How Old is Hallie?

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Tuesday, December 30, 2008

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!

Saturday, December 27, 2008

34 Weeks, and a Lovely Holiday to Boot

Just a brief update before I go make some more goat milk formula.

We had a truly lovely few days around these here parts. First, we had a great Christmas dinner at our neighbors' house. Barbara and Chris had picked up a package for us (well, for Hallie) on Wednesday and I stopped by their place on the way home to retrieve it. When Barbara heard that we were laying low and staying home for Christmas rather than going to Aunt Laura's and Uncle Bryan's to be with the family, she asked us to have dinner with them. And so we did. Hallie had a blast playing with their engaging three year old, Adam, and his two older brothers Conor and Benjamin, and we had an excellent time (and fabulous dinner) with Barbara, Chris, and her parents.

Our Friday plans with Jake and Gina, alas, fell through because Jake came down with a cold (which is a horrible thing to get on Christmas, especially when one's mommy has taken the whole week off and has planned lots of fun activities), but we're rescheduling for January 2nd, and hopefully Jake will be better by then. Nevertheless, Hallie had a great day with us and was in a terrific mood. She enjoyed playing with her new toys (a wonderful feeding set and high chair from Mark, Vanessa, Karina and Ariana and this highly engaging set of eggs and her dress up Disney gear from Jake and Gina, as well as tumbling on her mat and reading some of her new books).

Then, today, her cousins, Uncle Bryan and Aunt Laura, and Grammy came down to celebrate the penultimate night of Chanukah with us. We had yummy sandwiches from Sarcone's Deli on 9th Street in the Italian Market and equally yummy cookies from Isgros, as well as other assorted local delicious snacks. She loves all of her new toys (among other things, a doctor's pretend play set; an easel and accompanying art supplies; a Little People Farm; and a toddler karaoke set) but enjoyed the company of her cousins even more. She had a blast playing when they arrived and then tuckered herself out and fell asleep on Uncle Bryan's chest; after a brief snooze she was up and running again and continued to play until she collapsed with happy exhaustion at around nine pm.

Hallie has also been feeling incredibly well lately and this shows in her mood. We're not sure what happened, but her tummy is emptying nicely right now, and consequently she's eating and drinking really well (including a few stolen sips of Diet Coke and Diet Birch Beer, which she seems to really like a lot...of course, since it has no calories, these would be drinks of choice for her!). But whatever is going on, we're really enjoying it and we're now at 171 days of spew free existence this year. We're hoping this is just the start of a trend, but whatever it is, it's a great holiday present for the whole family, whose existence has become much less stressful this week relative to the past few months.

And, if this were not enough, Sharon is now 34 weeks pregnant and is still feeling great. The baby occasionally jabs her in an uncomfortable place (a nerve, perhaps) but otherwise seems quite content to stay inside where she should be. Just six weeks to go, more or less, and that seems a tad bit surreal to us right now.

I did take some pictures today but have yet to upload them, so stay tuned for a picture update later on this week!

Tuesday, December 23, 2008

And a Happy Holiday to All!

This past weekend, Hallie paid her first ever visit to Santa. Sharon has been a bit worried that Hallie will grow up an un-believer (that is, unfamiliar with the iconic Mr. Claus) due to our well-founded concern with germs and such (and, let's face it, there is probably no place more replete with germs at holiday season than the ample red-clad lap of Old St. Nick). That's why we refrained from introducing Hallie to the cheerful man himself (or at least to one of his many impersonators) during her first two Holiday seasons. But it seemed time to have Hallie make the great wish-granter's acquaintance (even though Hallie has yet to grasp the idea that you are supposed to let Santa know that you've been a good girl all year long and deserving of that special something as a result of this excellent behavior).

So it was off to Macy*s that we were headed on Sunday...but not before a nice trim-up by Grammy.

Oddly enough, I never knew that Sharon's mom, Jan, used to cut hair for a living. Had I known that, we'd have enlisted her support in mullet-removal a long time ago.

Sharon's mom gave Hallie a super, and super professional haircut:

The final results are nothing short of great and upcoming photos will be featuring our well-coiffed girl in all of her glory. (Side note: the haircut makes Hallie look an awful lot like Aunt Laura--which we see as a very good thing. We often joke that Aunt Laura has strong genes: all four of her kids look a lot like her, and not like their dads, and now it turns out that Hallie also looks a lot like Aunt Laura and not particularly like Aunt Sharon or Donor 1876).

Anyway, I digress. On Sunday, after nap time, we bundled our girl, who was dressed in a festive red sweater and black velvet pants and who thus passed as easily for a boy as a girl (but then again, even when she's wearing a frilly pink dress on top of pink leggings passers-by often tell us that we have ourselves one handsome young man there...we're not sure why it is that hair length seems to determine gender evaluation, but whatever). We parked in the massively expensive lot at Macy*s Center City (formerly the flagship store of Wanamaker's) and headed up to the 3rd floor, which was home of Dicken's Village.

