pretty frightening to bring our girl back to the hospital. This year, no drama. Just lots and lots of love (and many flowers, which I have yet to photograph) and a nice dinner with our friends.

And one more vomit free day. Yippee! Alas, streak was a single-day-long, but still, that makes it 8 days in February. Not too shabby!

Seven Days In February...

in a row is our vomit-free streak. Alas, it was broken today, several times. It could be teething, it could be returning to the 6 ml of the Omega 3-6-9s or it could be that Hallie is just as allergic to soy as she is to dairy (she had some soy cheese and pureed edamame today). We'll cut out the soy, up the cal-mag and hope for the best. But at least we got 7 days. Which makes it a total of 11 days in 2008 that were vomit-free (not counting a few urps, here and there).

The other news: we heard a lot of "mmmms" today from our girl, and she even whined "maaaaa---meee" a few times. I am pretty certain that she did not mean 'mommy' in any conventional way, but hopefully she'll connect the two soon (and then figure out what she's going to call each of us!). What a sweet Valentine's Day gift to us. It even made the vomit easier to clean up. Well, sort of. OK, not really. Nothing really makes the vomit easier to clean up, other than catching it in a bucket or her food tray!

May your Valentine's Day be filled with sweet utterings from your loved ones!

A Mostly Picture Post

After realizing that we had taken very few pictures of our girl last week (and even let the camera battery run down), I've been trying to make up for lost time. It's helped that we've had a few fun events this past weekend that we wanted to commemorate, too.

First, our friend Kat (who is also an adult reflux adviser) came to visit on Friday. She brought Hallie a belated holiday gift/early Valentine's Day gift, and Hallie, needless to say, loved it.

If it's Elmo (or Sesame Street), Hallie adores it.





Witness her royal treatment of 'the boys,' as I like to think of them. Ever since Renee and Kim gave Hallie these finger puppets right after she got home from the hospital, she's been mad about them. Never mind that both of their hair is a bit shorter and more matted than when we received them. (Hallie has sharp teeth, and they will rival any barber's razor). She always pairs them up and frequently carries around big Ernie and little Ernie or big Bert and little Bert. It's interesting to watch her categorize. She has also begun saying a version of "Ernie" (it sort of has a 'd' or 't' in it; I am not certain why, but we'll take any name approximation) and now, along with calling Big Bird "buh buh" she calls Bert, "beh".



This next shot is a set-up. I just thought that pockets were the ideal place for Hallie's pals:



Little Ernie and Bert are nice stand-ins for Renee, who came over for her weekly fix of Signing Times, on Friday, too.

Friday night, cousin Megan and Grammy drove down to see our girl. Actually, Grammy came down to see Hallie and, while this was a bonus for Megan, she was here to get some help on her super-cool project on Northfield from Aunt Sharon. The two of them pulled all-nighters to make a very excellent model of the attraction that Megan devised for the town in which she lives. They also had fun at Pearl buying all sorts of creative supplies. I hope that Meg gets me a picture of the final results---I promise to post it. It's great having an aunt who is an architect.

But even if Megan was mostly here to do work, she couldn't resist playing with her littlest cousin. Here's a nice shot of our young keyboardist making a racket:



And, then, if that wasn't enough, the three of us and Megan drove down to Aunt Laura and Uncle Bryan's yesterday to celebrate cousin Adam's third birthday. It's funny that he and Hallie are a mere 16 months apart (to the day...today is Hallie's 20 month birthday). The party was a nice, family-only event that was replete with firetrucks (on the yummy and beautiful cake) and balloons. Hallie was especially fond of the latter, as you can see in these shots:




Here's a cute shot of the little cousins hugging Hallie, sandwich-style:



And here's a great picture of the birthday boy blowing out his candles:


Of course, any day in Northfield would be incomplete without a snuggle from Aunt Laura.



Aunt Laura was impressed and surprised at how heavy Hallie is getting.

And, then, just because, here's a great shot of Hallie playing in a sunbeam on the office floor yesterday. It's funny how much she resembles Bailey, our old dog, who used to do that.



And, finally, here's one of Hallie doing some homework. Busy, busy, busy...Which reminds me that I need to do some, too.


But, before I go, I just remembered that I saved the best news for last: we have now made it FIVE full days without a single vomit (and just two urps). This is a huge record and I hope we break it today!

Finally, a real well-baby checkup

Hallie had her somewhat delayed 18 month checkup this past Wednesday and I've been trying to get around to blogging about it ever since. First, it was notable that the reception staff no longer knows us by name. It used to be, last spring and summer, when we were there on average once to twice a week, they had our charts pulled before we could exit the elevator door. Not kidding. On Wednesday, they had no idea who we were. That was lovely. (On a side note, the CVS folks see us so frequently that they hand me Hallie's various meds without me having to say a word, let alone identify us. It probably doesn't help that I am known to hang out in CVS giving Hallie a bottle while praying fervently that she finally goes down for a nap in her stroller).

