Not my age (sadly enough, it's over a decade since my 30th birthday) but the number of gestational weeks that Sharon and the as-yet-unnamed-one (right now we're thinking "Jane Doe Eble-Schrader". That would be pretty distinctive, no?) reached on Saturday.
Anything in the 30s is tremendous. And along with that advanced gestational age comes some new experiences for Sharon. Like fetal hiccups. She never felt those with Hallie and Olivia. Of course, Hallie's had more than her fair share of reflux hiccups since being on the outside. So we're hoping that hiccups in utero will translate to LACK of hiccups ex utero. Maybe we'll get lucky on this front.
Sharon is also surprised, elated, and somewhat weirded out by the baby's constant movement. She never got to experience this with the twins, and finds it kind of funny to be sitting still at her desk, working, or lying in bed trying to sleep and getting battered from the inside out. We're thinking the kid has already taken a few karate lessons and would not be surprised to find that, like Hallie in her infant days, she's a bit of a thumper (Hallie loved to lift her legs high in the air and then thump them on the bed, floor, or the maternal figure repeatedly. Very charming and quite a good strength builder).
On other fronts, it seems like we're dealing not only with renewed GI symptoms on Hallie's part, but also a cold (I'd guess the DX would be bronchiolitis). She's coughing up a storm, particularly at night---practically all night long. We've got the humidifier with eucalyptus/camphor/menthol stuff in it running at night now, and one of those plug in vaporizers with more eucalyptus/menthol stuff, and are trying to take it easy on food while making sure the kid has enough fluids. As a result, she's lost yet more weight (she probably gained last week, and lost that, and perhaps more over the past couple of days). Wednesday's weight check (pre big family conference) may be a bit traumatic. The daily vomiting continues, but it seems more related to snarfliness than anything else. So we are stuck at 156 vomit-free days this year, and honestly, I'll settle for an even 160 this year. At least we did break 150. That is something, particularly in comparison to last year's measly 16 days.
But we do have some more stuff to talk about at the family meeting and some new avenues to pursue. We'll keep you guys posted, and are trying not to get our hopes up too high that we'll actually figure out what's going on with Hallie because we've been-there-done-that before only to find ourselves back in the same old cycle.
How Old is Hallie?
How Old is Lea?
Sunday, November 30, 2008
Thursday, November 27, 2008
Catching up and Giving Thanks
Well, it's a darned good thing that I didn't jump on the NaBloPoMo bandwagon (this is a pact you make with the cybergods or some other web-based deity to post a post every day for a month. I am not sure what happens if you don't--perhaps Charlton Heston returns to part your computer with one stern raise of a hand and all of your previous posts drown in a sea of red jello?). Anyway, it's been quite a long couple of weeks around here. Between my conference (finishing the paper, shortening the paper, delivering the paper, explaining to all those in attendance who knew me back in the days why I haven't given any other papers or visited an archive or researched things unrelated to microprematurity, allergies, and reflux in the past three years) and the onset of VomitFest 2008 (TM), we've been busy. To say the least.
Indeed, as it turns out, even too busy to take pictures of our kid, which is too bad since our kid, through it all, remains exceedingly cute. (As one of my fellow micropreemie moms put it to me on the phone just now, our kids may vomit more than average but they really are lookers. I suppose that this is a good thing because, when one clears out an entire Gymboree after a particularly bad incident, at least the other parents, after screeching "Ewwww gross," can say something like: "but it does look like that little girl is probably going to grow up to be a supermodel."
Anyway, I digress. We do have a few cute shots of Hallie. The first couple are from Charlie's fire-house birthday party (which was super fun). Hallie had a great time sitting on the front of the fire truck ringing the bell (loudly in my ear).
+bell.JPG)
She would have been content to hang out there for the whole party, but we convinced her to let the other kids have a turn. She went exploring the inside of the fire truck from every angle imaginable, but sadly the sun's reflection in the windshield of the truck bouncing off the lens of our camera meant that none of the photos I took of that turned out terribly well.