The line was very, very long but moved quickly. I attribute this at least in part to the fact that parents were frightened off by the village itself, which I deemed to be downright spooky. Here are a few images that convey the mood of the iconic Dickens' tale:

Hallie took the whole thing in stride, but one can easily see how, by the time one's child arrived at the end of the long journey through the re-enactment of Scrooge's encounters with the Ghosts of Christmases past, present, and future and his consequent growing understanding of his evolution into the very very nasty man he'd become, one's child would be scared silly and none-too-photogenic on Santa's lap as a result of this.

At the end of the hair-raising journey, we spilled out into a much more friendly space:

Then came the great Santa encounter. Hallie was appropriately apprehensive at the prospect of letting go of our hands (lately she insists that she hold both of our hands when out walking; this is very sweet). We convinced her it was okay to get on Santa's lap and that we'd be standing right by her.

She spent just enough time perched on his lap for the Macy*s folks to take this picture, which of course we had to purchase in order to commemorate the momentous event:

All in all, it wasn't too bad: Hallie did not melt down and the event did not turn into a fiasco (those of you who have witnessed--or can imagine the messy consequences of the hysterical tears and crying fits that result from Hallie being afraid---probably can conjure up how this whole thing might have's a hint: we probably would have been responsible for a pretty hefty dry cleaning bill for Santa's get-up).

And, speaking of get-ups, here's the latest fashion forward look from Hallie. Her brother, Jake, and his lovely mom, Gina, got Hallie some marvelous Disney princess dress-up clothes for Christmas, and Hallie is especially enthusiastic, of course, about the wide variety of shoes that accompany the princesses' outfits. Here she is modeling one pair, along with the fire chief hat that is one of her most favorite items of head-gear.

Who says that firefighters can't exhibit their feminine side?

We can't wait to thank Jake and Gina in person on Friday when they come to visit us in Philly!

Meanwhile, we're now at 169 days...woo-hoo!

Finally, if you're still reading this, I just want to wish everyone out there in the real and virtual world that we inhabit the most joyous of holidays. May your season be filled with peace and love and may your new year get off to a great start.

Sunday, December 21, 2008

Happy Hallie-Days

Well, we've made it through the week! Yay! This was no mean feat, since it involved the ENT, eye doctor, a weight check, the dentist, a portrait sitting, the GI, and a childbirth class. Whew!

The weight check went fairly well--unfortunately, our nanny forgets whether the scale read 29 lbs 5 ounces or 29 lbs .5 ounces (the decimal point is, alas, a pretty big deal around here, as it is the medical world generally. We are not ones to forget that the good old decimal point got Hallie o'd-ed on steroids (dexamethasone) back in the NICU). Anyway, the key is that she hasn't lost weight and, if the GI's scale is well-correlated to the pediatrician's scale, she does, indeed, weigh 29 lbs. 5 ounces, which is super. She is also super tall--36 inches. And hence at the 50th percentile for height and weight and completely well-proportioned. This is fine by us.

The dental visit, though, presented more in the way of trauma. The clinic itself was great and the resident was totally gentle with Hallie. Hallie did cry when they checked her teeth--it's traumatic to have anything done to her mouth, for all the obvious reasons, plus we have good reason to believe that her teeth cause her quite a bit of pain but, like most micropreemies, she grins, bears it, and doesn't quite let on about how much it effects her. The damage to her mouth, though, is extensive and the Penn dental folks think that she'll need three teeth capped and other reconstructive work. Unlike evil dentist number 1 (see a few posts earlier for this one), they spent a bunch of time with us (and not just two minutes between other patients) and took a complete medical history. The first dentist hardly glanced at all the paperwork I filled out; the resident, in contrast, went through everything I wrote, asked for more details orally, and made sure she knew what the deal was, which specialists Hallie sees, and how to get in touch with them. She felt (and her attending confirmed) that general anesthesia was the only way to handle Hallie's teeth; it will let them do a full set of x-rays to ascertain the full extent of the damage; perform a really thorough cleaning; and cause her the least trauma. It will also protect her airway (dentist number one never asked about Hallie's history of aspiration and laryngomalacia and vocal cord paralysis; these dentists felt that all of those things contraindicated even conscious sedation for Hallie since it's not clear she'd be able to protect her airway in this context). While we are in the OR--which will be at CHOP, not a satellite surgical clinic, with the very skilled CHOP anesthesiologists handling the tough stuff, we may end up doing other stuff. Dental will consult with ENT to see if they want to re-do the ear tubes or deal with the granulation tissue issue and GI will probably order another scope just to make sure there is no EE. The downside of all of this is that we will have to wait until early February to get all of this done, and no doubt, given our luck and Murphy's Law, the Great Expectation will arrive just in time to make this very very complicated.

Speaking of the Great Expectation, the little nameless one stayed put so that Sharon and I could attend our Childbirth Class today; last time, the multiple class we were slated to take happened two days after the girls were born and obviously was a moot point by then. So we were very relieved to make it to this date (indeed, my deeply superstitious tendencies prevented me from even registering for this class until we hit 28 weeks). The class taught us a few breathing exercises (sadly more appropriate for me than for Sharon since I am the one more likely to pass out from hyperventilation) and laboring techniques (I think Sharon will find these handy to do when the residents are busy reviving me). Now we're just waiting for the next ultrasound (on New Year's Eve) to see how big our kiddo is and whether she is head down, head up, or lying sideways. Whatever her position, Sharon is pretty sure she's leaving about zero room for her intestines and bladder right now. But, honestly, Sharon looks great--she is running small (though our OB assures us the baby is fine) and is only beginning to reach that truly, wonderfully uncomfortable stage of the pregnancy.