Anyway, I digress. We waited a few minutes for Leanne, Hallie's wonderful nurse, to call us in for assessment and Hallie ran around the waiting room, waving at kids, playing with the toys (I ran after her pumping her little hands with sanitizer) and having a blast. When Leanne called us in, we stripped her and checked her head circumference (44.8 cm or 17.64 inches) and height (32.3 inches or .82 meters). And then we plopped her on the scale (it was the heavy one in the back; and of course we know this. We have, in the past, actually asked them to check her weight on both scales on the same day. They are about two ounces apart). We were shocked. She is now 25 lbs. 2 ounces (11.39 kilos) (which is just shy of 20 times her birth weight). She has gained about 10 ounces in ten days (conservatively) and this is with all of the vomiting (no doubt in part this is attributable to our double-feedings, since we will refeed her after every significant, seemingly belly-emptying upchuck). But still, Hallie's weight astounded me and we have decided to cut back on her last bottle of the night. Instead of basically compelling her to take 8 ounces at bedtime (something that Sharon can do but I cannot), we just are going to let her take what she wants. This ends up being 3-5 ounces, and that seems fine. It'll mean more sleep for mommy, earlier crib time for Hallie, and some end of the bottle in sight for the whole family.

We attribute a lot of this rapid weight gain (she went from 21 lbs in early October to 25 in early February) to the fact that she is absorbing more nutrients from her food. This is part and parcel to getting rid of the cow dairy in her diet.

When Rubin (her excellent doctor) came in, he was beyond impressed with her. The first thing he said was that he had been comparing notes with our GI fellow (Friedlander), and that he knew things must be going well since NO ONE had heard from us for quite some time.

But seeing Hallie is what really impressed Rubin. He had never seen Hallie walk before, and this was the first time that she vocalized at all for him. Hallie's coloring is good and clearly she is thriving (she is at 50th percentile for weight, 50th for height, and finally made it on the charts for head circumference at somewhere between the 5th and 10th percentiles. I asked Rubin if he was concerned about this and he said that he was not---her growth curve for HC is exclellent and Sharon also has, as Sharon puts it, a pinhead.). Rubin did suggest that, as we begin to move towards more solids, we might want to get Hallie tested for other food allergies or intolerances (we agree---we strongly suspect an egg allergy and would not dare to give her tree nuts without hard data that she isn't allergic to them). But that's down the road. Meanwhile, even though we are still on mostly stage 2s with some thicker fruit purees, Rubin was heartened to hear about the cheerios and other assorted relatively-meltable crunchy foods and he thinks that there's little reason for a huge amount of concern (largely because of the fact that he has never known us to drop the ball).

So, the appointment was all lovey-dovey (and Hallie was generally happy being there, except for when Leanne stuck her with the HEP-A needle---but at least she only had one shot). I did have to remind Rubin that we still need to be vigilant because of the extremely high propensity that micropreemies have for all sorts of learning and behavioral issues down the road, and he agreed that this vigilance was warranted, but from his perspective, he couldn't be happier right now. We agree.

And we especially agree since the omegas are still working their magic. Hallie has begun to take an interest in stacking blocks and her stacking rings (she never used to want to do this at all, and perhaps the timing is coincidental, but still, the biggest issue is that she is staying 'on-task' a lot more these days and has a much longer attention span and a much lower frustration level than she has had up until this point. She is also happier in general, and this with teething (I suspect some stomach teeth are coming in now...is there no reprieve?). And the talking is going really well--she says 'kitty' and 'teddy bear' much more articulately now, and has extended 'bu bu' (big bird) into something getting closer to big bird (not quite there yet, though). She also articulated "m" for the first time this morning (two or three times) and I am hoping that we hear a 'mama' or variation thereof out of our girl yet.

So it's been a good week. And I almost forgot: we have now had two vomit free days in a row again, bringing the total for the year to 8 vomit free days (three apparently urp free; the only reason I qualify this is that two of those days were nanny-days and not mommy-days and so we were not on hand to witness this). And we have 2 2-day stretches. So February is ending up to be a bit better than it had started out in that respect.

Meanwhile, I've been an awful mama and we've taken very few pictures of our girl this week. But I did take a few last night of her chubby little thighs.



And, just so you know, these are all muscle...something very quickly revealed when Hallie leg thumps you with full force...oy.

Finally, a word about the cup. We've been giving Hallie Coach Farm Goat Yogurt drink, which she LOVES (I think it's really weird tasting---it's kind of like soupy runny chevre). Hallie especially enjoys it from a straw in the bottle (she has quite a good suck now, when she wants to) but that's sort of messy. So last night I gave her some in the cup she's holding in this picture. She immediately realized it was a Sesame Street cup and started to name the characters. Then she realized that the cup was even more fun: the straw pulls right out and is a corrogated texture. Better yet, the lid pops off EASILY. How fun! How messy! Needless to say, I won't be using this cup with her again for quite some time.

