Growing, Growing, Growing

 

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

 

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

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

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

 

 

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

 

 

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

 

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

 

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

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

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

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

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

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

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

 

Just Chillin' in her Stroller

 

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

 

 

 

And here she is hugging Zoe:

 

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

The First Seventy Five Days!

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

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

 

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

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

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

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

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

Hallie's Eating Update

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

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

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

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

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

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

 

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

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

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

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

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



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

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



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

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

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

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

 

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

 

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

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

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

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

Great Un-noted Milestones

I was just sweeping through the house, picking stuff up, collecting laundry, and righting it after a day of being subjected to our use when I noticed something. Something important. Something momentous. And something so utterly uncelebrated by me as to potentially serve as the focus of therapy sessions years hence: Hallie peed on her potty tonight. For the very first time. And received no fanfare, no ballyhoo, and most importantly no Mo Willems Time to Pee stickers for doing so.

Quel hureur and shame on unmindful mamas!

The scenario went down like this: around the witching hour of 9:00pm, Hallie began to lose it and needed to go up to bed. Sharon got the bedtime meds and bottle ready and took her own prenatal vitamins. I headed up the stairs--with Hallie walking, and not crawling, up them, and holding onto the bannister like a big girl. This is no mean feat in our home, which features boxed in winding stairs worthy of the hardy early 19th-century Swedish workers who built our home (and violated, a priori, all building codes in force not much less than two centuries later). I celebrated this, of course, because I noticed it.

What I did not notice was that, after stripping Hallie of her pants and diaper (Hallie had previously removed her own shirt and socks), I asked our girl to sit on her potty to brush her teeth and pee. Brush she did, but I didn't think she did number 1. This is none too surprising because we've been putting her on the potty for more than a week now, morning and night, sans diaper, and asking her to pee. So I didn't make much of it, and when she got off, raced around the bathroom a bit, and then headed, naked tushie and all, down the hall to her room and flopped onto the bed, I took it in stride. I got out her diaper, her jammies, and we began the typical night time ritual.

But, just now, I noticed what before went unacknowledged by me (in yet another demonstration of inept mama-hood): a teeny, tiny, trickle of pee. Her very first use of the potty (unless one counts drumming...she does quite a nice solo on the lid).

I wonder if it's possible to give her a sticker tomorrow in reward for what she did today? I also wonder if she'll repeat her act. I certainly hope so, and this time I'll be armed with the marching band and all.

In other milestone notes: on Sunday morning, Hallie strung together her first spontaneous three-word sentence: "One red ball." She has uttered three-word combos before ("How are you?" "I am fine" and any imaginable combination of words from Mo Willem's Pigeon series). But never before has she spontaneously said anything that consisted of three distinct and completely articulate words. One red ball, indeed.

Finally, in other milestones: we have officially been put up against a wall by the ped and are stripped of our maternal control over Hallie's feeding regimen. Our ped, who, as it turns out, does not live with Hallie and has not witnessed the extent to which her eating issues are not mostly behavioral, is convinced that he has no proof that her responses are allergic. (This is the same ped who refused to refer us to an allergist to begin with and for whom her neither her phenomenal growth only after being taken off of cow milk, nor the famous fourteen week cold that never went away while Hallie was on pediasure and nutren jr., apparently is not nearly empirical evidence enough to convince him that Hallie was responding negatively to dairly). He thinks that we're the problem, not the solution and will hear none of our side of things. So, against our better judgement, we've decided to let Ami, our nanny, whom he has charged with allowing Hallie to 'graze' (how one grazes on Stage 2 purees is not only beyond our grasp but also beyond Ami's) on a variety of foods. Why have we gone along with this? After answering, curtly, 'I'm simply not sure', I will elaborate: both Sharon and I are convinced that a component of Hallie's issues is not allergic, per se, but related to her delayed gastric emptying. We both think that she probably can tolerate small amounts of some foods--fruits and veggies in particular--but we're not sure which foods or how much. So what we have Ami doing is feeding Hallie more liberally from a diet of available (and lord knows we have more than enough rejected jars of various baby foods to do this without going out and purchasing a thing) fruits and veggies on a rotation. We'll see how this goes, but it kind of kills me to take a kid who seems to be doing better than ever before and muck things up. That said, it would be nice to choose from a broader diet of foods and there is a strong chance that her system has matured some and might be able to tolerate a wider variety of things.

So far...hard to tell. She ate a jar of sweet potatoes with gusto at brunch (since we were at the ped's through the late morning and she never did get breakfast) and seemed okay. She had some apple/blueberry later on in the day, and did urp a few hours later---ruining the potential for adding another notch for a vomit free day to our belt--up a few mouthfuls when I returned home at 6pm. But she went down okay (meaning that she thumped on the wall of her bedroom with her feet for a while but did not vomit) tonight. So the jury is still out on this. We'll see.

Otherwise, like I said, Hallie is doing great. She is pooping well (which is critical), is quite happy and giggly and talking up a comparative storm for a really quiet kid. And she's gained more weight. At the official weigh in this morning she was 29 lbs. 12plus ounces, and this is great. I suppose we need to experiment in the way that we are when Hallie is doing well, and doing well she is. Yet the empathetic, paper-towel- and vomit-averse part of me hates to muck things up. Like I said, we'll see.