And speaking of wonderful, check out the holiday pictures of Hallie:

Amazingly enough, we actually took these on the heels of the dental visit (separated only by a short detour through New Jersey when we kept getting lost en route to Babies-R-Us). Even though the picture session kind of coincided with Hallie's new nap time, our kiddo was in great spirits (and the photographer did a great job). And so, somehow, more or less gracefully, we managed to take pictures, make up cards, and actually mail them out a few days before both Chanukah and Christmas this year.

Equally astounding is the fact that one of Hallie's Chanukah presents, which I ordered on E-bay last Tuesday night in the wee small hours of the night, made it to our house by Friday afternoon. We decided to give it to her a bit early since its a not-easily-wrapped item: a 2 inch thick tumbling mat. Hal has been practicing her forward and backward rolls on it ever since I unpacked it and, hands down, it's one of her favorite things in the universe right now.

And speaking of favorite things (or at least topics) and being on a roll, our current vomit-free count is now 167 and counting. We are really hopeful that 170 is within reach!

Wednesday, December 17, 2008

How Fun!!!

Lately, Hallie has taken to exclaiming "how fun!" or "that's great!" when she's having a good time and really enjoying herself. We're fairly certain that she's picked these up from Sesame Street, so it's only fitting that the first shot of this mostly picture post is this one, which Ami took last Thursday:

Note that the penguin, while not officially a member of the Sesame pantheon, does count among these gods of Children's Television Workshop as far as Hallie is concerned. Trust me: there are an awful lot of penguin segments on the "Street". That, and chicken scenarios. It's a whole lot harder, though, to find a plush chicken than it is to locate a plush penguin.

On Friday, Hallie and I were both happy to have our mood lifted after the rather annoying IFSP (mentioned in the previous post, and, yes, we are taking it in stride) by the unexpected and delightful appearance of Carmen and Vicky at our doorstep. They brought another fun book from Karen Katz, Ten Tiny Tickles, for Hallie as a gift. Hallie thoroughly enjoyed herself (and then proceeded to match up this book with the several other titles she has by Karen Katz. I guess she knows that the graphics are the same. I find this a bit astounding if only for the reason that Hallie has hundreds of books and yet manages somehow to keep track of them in her little brain which, yeah, I think is pretty well developed and chock full of great factoids).

Later on, Hallie modeled her new footwear for Carmen and Vicky:

Yes, those are pots on Hallie's feet. They are kind of an all purpose toy, serving just as well in the pretend-play kitchen, as drums, and as shoes.

On Sunday, the three of us had a preemie play date over at Elizabeth's house. Elizabeth, another 23 weeker, and her mom, Wendy, live in the Philly burbs and our friends Anne and Eliza drove in from Princeton. The three girls generally did well in the parallel play department (there were no meltdowns or moments of tears related to snatched toys) and Hallie and Eliza managed at various points to play within inches of one another in what could have been construed as engaged play. As moms used to questions about such things on IFSPs, we all took pictures to offer proof to the Early Intervention folks next time they come around:

Here the girls are taking some important calls:

While Hallie might be the more likely of the two to make the first approach (with her usual gleeful "HI!!!"), Eliza is making sure here that Hallie knows who is in charge:

Hallie didn't seem to mind, though. The girls actually gave each other a few hugs (and high fives) at the end of their date, and we managed to get one on camera:

Next time we'll try to get some pictures of Elizabeth, too. Sharon, Hallie, and I arrived at Wendy's a bit on the late side and Elizabeth was already getting close to going down for her nap so, sadly, we had no opportunity for a good picture of the three girls playing together.

Monday was a beautiful day---the morning was sunny and hot (upper sixties), and Hallie and I headed out for a marathon park session. I tried putting Hallie's lighter coat on her, but she would have nothing of it and requested her pink puffer coat instead. She was a bit too bundled for the weather but did not seem to mind.

When we got to three bears park, she needed to swing first thing, as usual. I put her in the toddler swings but, to my shock, her feet practically dragged on the ground and she seemed way too big for the bucket seat. I had her on the regular swing for a few minutes but she hasn't quite gotten comfortable on these yet. I suspect this will come this summer.

Then I tried staging a cute shot of Hallie sitting on the bears at Three Bears Park, but she was less excited about this than I was. The results were not as cute as I intended them to be (mostly because there wasn't someone jumping up and down behind me to get Hallie to smile) so they won't serve as a good holiday card option for us, after all.

I guess we're destined to keep the appointment I made for a holiday card shot at Kiddy Kandids at Babies R Us this Thursday (after our dental appointment. How potentially exciting).

Then it was back home for lunch and Occupational Therapy. Jenine, Hallie's OT, is going to be doing a bunch of physical therapy stuff with Hallie from here on out and we began this on Monday. I dragged the yoga ball back up from the basement, along with Hallie's hippity hop kangaroo, and Jenine and Hallie got to work.