The Alpha and The Omegas...

Well, it's been a week since Hallie's been on Nordic Naturals Omega Complete 3-6-9. I read about the importance of these omega fatty acids for brain and speech development in Marilyn Agin's The Late Talker book and on the Apraxia children's boards that I've joined and was convinced that it was worth trying the supplement. There's been very little formal testing of these supplements in speech-delayed and speech-disordered children, and what testing has been done has been done on very small sample sizes (which of course garners less usable data than large-scale randomized testing with controls). Still, there's been some research, and even more research with children on the Autism spectrum and the data all suggests that these supplements can have a profound impact on speech, mood, attention span and the like. It's also clear that there is very little downside to these supplements other than getting your kid to take them.

So, what's the verdict?

Well, Hallie has yet to recite War and Peace or Crime and Punishment (yes, Russian writers in the 19th century were often fond of ampersands. Fathers and Sons--more correctly Children and Sons--is another great example of this). But she has done A LOT more talking and much more mimicking and babbling. She would NEVER willingly mimic us before this past week. It could take an hour to drag a one-word verbal mimic out of her (though it takes no time at all to get her to mimic a gesture or sign on command). We have heard a lot more word approximations than ever before and she has repeated these over and over. So, while we are not experiencing a miracle, we are seeing very, very perceptible progress. And she has yet to have an 'off' speaking day on these things.

Alas, there is a downside to the Omegas. I guess that most kids don't have violent and unrelenting reflux. Hallie, however, does. And these are, after all, ACIDS. And acid is not good for acid reflux (naturally). The lemon flavor of the oil, while very, very tasty for Hallie, who opens her mouth wide for the stuff, probably isn't helping, either. This--on top of the dairy that Ami mistakenly gave her this week--has had her system out of whack until today. It's hard to filter out things in terms of causality, but we're not ruling out that the Omegas are responsible for some of the chronic vomiting.

So now I find myself trying to Alkalinize Hallie's system. This isn't too hard to do--I figure that we can mimic the enteric coating that Omega pills designed for GERD-ish adults have by giving Hallie some Mylanta (which is calcium/magnesium) prior to giving her the acids and making sure that Hallie takes these on a pretty full stomach (before, we were giving them to her on an empty stomach morning and night). So far, so good. We're getting in a teaspoon of the oil (5ml) in the evening, after 5ml of mylanta and dinner. I'm hoping that this dose remains high enough to see good speech effects and that, now that the dairy is finally out of her system--as evidenced by an improving poop quality (yes, I know, TMI), we'll be back in business. Indeed, today would have been an urp- and vomit-free day had there not been a french fry 'event.' But this was mechanical, so it does not worry me. And Hallie's mood has been FABULOUS all day. In fact, she's been happy all week, vomiting and all. So, I am hoping that, as with the Goat milk and the Simply Thick, a bit of research helps move us along to a better place.

In the meantime, I am left wondering when I became a nutritionist (wasn't neonatology student and a rotation in GI with a subspecialty in reflux enough?)

Hallie in her Own Time (and in her Own Way)

This'll be fast because I'm supposed to be sleeping (yes, you guys hear that a lot). (EDIT: Blogger has been a nightmare with pictures, so this is anything but fast...indeed it took twelve hours to post this...I did sleep part of the time, though!)

So, after provoking huge amounts of anxiety in me about the 'no talking' thing, Hallie decided tonight to mix things up a bit. Again.

Tonight, she started practicing her 'b's again and repeatedly said "buh-buh" every time I pointed at Big Bird. She also said something that sounds a lot like "whassthat?" nearly all evening. And she tried to say "chair" (going over to her high chair). It came out like "chuh" but we'll take it. "It's Telly" (again, to Telly, on the television, naturally) came out very clear.

Is this proto-talking a phase? The not-talking a phase? Is she just not interested in telling us stuff one day, and interested the next? Much as we used to want to get into our wonderful old dog, Bailey's, head and find out what she was thinking about (we used to say to one another: 'boy I wish she could just talk to us for one day; I have so many questions to ask her'), we now feel the same way about Hallie (though want to communicate with her even more).

So, who knows? Like everything else, she seems to be doing things her way. Do they conform to typical development? Deviate from it? Who can say. All I know is that she'd be giving me a bunch of gray hairs if I didn't already have them!

And, because I've been a neglectful photo poster, I'm adding in the pics from this past weekend's concert.

This one is of a very cute Hannah and Adam.