And speaking of seeing, I do promise to get some pics up soon!

Nowhere Fast in a Hurry

I actually do have some cool new pictures of Hallie from our friend Charlie's 3rd birthday party today to upload from the camera (that I wish was a D-SLR...she moves too fast for me to get good shots of her these days, and the limits of our little sony camera are palpable). But I'll do that later. Meanwhile, I just want to vent a little, so indulge me.

So, as anyone who is actually still reading this thing now that I've been remiss about posting pictures is fully aware, Hallie failed beef last week. We're still feeling the impact of this fail, as is typical for her, a week later. And when I say that she was 'eating beef,' do not even stop and imagine that she downed a slice or two of roast beef a day. Far from it. On day 1, she ate a half a slice. Probably the same on day 2. On day 3, not feeling quite herself, she had perhaps a few tiny bites (think a few millimeters each). On day 4, lots of refusal and perhaps a few tiny bits that actually got into her. On day 5, total refusal. On day 6, two tiny pieces and the vomiting began. And then we pulled the beef, but she just kept vomiting. It was that old school, awful projectile kind that emptied her tummy and made her -- and us -- very upset. Finally, the vomiting died down but the reflux--hiccups, urping, visible discomfort and gurgles in her throat--remained. We've logged another 2 days (I refuse to jinx today by saying anything about it) of vomit free existence, but only by modifying Hallie's intake to smaller meals and trying to keep her reflux at bay. So we've hit day 153 of vomit-free existence, but sadly we are no further towards our goal of having her eating more food and a greater variety of food. Instead, we spin wheels, we count (insufficient to achieve growth) calories, and we cross our fingers. But we don't actually get anywhere.

Except for the fact that we lose foods. When she flares in terms of her allergies, Hallie gets food averse. And then she seems to start reacting to foods that were possibly safe. This is now happening with prunes, also known as the only source of iron in her diet (other than a multivitamin that cannot quite provide her with all her needs, particularly since her iron stores were long ago depleted). She used to love prunes, and even ate boiled and fork mashed ones (not just the stage 2 baby food ones) but no longer does she eat them. Instead, she takes a bit, gags, retches, and we stop giving them to her.

This happened to apricots (which were never a clear pass) and bananas (that we thought were a pass).

So now we are down to four foods that we know are safe--white or yellow potatoes, goat milk products, apples and pears. We're keeping the prunes on board for now, but it's not clear for how long they will stay a part of our lives. We may be adding them to the large quantity of jars we pass on to Taylor when she's ready for solids.

Anyway, this is getting really hard to do. If we keep Hallie on her current diet (do we even have a choice?), we can get into her on a good day the following foods: 18 ounces of stage 2 fruit, give or take; 18 ounces of goat milk fortified to around 26 calories an ounce with concentrated goat milk; 3 ounces of goat cheese thinned with goat yogurt; and a few french fries (when her reflux flares, she refuses these; when it doesn't flare, she might eat 10 to 15 fries) and maybe a dozen or a few more of her beloved krinkle sticks that are all of 110 calories per cup. Maybe she'll deign to eat between a half ounce to an ounce of solid goat mozzarella. So, on a good day, we'll hit about 1000 calories. On a bad day, she might be at 800. On a really bad day, we eat all the calories and she does not. For the sake of reference, she needs about 1300 calories to keep growing. She is not growing. I'd be surprised if she doesn't weigh less than she did around her birthday (when she had more foods than she does now, and namely the nicely caloric banana. We pulled that because the vomiting described above happened and when we pulled it, things improved massively).

On top of this, she is on stage 2 baby food, except for the goat cheese (solid stuff; the chevre we mix with yogurt to get more into her) and the fries/krinkle sticks. We have made just about no progress transitioning to real solids, and this in spite of the improvement in her chew because her dysphagia is so pronounced that it is keeping her from swallowing the boluses that food turn into after being chewed comfortably.

So, clearly the platitudes of 'she'll outgrow reflux at age 1' and 'she'll start outgrowing her allergies at age 2' do not hold true for Hallie. And the more and more we continue trying and failing food, the more and more certain I become that she has an Eosinophilic disorder, and not a food protein intolerance. It's a matter of that which quacks like a duck and looks like a duck is in fact often a duck and rarely ever a cow. She has most of the symptoms of EE or EGE: intolerance to food, pronounced reflux, delayed gastric emptying with constipation, dysphagia, trouble sleeping when she flares, GI allergic reactions that are compounded by seasonal allergies, and often really stinky poops. And she has a really strong family history of food allergies, asthma, eczema and the like. She does not have failure to thrive, but the way things are going, we are headed there yet. And she massively improved when we pulled dangerous foods, and that would in fact be the treatment of choice, yet how are we supposed to handle all of this when the foods she has cannot possibly sustain her growth long term? We desperately need another calorie-rich food, but those are precisely the foods with which she has the greatest difficulty, and I haven't been given a crystal ball or anything that might help us shortcut the process to finding another safe food if, in fact, one exists.