Just one look at the expression on Hallie's face and you can tell she's going to have a blast. A really nice tumbling mat is now on the Holiday list--Hallie loves all sorts of physical challenges and, if we had our way, we'd turn the whole place into an OT/PT gym for the kid (sadly, there's no room for everything, but easily foldable equipment and inflatable stuff like balls works out quite nicely).

In sum, Hallie had a great few days. She was eating better than usual, vomiting less than usual (and we could have avoided this altogether had it not been for a failed attempt to get her to take an antibiotic the taste of which she found absolutely repulsive). Not too bad. We are now up to 164 days without vomit this year. I'm hoping that we make it to 170.

Today, however, marked the beginning of our medical marathon. We had ENT this morning followed by Ophthalmology this afternoon. The ENT appointment was blissfully brief and not terribly traumatic. However, we did find out that the left ear tube is out altogether (they are designed to fall out after six months to a year and Hallie's made it a bit over a year) and the right is falling out. However, the right ear has some granulation tissue and fluid build up, so our girl now needs ear drops (we feel a bit like a pharmacy around here, sadly). She is not very thrilled with this and it's clear her ear was hurting her tonight after her bath (she may have gotten water in it or poked herself in the ear with her finger--unclear which). She consequently spit up a bit (didn't have much in her at the time, thankfully) and cried louder than I remember hearing her cry in a long time (remember that she has a paralyzed vocal cord). She did go to sleep quite quickly thereafter, but we forgot her evening dose of Reglan and Axid amidst all the fuss and attempts to calm her down.

The eye appointment was great, in contrast. The doctor, who has been following her since she was in the NICU, was amazed to find that Hallie shows no signs of the pretty pronounced retinopathy of prematurity (ROP) that brought her to the cusp of laser eye surgery. Hallie is seeing around 20/30, which is normal for a toddler, and is a bit less far-sighted than she was last year. The eye doctor was also pretty amazed that Hallie read letters off of the screen, and not the more typical shapes, and said that we can just have our ped follow Hallie at age 3 to see how well she reads the chart and, if neither he nor we have any concerns about her vision, we don't have to come back in until she's around 4 for another ROP check. That sounds good to us!

Tomorrow is a dreaded weight check, and I'm not feeling great about it. But I am feeling great about our little girl, who is not really looking much like a toddler anymore. Judge for yourself:

Friday, December 12, 2008

The Annual IFSP

Today was one of those days. We're entering a heavy appointment season, with GI, ENT, Ophthalmology, Pulmonology, and another dentistry evaluation all in the upcoming week. Oh yeah--and a weight check. For those of you keeping score about number of days in doctors' offices, that's 7 out of the next 8 days. Great.

But first we got to do our only in-home evaluation: the Annual IFSP. In Philadelphia they use something called the DAYC (Developmental Assessment of Young Children) tool, and I am not sure how it rates relative to other similar diagnostic tools, but I can say that this is not one test that Hallie managed to ace. Indeed, even though she has outlier skills that don't get assessed by this tool (she can recite the entire alphabet, count to 20, catch a ball quite well for a toddler and other skills that no one cared to take into account), she otherwise came in with a 30% delay in ALL areas. Yes--ALL areas: gross motor skills (cannot walk up and down steps or negotiate curbs); fine motor skills (cannot draw a circle, doesn't hold down paper with her other hand when scribbling; can't really use utensils to feed herself); receptive language skills (could not bring us one shoe, though she would happily run over to shoes and put them on and say 'shoe'; cannot tell the difference between heavy and light and big and little); expressive language skills (very little spontaneous two-word-plus sentences); and social-emotional skills (does not pretend play in any meaningful way, will not play in an age-appropriate way with two or three other kids, cannot self-sooth or self-regulate, etc. Forget about toilet training; that one we're not even close to beginning). So our 30 month old is at the level of a 20-21 month old across the board. That's a 30% delay in all areas.

This was really hard to hear. We know Hallie to be socially eager, intellectually curious, book-loving, and someone who tries to figure out cause and effect and how things work. We also know that she has an expressive language delay, feeding difficulties, and seems socially younger than her peers. But we don't think of her as globally developmentally delayed and we're not even sure what to do with that.

We know we can, as a family, work on a whole bunch of the deficits. Just like we've taught her colors, shapes, letters, and numbers, we can teach her relative concepts and try to help her along in the imaginative play department. We can also work with her on climbing the steps (we've been doing this, holding hands, for a few days already--on Hallie's initiative--and we've already made great strides on this. It's just not enough to try--you have to master the skill to count it in the DAYC). But facing down everything, plus the medical stuff, all at once is a challenge. We're up to it--we have to be up to it. But that we have to do all of this doesn't make the reality of these delays any easier to deal with emotionally.