In this one, Hallie is making her french-fry eating debut. Doesn't this look a lot like a normal lunch? We're not quite there yet, but we'll make it (although we did have a bit setback today when it was accidentally confirmed to us that Hallie is indeed cow-dairy intolerant. That seems to be at the root of a lot of upchucks in our past).



And in these two, Hallie is engaged in a very engrossing game of 'oh-no-peek-a-boo' with Adam and Hannah. She doesn't quite get that you cover your eyes in peek-a-boo (though she does use things like blankets to cover her head). Instead, she clasps her cheeks. Anyway, she thought this was hilarious and cracked up the entire time.




LATER: Since Blogger is being annoying, I guess I'll write more while I wait for the pics to finally post.

Anyway, Hallie had a super time at the concert and we were thrilled about the fries. And the mamas had a pretty great weekend, all totaled. Friday night's birthday dinner was FABULOUS (it was at a great new-ish restaurant called James that we'd been meaning to try but haven't had the opportunity to since we rarely go out anymore. The best part is that James, along with numerous other fine dining establishments, is located three blocks from our house. So, even though it was frigid out, we were able to walk. I love living in Philly for that reason.

Saturday's concert obviously rocked, and we got to spend time with our niece Megan who is getting help from Sharon on a school project.

And on Monday, Ellen (Hallie's first friend and nurse from the ICN) came over to babysit/spend time with Hal while we went out for Restaurant Week (to a very excellent place we'd been before, called Meritage. They have a great wine list, though we obviously did not choose from its very choicest offerings).

Paperwork, Scattered Thoughts, and Random (well, not so random) fears

It's way late (as usual) and I have tons of work that remains undone (also as usual), but one of the things that does not remain undone is the rather long questionnaire that I had to fill out for Hallie's speech assessment at CHOP. As I was filling it out (in my typically verbose manner), I kept thinking: "I do not want to be doing this, it should not be coming to this..." Of course, that changes nothing. I went through Hallie's rather extensive medical history, and realized how much I have become familiar with all of the terms and jargon associated with microprematurity. IVHs, ROP, PIEs, PDAs, and so on and so on. Ditto on the GI stuff---I can talk gastric emptying and swallow studies with the pros; I know my different PPIs and what drugs might do what (and how to administer them---boy do I wish I knew this back when our GIs never told us how to handle things; that would have avoided a whole lot of issues) and all about aspiration and preemie lungs and the like. As crazy as it sounds, I was hoping that I'd be able to leave it at that---that we'd be entering the world of terrible two tantrums and preschool applications and that I could, one by one, tick off the specialists we would no longer have to see, and I could begin to enjoy our kiddo, our survivor who, vomiting and scarring and all, managed somehow to squeak through.

I know this is selfish of me: how in the world can you be born at 23 weeks and just skate through?

So, here I find myself, learning all about apraxia and speech disorders and contemplating augmentive technologies and learning sign (and, for the record: I suck at languages, I really do. Never mind that I speak Russian, and can read--and could speak--Hebrew, and have ok receptive French if it's not too technical and can order margaritas and agnioletti with the best of them). I still am not a natural foreign language speaker and I am visual-pathway-learning deficient and, that said, I don't care if I do it wrong the first million times, if our baby needs to sign, I'll learn it. Who wouldn't).

There's a huge part of me that hopes I'm jumping the gun here, and just getting worked up in my typical way (sort of like Telly---one of the several words Hallie used once this week and that we may never, ever hear again--does on Sesame Street). And of course I hope that's the case, but my gut says--and has been saying for a very, very long time now--that that isn't the case, and that there is something wrong here. Language builds: you acquire sounds, first vowels and the consonants, and then you learn to string them together, and then you begin to attach meaning, and over time the phonology gets refined and you develop typical syntax, and you are speaking. That is the essence of verbal communication. Hallie's communication is so very different: she has screeches and vowel sounds (right now, "eh"s of various sorts) and did those late, and for quite some time. Then she finally began to babble, but only with the letter 'd.' Then she skipped stages and mixed up her consonants, but what was odd about that stage was that she would use a consonant a few times and then we'd stop hearing it. So she's had "k"s and "shs" and "s" and "d"s (haven't even heard those) and "b's" (most consistently) and a few pop outs with trilled "r"s and "m"s but over all, she just has her b's and she regresses as quickly or as more quickly as she advances. She might say "diaper" for a whole week, and then never again. Same with "paper." Same with "piggies" (though here she dropped the p and the s). And I could probably go on and on but find it too depressing, so I won't.

All of this regression, and these weird pop-outs (saying "up" once and never again) are typical of apraxia of childhood. Some kids get stuck where she is, which is at the no-real-usable-word stage. The form I completed asked me to note her first word and when she used it. What the heck was I supposed to say? Was I supposed to say the single word we heard all day---kitty---which isn't completely lost but this is the first time in at least a week I've heard it, even though she started saying it long before Christmas and used to say it a few times a day when prompted with a picture of a kitty? Was I supposed to say "b" which is what "Big Bird" who used to be "Buh Buh" and before that something that sounded even more like "Big Bird" but hasn't been in a while? Or does that even count, because Big Bird is no longer "B" but is a blank stare from my gorgeous little girl?