And yet telling this all to the GI and allergist is landing on deaf ears. They scoped her in August 2007 and it was ostensibly clean (how were the scopes done? were enough biopsies taken? who read them and did they stick to the protocol established at the University of Cincinnati, which is the premier place for studying pediatric eosiniphilic disorders? Who knows, really, but I do know that I was not equipped back then to ask these questions, which is too bad, because they really are good ones.

And why is it that the traditional diagnostic protocol was not maintained for Hallie? What they needed to do was to RAST or skin prick test her first, then do a blood and stool work-up, then scope her, then move to patch testing. We missed the first two of these, and I'm not terribly confident in the third test for aforementioned reasons and also because the lung wash came up tainted, so who can be sure that the scope's results were accurate. Skin prick testing and patch testing might provide us with guidance about what to not even bother trying, so it makes sense to me that we should go this route, followed up by patch testing of foods we want to try. Not that we passed the foods that did not test positive on the patch; we didn't. But at least it will give us more information.

If it is an eosinophilic disorder, it may not change things other than provide her with a label that suggests that she has a chronic illness, and this would perhaps allow us to get elemental formula paid for by medicaid or something in the event that she has to go on this. It might also open up new therapy approaches for treating her dysphagia.

But, then again, rescoping her would mean purposely flaring her for six weeks, and I am not sure we want to do that and I am not sure whether that wouldn't make her food aversions all the worse in the long run.

So I am feeling a bit stuck right now, but I would love to get allergy and GI in the same room together so that we can start treating Hallie as a whole person and not as a one-or-another-system. That approach is failing miserably.

On other venting topics, now that I am at it and have worked up quite a lather here at the keyboard: pre-school. Our friend Anne has a post up about this, and this is something that we have been dealing with, too. Yesterday we had a transition meeting with the early intervention folks from Childlink (who handle birth-to-three) and Elwyn (which handles three-to-five). It is abundantly clear that Hallie qualifies for a continuation of early intervention services. Her speech is delayed by quite a bit, in what I think of as an oddly idiosynchratic way. She has a ton of words---hundreds, really---and she knows what they mean and she repeats stuff we say (more and more each day) but she does not use language to communicate, unless you count labeling (saying "elmo" when she sees Elmo; saying "stick" and holding it up when she has a potato stick) and counting (up to 20 with great accuracy) and saying the alphabet (in order, while attempting to sign and getting most of those signs right). She also has hundreds of signs and she uses these to label, too. But other than that "I want..." formulation and a few rote phrases ("how are you?" followed immediately by "i fine" and then quickly "bye-bye" into whatever stands in for a phone or, less clearly, "where'd it go?" and "there it is?" but the thing is that there really isn't a there there when she says the latter), she has no communicative speech whatsoever. It's very odd. She never babbled, and she certainly never had jargon. She got individual words, she kept individual words, and she's stuck on individual words. These are very accurate signifiers used appropriately with their signified, but they don't really allow for much in the way of conversation. So where does this put her on the expressive speech production front? In terms of the number of words, probably 22 months. In terms of communication, far beneath that. And cognitively, she's at least at age level if not above. But if this alone does not constitute the 25% delay necessary for keeping services, let me assure you that having to be strapped into a high chair and spoon fed stage 2 foods most certainly does. That's kind of at the 9 month level, with perhaps a few extra points for handling a french fry.

So, there's no question that she needs some assistance. The thing is, where can she get this? Well, one of her big needs -- and this too helps push her in the direction of needing EI from the 3-to-5 folks -- is in social skills/communication. She has no idea how to approach and interact with other kids. She's not been around many of them largely due to the circumstances of her birth, and her speech issues do not exactly lend themselves well to being able to communicate with her peers. So a preschool setting is ideal. But no private preschool (and since preschool is not a part of the formal educational system, most preschool is indeed private) would have her. Passing those nasty IQ tests might be an issue (even though she'd be great at the puzzles, sorting, building with blocks and such at this age). Once they got to the good old interaction part, we'd be doomed. She would need to do an interview at schools where she played in class with others and engaged in typical activities (circle time and such) and she'd give herself away then, if not sooner than that. Then you get to the whole issue of eating: montessori is clearly out because they won't feed a kid, and Hallie won't eat without us feeding her -- unless you count a few 'sticks' and assorted board books and blocks and stickers and other fun calorie-free stuff she can chew. But even non-Montessori programs wouldn't be keen on the whole high-chair-with-distractions routine. And then we get to the bottle issue and the potty trained issue, and it's clear that we are of the 'need-not-apply' variety.

I'm conflicted about the whole private pre-school thing, to be sure, but I would have liked to have had the option to at least thumb my nose at their high tuition-in-exchange-for-breeding-type-A-kids and not been ruled out as an applicant before I even downloaded their applications.