Anyway, we're now facing the addition of more therapies--not paring down on therapies--as Hallie gets closer to aging out of the birth-to-three system. If we tried to address everything at once, that would amount to seven therapy sessions a week, which is way out of control, so we'll swap out one speech session a week for feeding, work on PT with our OT and see about adding a formal PT, adding in a weekly Special Instructor to teach our kid how to use her play kitchen, swaddle babies, and pretend to be something other than just a toddler, and have consults with nutrition and social work fortnightly on top of everything. We'll try to get some of these gaps closed by the time the IEP (for transition to 3-to-5) testing in March rolls around. But we left the meeting with a sense of foreboding about the future and a fair deal of shock. Like I said, I expected delays, but not so many and not by so much. And though I know that she's doing well, I hate it that we always and still have to add "for a 23 weeker." I know intellectually that the circumstances of her birth are hard to live down, and that one should not expect not to adjust her age until she's four--even though the doctors and testers stop doing this at two. But still...

Otherwise, it's been a challenging week and eating is still going poorly and Hallie's reflux, for no apparent reason, seems out of control. We finally picked up the metronidazole from CHOP's pharmacy and will start that tomorrow (hopefully with fewer adverse effects than we typically see with antibiotics) and we're going to pick up the Axid our GI called in today and start that tomorrow as well. And we're trying to get Hallie onto a better schedule to see if being more rested helps address some of the out of control sensory-seeking behaviors we're seeing. And we're going to try to break her of some of her bad habits (food refusal and throwing; object throwing; disorganization generally). Hopefully some of what we try will work and help and we'll pull things back together around here and finally be done with the crisis we've been in now since at least some point in October.

Oh--and we'll enjoy our sweet girl and love her and cherish her. That's probably the most important thing we'll do, and keep doing.

I have some cute pictures to post and other upbeat stuff to say, but I'll do that separately in another post later.

Sunday, December 7, 2008

On Eating and Its Consequences

That does sound a bit like an 18th-century tome, doesn't it, except that the 18th-century tract's title would have been followed by a colon and the following:

"a discourse concerning the first-hand exploration of the evidence of digestion, or lack thereof, and the malfortunate outcomes for the teeth of a young girl, witnessed at first hand by an explorer through the world of Hallie, recently yet tentatively among those who chews her food and will perhaps thereby avoid the moral and other consequences of sleeping with her bottle."

Yeah, that about sums it up. Gotta love those early modern titles: while long-winded they capture the essence of the thing and let the reader know precisely what's in those moldy binders before he or she mistakenly grabs the book off the shelf thinking, perhaps, that it's some excellent mystery.

Except for, of course, it is: no one really knows where this consequences-of-prematurity thing ends.

OK--where to start, now that you know the subject?

Well, I guess I'll begin with the family meeting/conference call that happened at the ped's office on Wednesday. It really wasn't quite the whole team. It was me, Sharon, and Ami (Hallie's intrepid nanny who is as invested in this as we are), our ped (who is great---and I'm not just saying this because he knows we blog), and our GI fellow, who called into the ped's office. Not able to make it was Allergy (which was too bad) and we didn't invite pulmo (though we may be seeing some exercise-induced asthma issues with Hal, but I'll raise that at our appointment in two weeks) and eyes and ENT were not really relevant. I would have liked Allergy's opinion about a repeat scope, but we'll have to get that later on. Right now, our chief goal is to rule out some other stuff so that we can figure out to what Hallie is really allergic and what just makes her tummy uncomfortable for other reasons.

The good news from that meeting is that we can take serious weight loss off the table. Hallie weighed in at 29 lbs (1320 grams), which is only a half ounce gain since early-mid September, but, given that she's been sick and, given that this still puts her at above 50% on the weight curve for her actual age, we're less concerned that we were a week ago about this. She has also gotten a bunch taller---we did not measure her length (she gets that done at GI next week), but we know from the way her pants are fitting (as in, she doesn't drag three inches on the floor) that she's getting pretty tall. This makes her seem skinnier.

So, with major nutritional concerns off the table for now, we can talk about the really serious stuff. In my mind, the biggest question is why her motility is so delayed and what we can do about this. It is typical for a person to void about 90% of their stomach's content in an hour, and we know from the last motility scan that Hallie had about an 80% residual at an hour (for informational purposes, this is formally called a milk scan---where they strap you down on a table after you drink some barium-laced formula and then they chart how quickly your tummy empties; the scan also picks up big reflux events, but the gold standard for reflux is a pH probe, which we've never had done and do not ever want to have done). We know from empirical evidence (undigested food coming up three or even four hours later) that Hallie's motility is still impaired. Sadly, a bag or two of time stamped vomit will not suffice for the GI as 'evidence', so we will have to try to do another scan to confirm this. This shall not be any fun, given that Hallie doesn't easily get strapped to anything these days (more on this later) and we need to find a radiologist willing to experiment with the as-yet unpatented 'seated milk scan.' We can definitely keep Hallie in a chair for an hour and distract her properly, but lying back on a cold steel table is something that elicits memories of a. RSV shots b. ng tubes and upper GIs and c. quite possibly some NICU trauma in our girl. We firmly believe that toddlers have memories (and Hallie's seems prodigious--she remembers people and associations; she knows about twenty books and more episodes of Sesame Street---can even remember what letter of the day goes with what episodes---and Signing Time by heart and we are not looking to traumatize our kiddo further. More on this later, too). Anyway, so we'll try to do the scan and see if it works, and if it doesn't, we are not going to push it.