And it's not too comforting to think about the long-term prognosis because each case is so very different. Some kids learn to talk and do so fairly well. Others sound like they are non-hearing speakers of English and are yet fairly easy to understand. Others are not quite so readily understood by their peers. And still others require augmentation devices. And then, finally, there is global apraxia, and those who have that disorder find it hard to sign or make any kind of deliberate gesture and are trapped in a world where they want to communicate but cannot. As someone who loves to communicate, I find this all very very frightening and deeply depressing. And what I suppose is most maddening is that we simply won't know for quite some time what Hallie's long term prognosis will look like.

Meanwhile, I can already see some of Hallie's frustrations mounting. She tries to communicate and this sometimes does not work too well. Sometimes we do know what she wants and don't give it to her (as in: I want to stop eating, I want to climb on that dangerous item etc). But sometimes she is trying to tell us stuff and we don't know what it is. Sign has helped enormously: she has learned a few and teaches herself more each day. Tonight, she kept signing 'eat' when she was ready for bed (she wanted her bottle). We hope she picks up 'tired' soon---that will be major. And she can tell us she wants juice and not milk. Or a book---that one she's had for a while. And she is learning 'play.' And she seems so excited---thrilled---every time the Signing Time videos start. So this gives us some hope. But how can we make others learn sign so that she can communicate with them? And what about school---how in the world do we handle that when the only preschool that I have been able to find in the area that teaches ASL and accepts the hearing has a very small class size, no school bus, and is located across the city? What about her peers---how will she communicate with them? Right now, most of the kids around her are still verging on talking fluently, but that's changing quickly. Will they be so tolerant of her jargon when she's two? She's still babyish enough to pass for a baby, but every day she becomes more of a little girl, and I don't want her mind to be trapped in her body. She is so social, so expressive, so amazing, and so bright (she's begun categorizing and sorting her things, she clearly is engaged in some sort of pretend play, and she understands so much), and I don't want that part of her extinguished by the fact that she cannot communicate with others. I don't want her to be anxious or feel inadequate in any way, and she is so sensitive to everything around her.

Anyway, none of this is going to get resolved tonight, and my own anxiety about this is not going to help her much, so I will do the best I can do to advocate for her, to make sure that she gets the help that she needs, and I will try to have faith that her communication skills--whatever shape they take--will allow others to see her for the amazing little girl that she truly is.

And she really is amazing. I don't want this post to preempt the great things that DID happen this weekend. First, on Friday she actually did manage to set her record of two vomit-free (though only one was urp-free) days in a row. We are now up to a total of 6 days in 2008 that are without major vomit. And more importantly, she got to sample her very first french fry this weekend at the kids concert to which we took her, and Adam, Hannah, (and Megan) this weekend. Not only did she love it , but she kept it, and half of another one, down. And she did the same thing today. So this means that we are beginning to venture forth on the food front, and hopefully someday she'll be able to eat more typically. I know that she wants to and that, like the speech, we just have to find her a way to do so safely.

I'll post pictures of the grand event separately later on. For now, I'll just try to pack up my fears and trepidation and get some sleep so that I can be the best possible mama to Hallie in the morning. Even if she never has a name for me, she knows who I am and that my role in life is to play with her until at least one of us (usually me) is too exhausted to go on....

M

Still Growing Strong...

I've been a bad mama---not only are there no pictures this time around, but when I went to take a picture of Hallie who was looking super cute in Sharon's scooter helmet, I realized that I had let the battery on the camera run down. Sigh. Can't keep everything together!

Anyway, it appears that molar number four is about to make its appearance. Hallie was super fussy at the beginning of this week and would NOT under any circumstances go down to sleep at night, not even after her bath. This is pretty atypical for her, and unfortunately not only amounted to hours spent by Sharon trying to get the kiddo to calm down and take her bottle but also involved cleaning up the vomit after the bottle came right back up at her. Sheesh... We are hoping that we get some reprieve. I suspect that we might already have since today has been very calm, despite the RSV shots that Hallie just got. Hallie's been in a super mood today and has gone down for her nap twice without protest (both times in the stroller. Yes, it's a little weird to buckle your kid into the stroller for a nap, but heck if it works, I won't complain!) I have not had the chance to do a mouth sweep but will later on and see if I feel anything.