So, where does that leave us? The only option seems to be a Head Start program, and even that's not a given. Head Start was initially part of the Great Society program started under Lyndon B. Johnson -- in January of 1965, the committee of sociologists, psychologists, pediatricians, etc that he and Sargent Shriver and Dr. Robert Cooke put together were trying to figure out ways of assisting kids who were at risk because of their families' poverty as a way of minimizing or closing the achievement gap between them and kids of a middle- and upper-class background. The theory was that, if you gave 'at risk' populations a head start in life, they could do much better in the long run. It was found that this start really needs to be early on. It's a great program, and underfunded (we're too busy sending the AIG execs on junkets and paying big holiday bonuses to now-bankrupt companies that are running our 401ks into the ground to care about investing in silly things like the future human capital of our country....one can only hope that priorities change soon, though to be sure Obama inherits a nightmare wrapped in a really bad dream where this is concerned). But where this concerns Hallie is that 10% of all slots are reserved for children who have special needs, and so this is where the EI folks want to begin to think about placing her. Now, we're pretty middle class (though it does not often feel like it; clearly, even though we live paycheck-to-paycheck in a fairly serious way, both Sharon and I have a lot of education and we provide Hallie with a lot of early learning tools as a result of this, and she is thriving because of this). Anyway, there are a lot of other middle class people around us. And a lot of private pre-schools. Not a lot of Head Start ones, though. We're not particularly a neighborhood at risk. Which raises a serious question about where these schools are located, what their facilities are like, how well they are funded, do they have a sensory gym and the stuff she needs for stimulation, and how is their student-teacher ratio? Then let's add in questions like "can they keep our kid safe when she has an allergy to almost everything?" (not an incidental question when one considers that the conversation that I overheard today at the chi-chi natural food store with millions of gluten-free this and casein-free that's went as follows:

Mom of GFCF 9 year old: but that has gluten in it! He can't have that!
Cafe worker 1: it's just a little, and see, it's only on the outside!
Mom: We are not buying this.

(Kid has major tantrum. Mom drags him from store screaming)

Cafe worker 1: Can you believe that! It was just a little. I could have taken it off the top!
Cafe worker 2: Oh, he's just spoiled. It's just a little. How silly of her!

Clearly, they don't get it. And if they don't get it, will staff not educated in food allergies trying to keep a million kids under control really understand that, yeah, there's cow milk in cheese, and flour in cookies, and no it's not safe to serve her the same stuff as other kids and yes, you have to make sure that our oral-seeking-food-averse 3 year old does not eat those cheerios off of the floor? I am dubious, and that's when I'm being charitable. Plus, add onto this general fear the fact that the Head Start programs don't have school nurses or anything like that, and cannot and will not administer medication to a child who is on medication, and we end up with a bit of a problem. The only program for pre-school children with special needs that is not part of a respite home/hospital for long term pediatric patients in the city that does have a medical staff is for children with needs far more special than Hallie's.

But if we opt out of this, what do we do about services like speech and feeding and OT and self help that Hallie really does need? What do we do about socialization? We might be able to go somewhere for the former, but what about the latter? We're already quietly encountering the fact that other parents of 2.5 year olds don't exactly think it's appropriate for Hallie to be part of their toddler's daily play experiences because, well, you know...she isn't reallyfunctioning at the same level as they are, and what, exactly might they learnfrom her (the great fear being gagging, coughing and too much television watching).

So, ultimately, I have no answers. Just a nagging sense that we're not going to solve the eating issues any time soon, and perhaps never at all, and a sense that I cannot put my baby into a place where I worry about her safety, yet simultaneously a fear that if we do nothing to help her adjust, things will or at least could be so much worse for her when she does start grade school (which pretty much over our dead bodies, and even then I think we'll write this into our wills, will NOT be any time before she is seven years old. Kindergarten can wait until she's six, and first grade will wait until she's seven. That should give AIG enough time to spend down the rest of my retirement account and perhaps her paltry 529, too, and if I have to work forever, well, I already have to do that, and grading a few more papers with run on sentences (not like these lovely things I write!) won't kill me (most likely). But even though I know these things, I don't know what awaits my little girl in the future--immediate and long-term--and I don't know how to control things so that her life is easier and happier. Those of you who know Hallie in person know that she's incredibly sweet, amazingly bright, and totally curious. I want others to see these things, too, and I want others to want to protect her and ease her way as much as I do. And that's what I can't make happen (I also cannot wave a magic wand and make her tummy and GI and immune system better, and I cannot erase the scars that lace across her tummy, and I cannot make her voice more assertive....sometimes it feels like, even though I love her like I do, I cannot provide the things I want to for her, and that just makes things all the worse on nights like tonight).

Seasonal Allergies????

Real quick update:

Sharon was talking to Laura (her sister, Hallie's aunt) yesterday about cousin Adam, who has a horrible case of the sniffles. They're keeping Adam away from Hallie in the meantime, just in case it's a cold, but in passing, Aunt Laura mentioned that Adam's issues were probably related to the recent onset of Ragweed season.

And that brings us to the following intriguing possibility: what food (among others) cross-reacts with Ragweed? Banana.