One reason we are doing this is to see if Hallie will qualify for an FDA waiver to use cisapride, a very good motility drug that has very bad cardiac consequences for a small subset of people who have Long QT syndrome (a cardiac arrhythmia). She would have to do a cardiac workup (EKGs etc) but it could very well be worth it if this drugs helps empty her stomach more quickly. She is very severely volume limited and very gassy and we believe very uncomfortable and has developed some negative associations with food because of this.

We will also treat her empirically for bacterial overgrowth in case that is part of the problem. This involves flagyl, a heavy duty antibiotic, and we're a bit concerned that Hallie will not take to it well (she has a history of not tolerating antibiotics) but we'll try.

And we're still trying to get someone to answer whether we can safely add digestive enzymes to her food just to see whether that makes a difference. I need to rephrase this into a simple 'yes or no' question and try to get the GI to come out for or against them next time I see them (on the 19th).

If we rule out motility, or figure out how better to treat it, we may be able to isolate what sets Hallie off food-wise more effectively. I suspect she'll be okay on fruits and that more protein rich foods will still be more of a problem, but at least we'll have more variety in her diet.

Speaking of diet, the other thing we talked about with the ped and GI was how to get Hallie to eat more willingly. Here I need to explain: Hallie VERY willingly eats 'safe' purees until she is full (often gets less in than she needs to gain, but not to maintain her weight). The problem is that she has never made the leap to self-feeding or dealing well with texture. We know that she can chew---she does this with her sticks and fries---but it is a lot of work and she tires quickly. We think this is because she has poor muscle tone in her mouth (no doubt about this one; this has also impacted speech production and as her speech gets stronger, so does her chewing, and vice versa). We also think her swallow is a bit off--she gulps with every bite to clear her mouth and it cannot be fun to do that. We are not sure if the gulping is related to some sort of inflammation but we know that it's not structural and that her paralyzed vocal cord is not the culprit (though it probably doesn't help things much).

The not self-feeding and not eating textured foods is one of the big things that keeps her from being a 'typical' toddler. She is eating at the stage of a 9-10 month old, not a 30 month old. And she requires a lot of help from us and eating becomes a full time job both for whoever feeds her and for Hallie herself. Toddlers don't like to sit still, so this reinforces the negative associations that Hallie has with food and fuels her eating aversions. Not to mention that it makes it hard for us to ever leave the house.

Our GI rather unhelpfully suggested to us (YET AGAIN) that we tube Hallie. Uh, no, we don't think so. Number one: who the heck tubes a kid who is at the 50th percentile for weight and demonstrates that she can gain well? Number two: tubes are massively contraindicated for DGE, and we are not doing a GJ tube. Number three: she is not delayed on most of her milestones, is making fabulous speech gains right now (she has numerous two to four word phrases at this point and hundreds of individual words and signs). So, no, not unless you can convince us that there is some reason other than convenience to do this. This is major surgery and most likely will gain us very little and lose us much in the process.

We explained all this to the doctors, though I still don't think they completely comprehended that Hallie is not classically averse to food---as long as she likes it, or she knows it's not making her sick, she willingly tries food (once she begins to realize that she doesn't feel well on a particular food, she will reject it. We see this as self-preservation and not as a feeding aversion). She will play with her food, as a couple of the pictures below amply demonstrate). And her vomiting is less frequently at meal time than after a meal---when she is stuffed and feeling nauseous. So some of the classic approaches to feeding therapy won't work for Hal. The question is: what will?

Our ped wants us to play around with letting her feed herself and control things more. We've been doing that for the past couple of days, and, while Hallie's made great advances in terms of texture, this process means that she is eating very little food (and we're having trouble letting go of calorie counting) and the process itself is very messy.

First, the texture advances: Hallie actually ate about a third of a whole pear yesterday. I cut some slices up for her into 'stick' shapes (and peeled them) and she ate four or five quite happily and then signed and called out for "more." We were thrilled and surprised since, other than requesting potato sticks or french fries, Hallie has never actually asked for more of anything (other than her bottle, which is mostly for comfort). So I cut up some more and she ate most of those too. She ate more at lunch. And then at dinner she ate about 15 fries (50 calories, plus some more for oil).

Hallie also expressed a lot of interest in feeding herself purees, but can't quite manage a spoon terribly effectively yet. She begins by dipping her spoon into the puree (either prunes--homemade--or jarred baby food pears and apples) and then gets frustrated and figures out that it is easier to eat this (and her cheese/yogurt mix) by hand. She thinks it's a blast, but she gets a whole lot more on herself than in herself.

Here are two of our favorite shots from the 'be your food' series:

Note to self: prunes does not make a very effective hair gel.

So, we're going to continue to let Hallie control things more and play around with solid textures and do a weight check in about ten days to see what she's lost. We are hoping that more eating of solids will yield more capacity to eat solids quickly (a big issue for Hallie is how slow it goes; she hates to be in the high chair for too long and who can blame her?). If we can get her to add more solid goat cheese (goat mozzarella) to her diet, we'll be able to get her caloric intake a bit higher too. Ditto with french fries. Our goal is a whole serving (which is still only 110 calories, plus oil).