Yesterday, was my birthday and in addition to getting a very lovely gift from Sharon--a first edition of Mikhail Gorbachev's Perestroika autographed by both him and Raisa, his wife--I was also spared going to the FEES study (flexible endoscopic evaluation study) with Hallie by virtue of the fact that I had to go to work. It turns out that, even though it was not the most fun anyway ever had, Hallie did do fairly well. According to the ENT, while her left vocal cord is still paralyzed, the right is compensating well and things are virtually at midline. The reflux swelling is gone, and there was no notation of laryngomalacia. So there are no structural reasons why Hallie cannot swallow food and indeed at least limited indication that, in small controlled sips while awake, she can do okay on thin liquids. We'll still thicken the bottles and even the juice she gets from her straw cup somewhat, but we will work on experimenting with backing off of the thickener after our next Swallow Study in March. At least that will mean one major expense (for the Simply Thick, which I get off of Ebay) might go away.

The more troubling stuff that we're dealing with, however, is Hallie's speech. She won't mimic speech at all -- with a rare, rare exception of mimicking 'up' for me during and after her bath last night; of course I was thrilled but today she no longer does this -- and she has lost all of the 'words' she used to have and has not replaced them with new ones. It is possible that she is working on something else and hence not interested in speech, but what is interesting is how quickly she is picking up sign and how thrilled she is to do it. We are very happy about that, but worried about the speech. So Sharon talked with the excellent speech therapist at CHOP yesterday (who followed up with me today and will call again on Monday....plus she remembered us from the swallow study in August and not only remembered us, but the precise stuff Hallie was dealing with. In a word, she was awesome). Anyway, Staci, the therapist, is not an expert in Apraxia (and neither is Jenny, our also excellent ST through Early Intervention). But the symptoms Hallie is presenting with -- especially given how amazingly social and interactive Hallie is -- are worrisome to her. So we will fill out some paperwork and get ourselves an official evaluation and perhaps also visit neurology (there is a nagging sense we both have about Hallie's unilateral left IVH level 1, but even moreso, about the 'speck' of blood in the frontal lobe that no one could ever explain. I'm not sure how knowing about the IVH or other bleed would change things, but still we are curious. And once we get this evaluation, if it turns out that she is diagnosed with Apraxia, we can begin to get speech therapy that is tailored to that disorder---it is, from what I understand, very specific and very different than the sort of play therapy Hallie now gets. We hope that Jenny can learn some tricks for things to do with Hallie because we LOVE Jenny and Jenny loves Hallie. But we can also see if my insurance (evil thing that it is) or Sharon's (once it kicks in on March 1st...a month later than we thought) can cover additional private therapy. We'd do anything for this kid (and any kid, really) and want her to be as happy as she can be. Meanwhile, we are thrilled that she adores her Signing Time videos and are eager to learn this language with her. But someday, someday, we'd both love to hear 'mama' or some variation on that come out of our little girl's mouth...

To this end, and on the aforementioned topic of supplements, we've begun to add in some Omega 3-6-9s from Nordic Naturals that are supposed to be amazingly helpful for the speech for other kids with issues speaking. We know that a lot of the omega fatty acids are things that babies get from their moms via the placenta in the 3rd trimester and, since Hallie never had one of these, it's something that she missed out on. They cannot hurt, and if nothing else, they add in a few calories.

On the calorie front: we're not changing anything and are going to keep on keeping on. Hallie weighed in today at 24 lbs. 6 ounces, which is an 11 ounce gain since last month. This did not sound like a lot to me since she was 23 lbs 11 ounces last month and 24 lbs 2 weeks ago (on a different scale) but when the nurse charted Hallie for me, it turns out that she moved from the 41st percentile to the 42nd percentile for her ACTUAL age of 19 plus months. That's tremendous and we're not complaining. So, while we won't back off on the Karo syrup or the flaxseed oil or the added goat milk powder, we are still on track and if we have a bad day, it's a bad day and not the end of the world.

On that note, I gotta go get ready: Sharon, Aunt Renee and Aunt Kim and I are going to go out and celebrate my birthday tonight. Ami is going to babysit Hallie and we're going to have a great time! It's the first time that the birthday club has gotten together for a whole night out since June (we used to celebrate each of our big days this way).

The Good, The Bad, and the Yummy

This has been an odd end of the week and weekend, to say the least.

All week long, Hallie has been refusing to speak; even old chestnuts like "diaper," "big bird" and "teddy" had disappeared. This had Jenny, Hallie's speech therapist, pretty frustrated and upset. On Thursday, after she left, Ami, Hallie's nanny, was equally upset and vowed to redouble her effort to get Hallie to use whatever small vocabulary she has. I guess it was pretty hard to watch Hallie spend an hour avoiding saying the word "book."

So imagine my surprise when I received an email on Friday afternoon that Hallie's speech therapy had discontinued because she was insufficiently delayed. Within a split second, I had Jenny on the phone. She had been equally dismayed by the message when she got it that morning from Hallie's caseworker.

Can you say, oh no?