Hallie did groove on the firehats that Sara and Alex got for all the kids. Here she's wearing it at the party:
It continues to be one of her favorite head gear items at home. Indeed, she would wear only that if we let her (we do not: we frown upon Hallie taking off her diaper on her own. Which of course does not prevent her from doing so. She is quite the expert undresser these days):
To be fair, though, she is also getting pretty good at getting clothing on. She's begun to try to put on her own socks and gets the idea behind it but doesn't quite know how to bunch them up and open them sufficiently to get her toes jammed into them (she does, however, like to count her toes as we jam them into her little socks). And she's been putting her arms into the sleeves of her sweaters and pajamas, just not always the correct arm into the matching sleeve, so the results are a bit funny looking. And she has been putting her own shoes on for quite some time now, and is getting very good at putting on *our* shoes and actually managing to walk upright in them (her gait, though, looks sort of Frankensteinian).
But this is one of the funniest things she's donned in a long time:
Yes, that is a swim-diaper-as-a-do-rag and, yes, that is her bathtub as a boat. What a silly little girl!
Anyway, we are very grateful for all the silliness that Hallie brings into our lives. She's a very funny kid who very much enjoys her life, and loves teasing us and loving us. And we love that we have the opportunity to love her as fiercely as we do. Of course, there are a bunch of things we would like to have the power to change (beginning with the circumstances of her and Olivia's birth and ending most recently with the inexplicable upsurge in gurgly refluxing and food intolerance and middle-of-the-night coughing and vomiting), but we are grateful for what we have, will do all in our power to make things as easy for Hallie as possible and to get to the bottom of what's going on with her, and to make her home and every other space that she negotiates as safe and stimulating as possible.
And we are grateful that the Great Expectation is staying put where she is (as of the last OB appointment this past Monday, no signs of cervical dilation or softening) and are hoping that she avoids some of the problems that plague Hallie's GI tract just by virtue of NOT being a micropreemie.
And, finally, we are thankful for our family and friends, both those in real life and those on this journey with us in a virtual manner. We hope that everyone has a safe and sound holiday, wherever you are (and regardless of whether you celebrate Thanksgiving)!
Saturday, November 15, 2008
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).
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).
Thursday, November 13, 2008
Tagged!
Sarah,Sydney and Levi's mom tagged me a couple of days ago, and slacker/overworked and undeslept person that I am right now, I haven't managed to get around to doing anything about it (or posting anything else, for that matter!)
Here's the parameters, which are really quite simple (unless you've recently had to rebuild your desktop, but even so, it's not too bad): You go to your picture folder on your hard drive, open the sixth folder on there and then upload the 6th picture in that folder. Here's mine!
Amazing how little Hallie was back then. This photo was taken when she was about 7.5 months old/3.5 months corrected, in January of 2007. We thought she was huge, but indeed, as it turns out, hitting 10 lbs is something that full-termers do at 4 or 5 weeks of age, not at close to 4 months (who knew they could get so big so quickly?).
Other news: Beef ended up being a fail. By Saturday the gagging and vomiting once more became a daily event, and Hallie had three pretty bad days in a row where her tummy hurt, she was gassy, and her sleeping was way off. Things got a bit better on Tuesday, but she is still refluxing like crazy and she remains "off" in terms of her mood and her sleep. I have emails out to GI and am trying to pick someone's brain about whether it might not be worth trying her on digestive enzymes (if anyone knows anything, please let me know!). Meanwhile, we feel pretty dejected and almost resigned to keeping her diet restricted to the five foods she can eat safely and never try anything new again. At least we finally did make it to, and then exceed 150 vomit free days this year. Total tally so far is 151, but let's just say that yesterday and the day before that's success could have just as easily been failures since Hallie was clearly in abdominal pain and was trying to make herself vomit to get some relief. It's just that Sharon and I are hawks and caught her in time.
Otherwise: baby-to-be is still doing great. Sharon is at 27 weeks 5 days and going strong. We're still not any closer to finding a name though. I suspect we'll be spending the first three or four days after this one's arrival working things out. We've heard some lovely ones, though, so keep them coming!
Anyway, I'm tagging Sarah,Shoshanna's mom and Laura, Daniel (and the rest of the Big Top's mom and lovely Hazel's
grandmom...
Here's the parameters, which are really quite simple (unless you've recently had to rebuild your desktop, but even so, it's not too bad): You go to your picture folder on your hard drive, open the sixth folder on there and then upload the 6th picture in that folder. Here's mine!
Amazing how little Hallie was back then. This photo was taken when she was about 7.5 months old/3.5 months corrected, in January of 2007. We thought she was huge, but indeed, as it turns out, hitting 10 lbs is something that full-termers do at 4 or 5 weeks of age, not at close to 4 months (who knew they could get so big so quickly?).