Fascinating. (I get a lot of this info from the fabulous boards over at POFAK---see link on the left if you have a food-allergic kid and are reading this and are not yet a member. The 25 dollar membership fee is TOTALLY worthwhile). Anyway, after doing a bit of research last night, I emailed our allergist at CHOP, who said that this would not surprise her in the least. Periactin, while a good appetitie stimulant (but one we're not sure is working) is not the best antihistamine out there. She'll email me back (I hope) with recommendations for a different drug or drugs (talk of some kind of nasal inhaler) and the appropriate dosage(s).

Before bed last night and upon waking, I began to think again about our past experiences with Hallie. We were pretty certain back in April/May of 2007 (when Hallie was still shy of one year old) that she was experiencing seasonal allergies, raised this with our pediatrician, and was told by him that this was not possible since she had never lived through an allergy season. Although I retorted that people---including us---probably brought pollen into the NICU on our clothing, this got me nowhere. Life was miserable from April/May until September/October (14 week cold, a couple of brief hospitalizations, a triple scope, failed attempts at antibiotics, three ear infections, then ear tubes). Things got much better when we pulled milk in November, and even better in December and January (when the kid lost weight but went two whole weeks without vomiting). Things remained fairly good unless Hallie was failing foods back in the winter and spring of this year, but there was a rough patch in January when there was unseasonably warm weather and hellishness again when things started growing in earnest in May. June was a bit better, with some rough patches related to her being out of doors and playing in fields (see our post about her vomiting in Olivia's grove, for example). And we were generally pretty okay in July but things got rough again in August, pretty much at the moment Ragweed season got underway here.

OK---so this is my sense of what's going on. The kid has food allergies to some significant things (positive on skin tests for egg, wheat, barley; unquestionable food reactions to cow milk, soy, buckwheat, and rice). She may or may not be allergic to peaches and blueberries (I'd guess not if I were a betting gal, and with Hallie as the subject, there's frankly too much risk involved!). Beef...who knows? But seasonal allergies...yeah, I think we've got those. So the question is what to do about them. Let's hope the allergist (who did after all email me at 7am on a Sunday morning) gets back to us soon. I suspect that we're going to put her on something stronger and my bet is that we end up with another allergy appointment (after allergy season ends, I hope!) that will involve us pulling Hallie off of antihistamines for a little bit and doing a few skin tests for seasonal stuff. I'm all for that. If we can figure out what's going on there, maybe we can figure out the food stuff. And down the road there are always allergy shots for the seasonal stuff should it become unbearable to her...

Alright, that's all for now. But I am relieved to once more be thinking that there are at least times of the year when our banana-loving kiddo can eat (bite small amounts off of) her beloved 'nanas'.

Re-Ducks

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Hallie has always loved bath tubs and they don't really need to involve water, either (though she's a big fan of that too). Whenever we get a new tub (which has sadly been all too often because the inflatable tubs spring leaks really easily and no one can ever find the tiny little included patch kits when they do), she has to check it out by getting inside it, lifting it and throwing it in the monstrous clawfoot tub (the big reason we have her in a toddler tub at this point to begin with), etc.

Well, the ducky was an emergency purchase for us by Aunt Vanessa when our last tub not only sprung a leak but refused to stay inflated beyond pancake status. It was too small for Hallie from the outset, but it sure beat not having a tub for our nightly baths. So this week we replaced it with a Primo Eurobath (which is a great tub, though Hallie hates it...she wants to be able to kick at will and push forward so that she can reach the faucet, the soap dish, and anything else that might not be nailed down. The Eurobathhas positioners to prevent the baby or toddler from slipping forward that get in Hallie's way and as all of us who know Hallie know quite well, we should NEVER get in our girl's way when she wants something).

Anyway, we've left the ducky tub in the bathroom this week (mostly out of laziness) and Hallie's had a blast playing in it. Lately, she's loved mirrors even more than usual (she always has liked them, and needs to check out new accessories she's wearing in a mirror or mirror-like object like the TV or dishwasher front). And her favorite thing to do when looking in the mirror is to say "Hallie" and point at herself. Sometimes Hallie sounds like Hallie and sometimes it sounds like "Haddie" but we definitely know that she can recognize herself.

And she can totally recognize these kids, too:




She may not be able to jump yet, but she sure as heck had a great time in the trampoline with the little cousins last weekend.

Ever since we got home, we've been checking out photos of the cousins this past week and Hallie loves saying "Ah---dam" and "Han-nah" and made us very happy since she pointed at a picture of Aunt Laura and said "Laura" as clear as day.

Right now she's headed back down to the shore to see the cousins and Grammy and Aunt Laura and Uncle Bryan. I need to go to DC for work tomorrow so I can't join them (but I can blog about Hallie to stave off my loneliness and how much I'm missing my girls).