Hallie sure can.

But, as Jenny informed the Early Intervention caseworker, they'd be hearing from us as quickly as you could mouth the words 'speech therapy' (presuming, of course, that you are not Hallie).

Needless to say, I had shot off an email, left a message for on the never-answered office phone of said case worker, and tracked her down (via cell) in the field. I had also called her supervisor asking to file an appeal.

Jenny concurs with our assessment: Hallie does not use her words consistently enough to qualify them as real speech at this point, and, while her reception is pretty amazing, her spoken language needs lots of work. Not to mention the feeding issues. Which of course Jenny did mention when she spoke to the case worker, who retorted that OT could handle them. Except for the fact that our OT has not been trained to handle them, whereas our Speech Therapist has. Anyway, we're no shirking violets around here and we'll do what we need to do to get Jenny reinstated. But it's a major pain in the butt to have to deal with this.

Happily, there have been some positive developments in terms of communication and oral motor skills on Hallie's part this weekend and they have, for now, overshadowed our upcoming bureaucratic battle.

First, we received our first two Signing Times DVDs from Amazon and Hallie LOVES them. Not only does she enjoy watching them, but she has learned an entirely new (and pretty extensive, for her) repertoire of signs from them. She has been signing 'eat' all week (before the dvds came) but now signs 'milk' and means it, too. And she has randomly signed 'car', 'play,' and we think she tried to do 'fish' earlier on today. We have great hopes for progress in communicating. Like just now, we were giving her juice, and she signed milk. We replaced the juice with milk and avoided a mini Hallie tantrum (or at least whine).

Second, we finally made some REAL progress on solids. Friday evening, Hallie kept signing 'eat' and asking for Gerber Puffs. So I kept giving them to her. She must have had at least 25 of them, and none came back up. This was unprecedented. Plus, she was chewing really well and seemed to move the food around in her mouth much more effectively than ever before.

So, Saturday morning, spurred on by a lot of positive reinforcement from my preemie blog moms group members, we decided to try some solids with Hallie. Sharon was the intrepid one; I just stood back and let the magic happen. And it did: Hallie had 6 graham cracker sticks and a few fruit flavored cheerios for breakfast. It was clearly a lot of work for her to get these down, but she did it. She concentrated really hard on eating and sent very clear signs when she was all done. And after all this work, she seemed happy and relieved to swallow down her fruity purees. Lunch was a repeat performance, though she was a bit more tired and only had 2.5 graham crackers and a few bites of mushy pasta. She did drink a bit less than average, but this was okay.

And so, for a reward, we took Hallie to her first professional sporting event, the Philadelphia Kixx indoor soccer game. Actually, I lie: we would have gone regardless since Sharon's firm sponsors the team. Since we had a couple of extra tickets (turns out that kids don't need 'em and our niece Megan wasn't able to come down to visit after all this weekend), we brought Karina and Mark and Vanessa along. Everyone had a great time and the kids were really well behaved.




So, it ended up that yesterday was our second day this year that was both vomit and urp-free and our fifth day without vomit if you do not count the urps.

Today has been a bit harder--Hallie was tired and had a backlog of poop (more on this later). But she did manage to get in and keep down some cheerios and had a ball with the graham crackers and her latest food, rice chex. Even if they did not stay in, she was having fun and this counts for a lot. We're trying to be more laid back about things in general and are hoping that this sends her a signal.

Hallie's also been talking more, and finally learned how to blow. This seems like a small feat but we were a bit concerned that she seemed unable to do this. As Jenny has pointed out, Hallie is pretty low-tone around her mouth and we need to build up those muscles so that she can eat and talk more effectively. Of course, she's turned it into yet another tactic to avoid bites of food she doesn't want. What can I say, my kid is a master when it comes to avoidance tactics!

Anyway, back to the being laid back theme: it's a good thing we are since we had a few blowouts from both sides earlier this evening. First, Hallie splashed a bit of water on herself during her first (yes, there were more) bath and spewed forth some of her lunch (we have no idea how much). It's possible that she aspirated a tiny amount or it's possible that she was working on a 'gift' for her mommies.

I got her out of the tub and quickly dried her off and got her into some clean clothing. Then I began to smell some poop. This seemed odd since I had just cleaned her up from a pancake-poop (as we refer to it affectionately) immediately prior to her bath. But the smell was pretty strong. And got stronger. And then I felt the wet spot on my jeans. Fortunately, Sharon got home just around the time when I thought I'd need to deal with this alone. It turns out that Hallie pooped through her onesie, through her pants, onto me, got it onto Sharon, and ended up smearing numerous other objects and places before we were done. I guess she's cleared out now!

Which reminds me, I gotta go do my sixth load of laundry since Thursday. Oy!

Funky Hallie

Just a couple of pictures to tide us over while I compose a more substantive post about Hallie-related developments.



