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).

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

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

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

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

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

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

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

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

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

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

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

M