Anyway, speaking about blogging, blogging helps a lot when you need to reconstruct a timetable around things. Sadly, the things around which we need to reconstruct timetables mostly seem to be food-related, and once more we are dealing with a mystery as to what is going on with Hallie. Truth be told, after a fabulous last couple of weeks in June and most of July, she's been having a hard time in August. After failing beef, having a hard time for ten days to two weeks after we pulled the beef, and then failing blueberries last week, we decided to suspend any food trials for a while. So we didn't add in anything this week, and still things are rough. The blueberry fail seemed unclear at best, but we decided to pull them in case they were what was leading to increased hiccups and then once-daily vomiting. Given that the reaction for blueberries seemed comparatively mild, we were pretty sure she'd clear up fast. Not so much. The vomiting has continued, and if anything seemed to all of us (Sharon, Me, and Ami) to be correlated to banana consumption. So we decided after much soul searching and great grief (especially since Hallie now points to bananas, and reaches for them when she sees them, and wants to eat them) to pull bananas on Thursday. Friday, sadly, was only a little better than Monday-Thursday had been (one of those days were vomit free, inching us ever so closer to the 100 day mark...we're now standing firm at 97 days that are spew free this year). She apparently retched and heaved for no reason, and then today, did the same thing. Now, on the face of it, today's vomit was related to her crying when I left the car (she hates it when I get out of the back seat to do an errand and crying often leads to spewing) but I think the problem goes deeper than this: she had been gagging on apples at both breakfast and lunch. This concerns me A LOT: is she suddenly developing problems with the few foods (was six, now five, perhaps headed to 4) that she used to tolerate? We are having trouble ensuring that she take in a balanced diet as it is and were pretty certain that 6 foods as a long-term kind of thing wasn't such a good idea, so 4 foods are even a worse bet where sound nutrition is concerned. Is she still healing from the problems she had with beef (this seems WAY too long ago) or is the problem bananas and needs to heal from taking in so many of those? And is this a banana allergy or intolerance (like, can she handle them in small quantities but not big ones)? Cell-mediated, non-IgE allergies are really sneaky and weird. We probably won't have answers....ever....to most of these questions. And the older she gets, the more despondent I become about her growing out of this stuff. We have no idea how in the heck she keeps growing the way she does (what is in that goat milk formula, anyway?) but we are grateful that she does; now we just want to figure out what we can safely feed her so that she keeps more food in (we'd love 'all,' but will settle for 'more'). Hopefully we won't drive ourselves stark raving mad in our search to figure out this Hallie food puzzle. But if we do, I at least hope that we manage to help her in the process.

Beef Has Moved into the Failure Column

Well, after all that, it's pretty darned clear that Hallie failed her beef trial. Sharon was out with a client for dinner, and I was home giving Hallie her dinner. Lately, that's not been too traumatic, and Hallie and I were having a nice time watching Elmo & co. while she ate bananas and prunes. She was just about done with her six ounce serving when she gagged (not on anything...just gagged), coughed, and spewed. And spewed. And spewed. She was covered, her high chair was covered, the floor was covered, and it just kept coming up. This is the typical pattern with her food allergies: she has very delayed reactions to many foods, but when they come, they just keep coming.

I ran out of paper towels up here (there are lots more in the basement, but I won't leave her unattended to fetch them) so I resorted to wipes and napkins, and Hallie is generally well behaved in these situations and cooperates with shirt removal and cleanup. I got her relatively clean, gave her some drinkable Yo Goat (thank goodness that Whole Foods is carrying it again!), changed her into a clean diaper (it's rare that the outside is more soiled than the inside, but tonight was one of those nights) and gave her a bottle. She clearly felt better, drank some bottle for me as I cleaned up as much as I could up here, and then went upstairs for her bath. Sharon came home mid-bath (Hallie was thrilled to see her) and got Hallie settled down with more goat milk formula. We managed to get about 12 ounces of formula into the kiddo, so she's not in any danger of dehydration.

Meanwhile, my excellent mommy friends over at the Preemie Blog Moms were very supportive about my venting. A couple of them independently raised the question of whether Hallie has Eosinophilic Esophagitis and not just FPIES. This is a great question, and actually one that came up yesterday during our Pulmonology appointment. Liz asked whether Hallie might have EE, at which point I noted that her scope last August came up clean. Liz said that her sense is that this might be inconclusive because Hallie's gut might not yet have been mature enough to show Eosinophils (pronounces EE-OH-SIN-OH-FILS---I have trouble saying this word, too!). The vomiting plus dysphagia (inability to or difficulty swallowing) is a decent indicator that tis is what we may be facing. The only thing that suggests otherwise is Hallie's nearly-miraculous capacity to put on weight in the face of all of this. She has only really lost weight twice in her life, and that was back in April 2007 when we ran out of breast milk and January 2008 when we stopped adding all of the extra stuff to her goat milk (which also was, probably not coincidentally, the only two week period when she stopped vomiting entirely....I suspect that stripping away the Enfamil AR and possibly the Karo Syrup was responsible for her complete symptomatic resolution at that point).