Hallie LOVES her chair and often dresses to match it. She has a pretty unconventional way of getting in, though. She used to climb over the back; now she goes in over the arm instead. Nothing is easy and straightforward with this kid! She also likes to stack toys on the chair, then get in and retrieve them (the keys she stole from mommy were the 'toy' of choice on this particular occasion. Sometimes she ends up knocking the toy off of the chair when she gets into it, and then has to get out and start the whole process all over again. Very funny little kid, our girl!



This second shot is from last night. The hat lasted a few minutes and the shoes not terribly longer. But the whole outfit as an ensemble made us think of the mod squad.

A whole bunch of things have happened since Friday, so stay tuned...

Jonesing for Tylenol

OK. So I knew that posting about our urp-free existence was going to fly back in my face (in that projectile kind of way that Hallie has mastered).

So, Saturday was lovely: Hallie woke up kissing and hugging us, had a great day, played happily, cooed, laughed, talked, and did not vomit.

Sunday, not so much. She tossed back everything we gave her for breakfast, lunch, and dinner. At least the kid is consistent. I'm not sure what that makes up for, but you do get high points for consistency in Early Evaluation, so I will give credit where credit is due.

Monday started out a bit better and she did manage to keep down her breakfast and lunch, but refunded dinner. She also refused napping at 11 and I ended up having to walk her to 'our cafe' at eleven, where she refused the bottle (actually, she tossed it out of the stroller at me with quite a bit of force). I raced out of the cafe and speed-walked her around the neighborhood until she finally fell asleep somewhere in Whole Foods and ended up taking a few ounces of bottle from me then. She kept it down, stayed asleep long enough for me to read one chapter of a book I am teaching but have yet to complete and scarf down a Sonoma Chicken Salad wrap. She did better at her 4pm nap, but then needed to get up at 6 for speech therapy. By dinner time she was none too happy of a camper---poorly rested, annoyed, aggravated, and complaining. And so she vomited.

After vomiting she did do something rather amazing (and frightening): we have a weird catch on our bathroom door that is a sort of lever-like thing that needs to be adjusted from time to time so that the door actually locks. The whole family was in the bathroom -- I was running Hallie's bath and fiddling with the lock and Sharon was using the facilities, and Hallie was marauding something or another. Or so we thought. Turns out that the kid was watching me from the corner of her eye. Not one minute after I leave the bathroom (locking the catch behind me so as to contain our toddling explorer) do I hear a shout from Sharon: "Come quickly, she just opened the door!" Great. And if you have ever been to our bathroom, you will know that the 'landing' which was constructed in the 1880s when they put the kitchen/bathroom addition on our house (which dates to at least the 1830s) does NOT meet code. There were no codes back then, so the landing is about a quarter of a foot deep. Not somewhere you want your toddler toddling and also not somewhere one can reasonably install a baby gate. Oy. Our days of peeing in peace are gone!

Anyway, Tuesday resembled Sunday to a tee.

And then we thought about things a bit more carefully and had one of those parenting Eureka! moments. The times when Hallie did NOT vomit were directly correlated to her having a dose of tylenol on board to take the edge off of her teething. The times when she did vomit, she was tylenol-free. While we're technically supposed to wait 4 hours between doses, she gets really cranky at three hours and so we've moved the next dose up a bit. We suspect that her dose is probably on the small side for her at this point since it's not been adjusted since she was about 21 lbs.

So now the plan is to keep the kid happily pumped up with her drug of choice (she used to vomit with baby ibuprofen, and we're not taking any chances!) and hopefully keep the edge off of those molars that are taking their sweet time coming in.

We implemented Project Tylenol yesterday and things were good. One urp, nothing else. I may have just jinxed us again, but I hope not!

Meanwhile, let's hope those chompers come in soon. And might I point out that the concept of teething is particularly cruel for those of us parents whose kids don't really use them to eat.

Look Ma, No Urps!

OK...it's now safe to report this, so report this we will.

Today was not only a vomit free day, but an urp free day. There were no urps, no retches, no gags, no gurgles, no send-ups, no clothing changes, no emergency baths, no frantic calls for rolls of paper towels and/or wipes, no regrets, and no mommy tensions.

Hallie did have more than four ounces at breakfast, more than four ounces at lunch, more than five ounces at dinner, at least 22 ounces of her goat milk formula, 2 great big poops, and one nice bath (with no ingestion of bath water, which alone would have ruined the day). (She probably also ate a few bites of board book, but that's another story).

She played with her friends, had her first outing to Target as a shopping cart rider (with great cover from Grammy covering any nasty germs on it), and had a wonderful day. She seemed even happier than ever---and all this in spite of teething (breakthrough of lower right molar seems imminent to me).

Anyway, this may not be repeated for a long time, but suffice it to say: it was a good day.