Other news: Beef ended up being a fail. By Saturday the gagging and vomiting once more became a daily event, and Hallie had three pretty bad days in a row where her tummy hurt, she was gassy, and her sleeping was way off. Things got a bit better on Tuesday, but she is still refluxing like crazy and she remains "off" in terms of her mood and her sleep. I have emails out to GI and am trying to pick someone's brain about whether it might not be worth trying her on digestive enzymes (if anyone knows anything, please let me know!). Meanwhile, we feel pretty dejected and almost resigned to keeping her diet restricted to the five foods she can eat safely and never try anything new again. At least we finally did make it to, and then exceed 150 vomit free days this year. Total tally so far is 151, but let's just say that yesterday and the day before that's success could have just as easily been failures since Hallie was clearly in abdominal pain and was trying to make herself vomit to get some relief. It's just that Sharon and I are hawks and caught her in time.
Otherwise: baby-to-be is still doing great. Sharon is at 27 weeks 5 days and going strong. We're still not any closer to finding a name though. I suspect we'll be spending the first three or four days after this one's arrival working things out. We've heard some lovely ones, though, so keep them coming!
Anyway, I'm tagging Sarah,Shoshanna's mom and Laura, Daniel (and the rest of the Big Top's mom and lovely Hazel's
grandmom...
Saturday, November 8, 2008
Third Trimester, Baby!
Well we're off into uncharted territories...today marks the beginning of trimester number 3 for the as-yet-unnamed-one. (We promise to let you know when...and if...we ever settle on a name). The baby is extremely active and I'm now able to feel her kick quite frequently (she pummels Sharon pretty much constantly, especially if Sharon is trying to get any work done at her desk or sleep or something nonessential like that). Last they checked (week 25), the baby was breech, but it was way too soon to be concerned about that (WE HOPE!) and she might even have flipped by now (without one of those home ultrasound machines like Tom Cru.ise got installed, it's really a bit hard to tell). I'm assuming they will check on this at some point over the next few OB visits (next one: 29 weeks).
Meanwhile, Hallie seems to have passed her roast beef test. We're five days into it without any symptoms and so we're thinking it was the bananas that messed things up last time around (and perhaps the other additives in the relatively but not absolutely additive-free organic hot dogs we tried feeding her). This time, we're using the one safe brand of roast beef I've identified (the machines used in production, slicing, and packaging all have to be safe, and not just the beef itself). It's a shame she manages to eat so little (average serving: anywhere between an eight and a quarter of a slice...like 10 to 20 calories, at best). So we obviously cannot take her off of the baby food we shovel into her just yet, but maybe someday. And her chew looks good, when she's feeling cooperative. (Not like yesterday during OT when Hallie wriggled, swatted, ducked, and even hugged the sliver of roast beef I was trying to get her to eat, all in an effort to keep from putting it into her mouth). Normally she'll eat fairly willingly (especially if you bribe her with french fries or potato sticks but only after she finishes the tiny portion of roast beef). Anyway, it seems like enough to rule out a major allergy/intolerance to beef and hopefully we'll be able to beef up her portions down the road.
Yesterday was day 149 of vomit free life around here, and if we keep going at a similar pace, I don't see why we won't make 175 days this year. Woo hoo.
OK, back to work now. I promise to try to take and upload pictures soon, but meanwhile am under a pretty major deadline crunch and cannot even afford the time to post, really.
Meanwhile, Hallie seems to have passed her roast beef test. We're five days into it without any symptoms and so we're thinking it was the bananas that messed things up last time around (and perhaps the other additives in the relatively but not absolutely additive-free organic hot dogs we tried feeding her). This time, we're using the one safe brand of roast beef I've identified (the machines used in production, slicing, and packaging all have to be safe, and not just the beef itself). It's a shame she manages to eat so little (average serving: anywhere between an eight and a quarter of a slice...like 10 to 20 calories, at best). So we obviously cannot take her off of the baby food we shovel into her just yet, but maybe someday. And her chew looks good, when she's feeling cooperative. (Not like yesterday during OT when Hallie wriggled, swatted, ducked, and even hugged the sliver of roast beef I was trying to get her to eat, all in an effort to keep from putting it into her mouth). Normally she'll eat fairly willingly (especially if you bribe her with french fries or potato sticks but only after she finishes the tiny portion of roast beef). Anyway, it seems like enough to rule out a major allergy/intolerance to beef and hopefully we'll be able to beef up her portions down the road.