So, given all of this, I quickly shot off an email to our team---our ped, our allergist, our GI, and Liz. I'm not sure what this will mean in terms of testing, but it will probably mean little in terms of treatment (a few hours of research on POFAK and other websites suggests this). It's clear that the safe foods are safe, and we probably risk very little trying new foods, except that we would need to avoid the top 8 (milk, soy, eggs, tree nuts, peanuts, fish, shellfish, and wheat). We already know that she is not okay on milk, soy, eggs, and wheat, and we were avoiding peanuts and shellfish as well. The question is whether we can get another protein on board, and chicken/turkey/poultry were big no-nos for FPIES. Anyway, I suspect we may just try to add more fruit and rely on our nanny goat formula until who knows when. The big kicker for EE, though, is that there is a lot less of a chance that Hallie will outgrow things, and that would stink.

The upshot is that we're still on six foods and we still have a mystery on our hands and I still need to continue my training and research in the medical/pediatric field.

We did get one more vomit free day out of this week, though, so that makes it 86 for the year. But given tonight's happenings, I'm once more in that glass-is-half-full kind of place. I'm really tired of research, but more importantly, I'm real tired of Hallie having to experience so much pain. It seems so unfair that she has been through so much, and so amazing that, despite it all, she is such a sweet, good-natured, and wonderful little kid. Our OT, Jenine, who was here for the first time in a three weeks was utterly impressed by Hallie's growth and development over this period. Jenine noted that Hallie still has some low tone issues, but her stance (more close-legged) is much more stable and her speech development has been utterly phenomenal. It was nice to hear that a few hours ago, and is very good for me to think about this, right now, as I ponder the future and the things/conditions that Hallie has yet to face.

A Remembrance of Things (that you wish were in the) Past

So this evening, Hallie had another one of her famous cough-cough-bottle-vomit episodes. We were a bit out of practice so Sharon didn't have the famous bucket nearby (it's been a long time since one of these events) and consequently the mess (which included dinner) was fairly spectacular. I was also unprepared so I needed to call in the paper towel reinforcements from the basement (haven't been using many of these lately, so I didn't have my typical stash of two extra rolls upstairs). Hallie, of course, was asleep when all of this happened, but woke up from the coughing and vomiting and then had to be put back to bed.

This comes on the heels of her swallowing some water from the wading pool this afternoon and vomiting as a result of that. She still cannot handle thin liquids (we still thicken pretty much everything to a consistency that's between nectar and honey; she does take little sips of unthickened juice, but not much and not often). Clearly she isn't ready for thins, yet, but my sense (and my sense about things tends to be pretty good) is that this episode tonight was not about the pool water but something else.

Possible culprits?

1. Beef, after all (especially since I jinxed us with the last post).
2. Hot dogs, but not beef in particular. The ones we use are gluten and casein free, and the only ingredients listed are celery juice, paprika, onion and garlic powder, lactic acid from beets, and salt and pepper. Still, that does leave an awful lot beside beef.
3. The Gerber plums and apples she ate at dinner. A long shot, but Gerber is known for more cross-contamination problems than is Beech Nut (which she's been eating quite happily without incident and whose food contains some iron, as opposed to Earth's Best)

Of course I responded by googling and searching the POFAK site frantically and don't have any conclusive answers. I think we just have to wait and see. If the vomiting keeps up, we will know she is responding to something in the hot dogs (beef or something else). That's the typical pattern with Hallie. If it is a food allergy or intolerance, she's taken longer than average to respond (she responds very quickly to rice and other grains and milk but took a few days to respond to soy, for example). But a delay of four days is not unheard of, especially given the very small quantities of hot dogs she's eating (never more than a third to half a hot dog at any sitting, and more typically that's been over the course of a day). Today she only had a few bites of hot dog and mostly safe pureed foods so that makes the hot dogs a less likely culprit, but these food allergy things are so capricious and weird that it can make your head spin.

Anyway, that all means that we're still at 85 vomit free days and that we had 6 vomit free days this week. I was so hoping for seven, but that was not to be.

It's way late right now and I've just finished cleaning up for the cleaning folks coming tomorrow (let's hope that they do a better job than the ones we used to have come in twice a month) and making the kiddo's bottles. I am hoping that Hallie sleeps through the night---between the no naps (and no bottle) in the car home and the major vomit after eating a decent dinner and drinking over 6 ounces of her bottle, she's down in terms of quantity consumed today. When Sharon was finally able to settle Hallie down around 11:30, the girl only drank about 4.5 ounces of her milk, so she's had maybe a total of 10 ounces of milk today and perhaps as much as 600 calories, but certainly no more than that. I deeply hope that she sleeps through the night and that tomorrow ends up being a better day.

To end on a more upbeat note: it turns out that Hallie can not only identify most (over 20 for sure) letters of the alphabet (only upper case) when they are written/printed, but that she can identify all letters of the alphabet until "P" when they are signed to her. She was refusing to nap on the way home from our meetup with Eliza Grace and her mom in Princeton, so I was amusing her in the back seat of the car. I started to sign to see whether she could get my alphabet signs, and amazingly enough she did. She got bored at "P" so she may know Q through Z as well, but just suffers from a raging case of a toddler's limited attention span.

Where's the Beef?