It's taking a huge amount of self-control on our part not to run and feed her a jar or ten of food to make up for things, but as long as she's not dehydrated or losing weight too quickly, we've got to keep trying. And if, in the end, we can't do this ourselves, we will need some intensive feeding support (but it has to be the right kind, which is not going to be easy to find).

Speaking of professionals that one doesn't trust, behold the pediatric dentist. With some trepidation and foreboding, we took Hallie to the dentist for the first time yesterday (about a year late, even if we account for her prematurity). The guy we saw is reputed by a lot of parents to be the best pediatric dentist in town, but we beg to differ. First, the waiting room at 8am on a Saturday was chock full of people. We were a bit surprised to see so many parents (fewer kids, because the places discourages parents from coming back into the treatment area) at such an early hour. We waited our turn and finally went back to the dental zone. The dental hygienist was nice enough, but Hallie wasn't thrilled (she has lots of issues around people touching her mouth. Gee, with repeated intubations over the first 9.5 weeks of her life, a lot of scopes and OG tubes, do you think she's got a reason for this?

You will note in the photo below that only one of us is smiling:

The dentist then came into the room and had a look-see. He spent about five minutes with Hallie (and we suspect even less with her medical form, which was filled out by me, and required much more than the standard one line or two provided for details). He noted severe decay, including nerve involvement, on the molars (one required capping) and pretty extensive enamel decay on a few other teeth (I'm not sure how many because he was really not specific. There were kids in six or seven dental stations, one dentist, a few hygienists, and no real time to spend per anyone child. Truth is, it felt like a factory with a couple of toddler- and child-friendly murals and games in the waiting room). His verdict: give her a whiff of nitrous oxide, strap her to a 'papoose board' (he did not appreciate my analogy of said device to a strait jacket), cap one tooth, bond a few others, send her home. When we expressed concern about the emotional trauma, and how this might adversely impact her already fragile mouth-related stuff, he said 'she's young; she won't remember it.' (Reminds me of all those idiots who treated premature neonates without any pain killers because they thought neonates don't experience pain. Not true at all). As I said, Hallie remembers everything and is a very bright little girl. So we asked about alternatives. His reply: dental surgery with intubation and general anesthesia. Now we might go this route, but not with him, and we need to explore the middle of this spectrum: what about versed? what about other forms of 'twilight sleep'-ish drugs (like the ones Sharon got for the IVF and FET transfers; she really has no memory of these events at all). His answer: no go.

Our answer: no go to him.

So, if you are reading this and are in the Philly area and have a recommendation for a GENTLE pediatric dentist, please email me at abbyschrad at earthlink DOT net. We will be talking/calling around to other dentists, and particularly those who specialize in special needs kids and doing it pronto. We want to help Hallie and making her mouth stop hurting so much will probably go far in this direction (getting her to brush also will, we hope...Amy can do this, we cannot. Amy must train Hallie to brush for us. Not sure how this will go down).

Anyway, that was all a little disappointing. It's only after the fact that we figure out what kinds of questions we need to ask before we schedule appointments with new types of specialists. But better to do this, even if we have to pay out of pocket for second consults, than to traumatize our kiddo. This experience also just reinforces the sense that we have that we cannot ask the parents of typical kids for recommendations; they simply don't know our situation. It's not that we are pickier than your average parent (well, okay, we are pretty picky) but also that we are dealing with a special set of circumstances. And that's okay--we need to meet and treat Hallie where she is. And in the process, we really do find some of the best professionals out there, so it's not all bad, right?

The other thing that this all confirms for us is that mommy instinct rules. (in the interest of gender and relational equity: daddy and caregiver instinct rules, too!)

What else, before I draw this huge tome that resembles the 18th-century tract in terms of length as well as title, to a close? Speech gains: amazing. Hallie has an avid interest in counting everything but her favorite thing to count is her toes. She likes to pull off her socks at diaper changes and count them and count them after her bath and before bed at night. Lately, she has not only been saying "one-two-three-four-FIVE!" but following this up with "FIVE TOES!" She has also been approaching Sharon with the following phrase "read book mommy please!". I think this counts as a real sentence! Woo hoo! She has been asking for increasingly sophisticated things by their name, resorting to her "I want some that, PLEASE!" only when she cannot name it. Not everything is clear, and sometimes we have to guess (figuring out that she was saying "Signing Time!" and not "Rachel" for her favorite show took a bit of work but I managed to do it---especially with the help of her addition of a fairly good approximate of the title in ASL). But words and phrases are coming in fast and strong and we are thrilled.

The other milestone reached this week is that Hallie has figured out how to put on her own socks. She is thrilled by this. So she can handle socks and shoes at this point; she is working on shirts and pants but tends to mix the two up a bit. She'll get there. She always does.

And speaking of getting there: her cold is clearing (still coughing some, still a bit congested, still on Albuterol) and the vomiting has abated a lot. So we've clocked in 160 days without vomit in this house this year, so far. Never mind that caloric intake is down (the two do go hand in hand, alas!)