Yesterday was day 149 of vomit free life around here, and if we keep going at a similar pace, I don't see why we won't make 175 days this year. Woo hoo.
OK, back to work now. I promise to try to take and upload pictures soon, but meanwhile am under a pretty major deadline crunch and cannot even afford the time to post, really.
Wednesday, November 5, 2008
Hope
I am sitting on our couch listening to the 44th President of the United States of America and I am feeling very hopeful. I am hopeful for our children, for the possibilities of our great nation, and for the potential for all of us to come together. I am hopeful that our better instincts will prevail over our baser ones and that this nation can heal.
And, because I cannot even imagine that my words can rival these, allow me to quote the articulate words of Barack Obama:
"If there is anyone out there who still doubts that America is a place where all things are possible; who still wonders if the dream of our founders is alive in our time; who still questions the power of our democracy, tonight is your answer.
It’s the answer told by lines that stretched around schools and churches in numbers this nation has never seen; by people who waited three hours and four hours, many for the very first time in their lives, because they believed that this time must be different; that their voice could be that difference.
It’s the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Latino, Asian, Native American, gay, straight, disabled and not disabled – Americans who sent a message to the world that we have never been a collection of Red States and Blue States: we are, and always will be, the United States of America."
Monday, November 3, 2008
Hallie's Third Hallowe'en
Hallie had a very nice Hallowe'en this year and did her first real trick-or-treating.
Hallowe'en got started with Hallie in full Phillies regalia but, after hearing about how fans were already lining up along Broad Street in throngs at 7 am for the World Series parade that was only going to get underway at noon, I decided that we'd skip this bit of our day. Hallie has no real knowledge yet of baseball (sigh) and is not one to do super well in crowds (she gets sensory overload from them, as do I). So we headed to the playground for a super long, super fun session. For the first time ever, I managed to avert a meltdown on Hallie's part when both of the toddler swings were taken. I'm not sure how I convinced her it was okay to slide first, but she went along with my plan and did some sliding until a swing was free. She then swung, played ball, drew all over the place with sidewalk chalk, picked a couple of flowers (one of Hallie's current obsessions), ran back and forth across the bridge, played a bit with Sophia (our neighbor) and a bit more with Sophia's mom, managed not to melt down again when she had to give back Sophia's Elmo, and stomped through the leaf pile.
All of this proved exhausting, so after a quick bite of lunch that followed her OT session, Hallie went down for a two and a half hour nap and woke up just in time to get dressed in her butterfly costume and head out to a different park to meet up with Taylor and her moms, Renee and Kim.
We caught the tail end of the doggie costume parade and Hallie played hard among the huge crowd of costumed kids in the playground. Again we skirted a couple of meltdowns which almost happened when swings were taken, when Hallie had to wait for other kids to finish their sliding so that she could slide down, and when I narrowly missed hitting a little puppy (boy) with Hallie's swing after said puppy-boy darted in our path out of nowhere.
Sharon met up with us at the park and the three of us headed home so that trick-or-treating could begin in earnest. We tried taking a few photos of our flitty little butterfly but none of them were great. These are the best of the bunch:
Then it was off to collect some candy. This is a bit bittersweet, since, of course, given Hallie's allergy and eating issues, we have yet to find a candy that is safe for her (she tried, and like the taste at first, of hershey bars last year, but after nibbling a bit on one, she began to vomit profusely. The only other kind of candy she has eaten is cotton candy and this may end up being an option for her down the road). We'll be eating her stash, unfortunately (though I suspect we'll have a bit of help from Ami). Anyway, Hallie really enjoyed grabbing candies and saying "thank you" (she can't quite get trick-or-treat out yet). And she got into the spirit of the holiday by doing a few crafts on this really great block nearby where everyone hangs out together (most of the adults are in costume, too) and many of the families have set up tables for the kids to make decorations of various sorts. The highlight of the evening for Hallie was dunking her arms, and at one point nearly her entire torso, into one of those water play tables that had been set up earlier for a game of bobbing for apples.
We left shortly thereafter because, though it was warm out, our kiddo was soaked through both of her sweaters and her two shirts and there was still a bit of a chill in the air. We got her changed, went over to Mark and Vanessa's for pizza, and Hallie had yet more fun playing with Karina.
It's no wonder, with all of that activity, that she collapsed at around 10:00pm and stayed asleep until 11:00am on Saturday. We took it easy this weekend (which also allowed me to continue working on my conference paper, which is about 75% done now) and spent today adjusting to Daylight Savings Time.
