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Friday, February 29, 2008

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!

Saturday, February 23, 2008

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.


Friday, February 15, 2008

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!

Thursday, February 14, 2008

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!

Monday, February 11, 2008

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 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!

Friday, February 8, 2008

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 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.

Sunday, February 3, 2008

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?)