And finally, as if that is not enough, Sharon hit 31 weeks yesterday (and her 38th birthday today). The ped, who had forgotten that Sharon is pregnant and that he is the one who referred us to our OB, just thought she had put on some weight...but of course said nothing because he has a wife and three daughters and they have trained him well. It's kind of nice to know that Sharon does not at all resemble a full-term pregnant lady, which is what she looked like at 22 weeks with the twins. So our fingers are still crossed, but things are looking more and more like she will go to term or close to term. And we are grateful for this.

OK--if you survived this update, you are a courageous reader indeed. I will try to be more timely next time!

Monday, December 1, 2008

'roids and Albuterol to the Rescue

Well, after an at least half an hour of uncontrollable coughing (and not just any old kind of uncontrollable coughing but really violent, gut wrenching coughing), I called the ped's office last night around eleven. The after hours nurse (who pulled up Hallie's chart and was very much on top of things) got in touch with the ped on call (it's a faculty practice, so one of them is on call 24/7. It's one of the things we really like about our ped's office. That, and the fact that they can get you in for a sick appointment by six if you call by four pm). The ped on call heard the update and had us take Hallie in to the CHOP ER. After gathering her stuff (I always pack as if we're going to end up being there for a few days. That's partly out of habit (after all, this did happen a couple of times) and partly out of the take-an-umbrella-and-it-won't-rain philosophy by which I live. Anyway, for the sake of reference, I might add that we only live fifteen minutes by car from CHOP. But still, it pays to be prepared for all eventualities and it's really hard to leave a sick kid if she does have to stay in the hospital. Plus, remember that I used to go to the Soviet Union to study Russian and things like that back when it was the Soviet Union and there is nothing like being prepared for anything in an economy of scarcity.

Anyhow, the ER wasn't busy but we still waited quite some time. Hallie was a doll. She was wide awake (this was the middle of the night, and that is not typical at all for her) but not in distress at all (of course...this is how it usually is. She usually perks right up and seems a whole lot better the second we get to an ER). She was still barking off and on, but she weathered the wait brilliantly. She recited her alphabet about a gazillion times, read the "welcome" sign letter by letter, said hi to all the other kids waiting to be seen, drew in her complimentary coloring book with her complimentary crayons (which she then skinned, as she is wont to do), and was great even when they triaged her (oddly enough, she did not scream in pain and fear when they took her blood pressure and did a pulse ox this time). Her pulse ox was fabulous (96-100) and this was reassuring, but given the complex history and the barky cough (which she demonstrated for the triage nurse), they decided to take her back to be seen.

The docs ordered a chest xray (thankfully negative, ruling out pneumonia or a swallowed foreign object) and, after a bit of testing (a swab for pertussis), ordered up a dose of oral dexamethasone (a familiar drug that saved her life, but one not used lightly---my sense is that she REALLY needed this or orapred or something...I'd been mentioning to Sharon for days that I thought the kid needed steroids for this cough) and an albuterol treatment (Hallie helpfully counted to ten for the RT and even pushed her own puffer's sort of sad and sort of great that she is able to participate in her own medication). So, five hours after we arrived (we hung out for a bit of observation), the family headed home in the faint light of the Philadelphia dawn.

We're exhausted (slept 'til noon, but that meant a total of six hours sleep for Hal, who woke herself up from her nap yesterday coughing and could not sleep last night at all, and no more than that for either of us). But I think this regimen is working. The albuterol, as usual, makes Hallie really wired (this too could be the after effects of the steroids) but her cough is MUCH improved. Her eating is still sucking, but she is able to take her bottle without vomiting again (every bottle last week was deposited then refunded with a cough) and she seems to be feeling better. So this mystery is solved, at least. And, even though today's intake was no more than 800 calories, they ALL stayed in her this time. So chalk up day 157 for us, even if the victory is bittersweet since 800 calories is what she needed when she was under 1 years of age, not closing in on 3.

Our big family meeting with the docs is on Wednesday so maybe we'll have some more information about where we are going with Hallie at that point, but meanwhile, we're just grateful she's feeling better.

In terms of other stuff: she did a couple of cool things today. First, back in the ER, as usual, they 'banded' her with a couple of wrists bracelets (for allergies, for ID purposes). She hates this and they really bug her and she likes to take them off. Usually they are loose enough for her to wriggle out of on her own, but not this time. So, after hours of being tortured by them, she looked at Sharon, pointed to the bracelets, and said: "It hurts." While they didn't really hurt, so much as bug her, that's pretty huge since it indicates that she is going to be able to tell us when something is amiss.

Second, when the mail came today, I was feeding her in her highchair. She looked at me and said: "the mail!" Who knew that she knew that?

And finally, one of the things we got today was yet another kids' toy catalog (we get a serious number of catalogs and one wonders if it would not be more profitable for companies to cut back on these in this economy since no one is buying stuff anyway). Inside the catalog (I think it was a Highlights Toy catalog) was a picture of a toy guitar. Hallie pointed to it, said "guitar" and began to strum it. Very smart.

Sunday, November 30, 2008

The Big 3-0!

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.

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).

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 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).