So we're doing a beef challenge this week with Hallie. It would be excellent to have an additional protein source (her only protein source thus far being goat milk products; she's great with these, but her diet doesn't afford her a lot of variety). She doesn't seem to like the taste of those little jars of beech nut baby beef terribly much (can you blame her?) but has done okay on the two ounces of it that she's had so far (one yesterday and the other today). So, after a bit of research on Applegate Farms (an organic brand carried by Whole Foods) that yielded information about a very good set of policies concerning their lack of use of gluten, their dedicated practices to avoid cross contamination with dairy products, and the like, I decided to pick up a package of their organic hot dogs tonight and try them out on Hallie. Worst comes to worst, I figured, we'd actually eat these (unlike the many jars of rejected baby food that we have stacked in our cabinet). We do like our hot dogs around here (pretty occasionally, but still) and I insist on organic ones, and since I do most of the shopping, Sharon has to put up with these (which actually are quite tasty) in lieu of her preferred Oscar Mayer ones (side note: Hallie's pulmonologist *is* actually Oscar Mayer...grandson, I think, of the lunch meat-hot dog guy, and a fabulous doctor all around. I'm not sure if we'll see him or someone else on Monday for our 6 month checkup that is about 3 months late, but we are looking forward to hanging out with the pulmo fellow, Liz, whom we actually miss. She loves Hallie, and the feeling is quite mutual. I am sure that Liz will be surprised at how big Hallie's gotten).

Anyway, back to the topic at hand: I brought them home, boiled up about a third of one, skinned it, let it cool, and chunked it up pretty small. We weren't sure what to expect because Hallie gave me the mother of all food averse I'm-not-eating-no-way-no-how-you-cannot-make-me-so-there tantrums last night. So much so that I gave up (trying not to show my exasperation) and handed over the feeding reins to Sharon, who managed somehow to get four 'sticks' of goat mozarella, two slices of banana cut up into sixths, and a few sticks of pear into the kid over the next hour and a half. It's very clear to us that our toddler knows how to chew and can chew and swallow safe foods, but that she is as stubborn as a mule and that food is her controlling mechanism of desire (or lack thereof), probably because of her long history of hating it and it hurting her. In any event, tonight she was pretty good and, once she deemed the hotdog both safe and tasty, chowed it down pretty nicely. A couple of chunks did end up in her high chair, but this appeared to be more related to toddler lack of eating coordination than to an effort to hide and bury them and fool us on her part. (It is pretty interesting that she inspects her food the way she does. Her initial response to chunks of food that do not appear to be french fries or potato sticks is to say 'all done' and swat at and clear them. But she stopped doing this with the hot dogs once she actually tasted their yummy salty goodness and realized that this was indeed what the famous pigeon was talking about when he found a hot dog and deemed it a taste sensation and splendor in a bun. Just hold the bun for Hallie, unless of course we can figure out how to make a bun from potato, goat milk, pears, apples, bananas and prunes or some subset thereof).

We'll see if Hallie's pro-hot dog stance continues tomorrow and how she fares with beef more generally. She usually begins reacting to a food to which she turns out to be non IgE allergic by the third or fourth day of a trial, and tomorrow is day three. We certainly are hopeful that she is not one of those rare FPIES kids who is so allergic to cow milk that they are also allergic to the cow that produces it.

In related news: today is day 82 of the year that is vomit free, and the only day in the past 10 that she did vomit was Sunday, when she hit her head on the wooden frame of the futon. This is spectacular (not the head hitting part) and gives us great hope.

Her language is also progressing nicely. Tonight she brought her Baby's First Colors book over to Sharon and both signed and said (quite clearly, to us, at least) "colors." She says "upstairs" when she wants to go up, and "outside" and a bunch of other multisyllabic words. And she is internalizing the need to be polite. Now she almost always says and signs "Please" (she says "Pleasy") if she wants something and without fail says and signs "thank you", which sounds much closer to how it is supposed to sound---it used to sound like 't---oo" and now sounds like "tank-ooo". She has also been saying "hello" quite clearly into phones---both real and perceived---and yesterday evening had her first real phone conversation with Grammy. She said "Hello", "Grammy", "Doggie" and "Bye Bye" pretty much in that order. Grammy was quite thrilled. She is still probably only 25% comprehensible (maybe a bit less) to others, but this is quite impressive progress given that Hallie hardly babbled at all until November/December, had nary a word back in January, and only about 40 words or so at the beginning of June. Now she has so many words or word attempts that we've kind of lost count.

Hallie has also refined her sense of style. I call the first picture "The girl with the go-go boots" (her favorite item of clothing). Note that she is only wearing a diaper since she has become quite adept at removing her pants.



The second picture is Hallie's updated Russian peasant girl look. She insisted on undoing one of the straps of her Elmo/Cookie overalls and walked around with them that way most of the day. The rest of the day she decided that overalls were too much to wear altogether so she stripped them off and just hung out in her t-shirt.



I have some pics on the camera of Hallie's impressive attempt tonight at body art (using washable markers; she's mastered taking off and replacing the flip top on her new ones, but still insists on using her teeth instead of her hands...does this count as fine motor skills?) but I am too tired and lazy to upload them right now, so these will have to wait until my next post.