Which reminds me that I need to get to sleep pronto since Hallie's likely to wake up a lot earlier than I'd like to!
But just an update on the vomiting: we're now at 144 days of vomit free existence (today isn't one of them since a super tired Hallie accidentally banged her head on the wall after her bath during her nightly ritual of trying to avoid diapering and getting into her jammies). And Sharon is now at 26 weeks 2 days and going strong. Tomorrow she gets to experience the joys of a gestational diabetes test for the first time. I am sure she can't wait (it would be better if they'd let you eat a lot of that leftover hallowe'en candy rather than drink that yucky glucose drink, but I don't suppose they'll go along with this shift in protocol).
Hallowe'en got started with Hallie in full Phillies regalia but, after hearing about how fans were already lining up along Broad Street in throngs at 7 am for the World Series parade that was only going to get underway at noon, I decided that we'd skip this bit of our day. Hallie has no real knowledge yet of baseball (sigh) and is not one to do super well in crowds (she gets sensory overload from them, as do I). So we headed to the playground for a super long, super fun session. For the first time ever, I managed to avert a meltdown on Hallie's part when both of the toddler swings were taken. I'm not sure how I convinced her it was okay to slide first, but she went along with my plan and did some sliding until a swing was free. She then swung, played ball, drew all over the place with sidewalk chalk, picked a couple of flowers (one of Hallie's current obsessions), ran back and forth across the bridge, played a bit with Sophia (our neighbor) and a bit more with Sophia's mom, managed not to melt down again when she had to give back Sophia's Elmo, and stomped through the leaf pile.
All of this proved exhausting, so after a quick bite of lunch that followed her OT session, Hallie went down for a two and a half hour nap and woke up just in time to get dressed in her butterfly costume and head out to a different park to meet up with Taylor and her moms, Renee and Kim.
We caught the tail end of the doggie costume parade and Hallie played hard among the huge crowd of costumed kids in the playground. Again we skirted a couple of meltdowns which almost happened when swings were taken, when Hallie had to wait for other kids to finish their sliding so that she could slide down, and when I narrowly missed hitting a little puppy (boy) with Hallie's swing after said puppy-boy darted in our path out of nowhere.
Sharon met up with us at the park and the three of us headed home so that trick-or-treating could begin in earnest. We tried taking a few photos of our flitty little butterfly but none of them were great. These are the best of the bunch:
Then it was off to collect some candy. This is a bit bittersweet, since, of course, given Hallie's allergy and eating issues, we have yet to find a candy that is safe for her (she tried, and like the taste at first, of hershey bars last year, but after nibbling a bit on one, she began to vomit profusely. The only other kind of candy she has eaten is cotton candy and this may end up being an option for her down the road). We'll be eating her stash, unfortunately (though I suspect we'll have a bit of help from Ami). Anyway, Hallie really enjoyed grabbing candies and saying "thank you" (she can't quite get trick-or-treat out yet). And she got into the spirit of the holiday by doing a few crafts on this really great block nearby where everyone hangs out together (most of the adults are in costume, too) and many of the families have set up tables for the kids to make decorations of various sorts. The highlight of the evening for Hallie was dunking her arms, and at one point nearly her entire torso, into one of those water play tables that had been set up earlier for a game of bobbing for apples.
We left shortly thereafter because, though it was warm out, our kiddo was soaked through both of her sweaters and her two shirts and there was still a bit of a chill in the air. We got her changed, went over to Mark and Vanessa's for pizza, and Hallie had yet more fun playing with Karina.
It's no wonder, with all of that activity, that she collapsed at around 10:00pm and stayed asleep until 11:00am on Saturday. We took it easy this weekend (which also allowed me to continue working on my conference paper, which is about 75% done now) and spent today adjusting to Daylight Savings Time.
Which reminds me that I need to get to sleep pronto since Hallie's likely to wake up a lot earlier than I'd like to!
But just an update on the vomiting: we're now at 144 days of vomit free existence (today isn't one of them since a super tired Hallie accidentally banged her head on the wall after her bath during her nightly ritual of trying to avoid diapering and getting into her jammies). And Sharon is now at 26 weeks 2 days and going strong. Tomorrow she gets to experience the joys of a gestational diabetes test for the first time. I am sure she can't wait (it would be better if they'd let you eat a lot of that leftover hallowe'en candy rather than drink that yucky glucose drink, but I don't suppose they'll go along with this shift in protocol).
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