Say "AAAH!": A Post About Dentistry and Medicaid

Two weeks ago, I took Hallie in to the Pediatric Dental Clinic run by CHOP at the University of Pennsylvania Dental School for her six month check up. I did this with some trepidation; Hallie is no big fan of dental work and is pretty averse to having anyone put stuff in her mouth -- this isn't just an issue of food. Who can blame her, really; she has a history of doctors shoving endotracheal tubes; oral gastric feeding tubes; small cameras; and a bunch of other medical devices into her mouth and down her throat and a very long history of plenty of stuff coming up out of her that should technically stay in her stomach.

On top of this, we have considerable mommy guilt about Hallie still being on the bottle and still falling asleep with it in her mouth. The dental attending whom we saw at CHOP/Penn last winter was unforgiving about this, to say the least, and put the blame squarely on our shoulders. In no uncertain terms, she accused us of being irresponsible, negligent, and even abusive parents who had done their daughter a serious disservice by not putting a G-tube into her tummy instead. When I plead my case, it fell on deaf ears. Thankfully, the dentist who actually performed Hallie's dental surgery (a thorough cleaning, x-rays, and an extraction) last February was far more understanding of our location between a rock and a hard place and wasn't into moralizing or reprimanding us. But still the mommy guilt lingers on: even if we know that Hallie can grow, or at least hold her own weight wise, by still consuming most of her nutrients from a bottle and that she went on a full food strike when we tried to remove it from her this past winter, and even if we know that we're sort of given a pass by virtue of the disabilities that we wish she did not have, it doesn't help to walk around thinking that we are harming Hallie, or at least her teeth, by not removing the offending bottle.

In the intervening months between last February and now, we've managed to get Hallie used to--and even fond of--brushing her teeth. At first, we just let her chew on the brush and put a bit of fluoride toothpaste on it for her. As it turns out, she much prefers our cinnamon flavored Crest to the bubble gum kid's variety emblazoned with the likeness of Dora the Explorer or Sponge Bob Squarepants. We then started to brush for her, and, over time, she began to open her mouth wider and wider for me and let me do an increasingly thorough job. She's now at the point where she will sort of brush her own teeth (though my efforts are more effective) and will ask to brush her teeth multiple times a day. She's even gotten good at spitting water out after she's done (indeed, this activity is one she finds extremely appealing). I haven't managed to get her used to swishing around fluoride rinse but that's something we'll continue to work on with Hallie. So, at least from the perspective of oral hygiene, we knew that Hallie's mouth is in a better place now than it was a year ago. Still, the nagging feeling that we're ruining her teeth with the bottle lingered on.

As it turns out, we were right and the Wicked Witch Dentist of West Philadelphia was very wrong: it wasn't the bottle that was eroding Hallie's enamel but the chronic regurgitation. Now that she vomits infrequently, she's doing a whole lot less damage to her teeth. (We're now at 239 days without vomit, and counting, for 2009). As it turns out, her mouth is in great shape and there has been no further discernible damage to her teeth this year.

But I'm getting a bit ahead of myself here.

To prepare Hallie for the visit to the dentist, we began by telling her social stories. I let her know that a dentist was going to take mirror, put it in Hallie's mouth, and use a big shiny light to see her teeth. Hallie and I looked at her teeth in the mirror and practiced 'saying Ah!' and opening wide. I told her that she would have to lie down on a very big chair and that the dentist would look and then brush her teeth for her and that it would not be fun but that it also would not hurt. We went over this scenario for a few days before the big event.

When we got into the dental office, Hallie was very cooperative, at least at first. The dental student showed her the mirror and allowed Hallie to play with it, look in it, and place it in her own mouth.

Matters became a bit dicier when the dentist actually had to reach in and have her own look around inside Hallie's mouth. This elicited some tears, but not too many:

Hallie did work hard at "being brave" and held my hand the entire time.

Matters got a bit worse when the dentist brushed her teeth for her, but not too bad. Since we are using a regular toothbrush at home, the dentist decided to use a regular one to do the cleaning, but showed her the 'tickle brush' (the electric version typically used for cleaning) and told her we would be using this one next time. We'll pick up a battery operated toothbrush to use at home in anticipation of this next visit, I think.

The only time things got really dicey was when they had to paint Hallie's teeth with fluoride for her treatment. Hallie's not a big fan of bubble gum flavored stuff, and, besides, the fluoride no doubt tasted more medicinal than bubble gum would have, so there was some gagging but no heaving during this procedure and we escaped the office in the same clothing in which we arrived and without leaving a pool of vomit in our wake. That was a pretty major victory, as far as I am concerned.

Unfortunately, upon leaving the practice area and going to check out, I was delivered the news that Hallie's insurance through Medical Assistance (Medicaid) had been canceled. Having to pay out of pocket and knowing that I was about to face a huge battle for reinstatement left me with a bad taste in my mouth.

(Note: it's not like we don't have private dental insurance for Hallie; in fact, we have her double insured for dentistry under our own policies. It's just that the CHOP Dental Clinic, which serves only those who are Special Needs or poor, only accepts Medical Assistance. And while there are pediatric dentists who do take our insurance, we were pretty badly turned off by the biggest Center City practice and unable to locate another private practice that was good at treating special needs kids locally).

By the time we got back in the car to go home, I had confirmed with the HMO that administers our Medical Assistance plan for Hallie that her insurance had, indeed, been terminated, effective October 31, 2009. This meant that bills for all the therapies that she had received during the week (Floortime/DIR; OT; PT; Speech; Special Instruction; and her Personal Care Assistant) were going to go unpaid. Even more significantly, it meant that all of these therapies were in jeopardy and might require suspension while I worked out this kink in the system. The cost of these therapies is probably in the area of a thousand dollars a week. I can't say for sure how much the total is because we never see bills; up until this point, they would just get paid. The only thing we ever needed to deal with was getting the proper referrals and prescriptions and calling to make sure that Medicaid, as our secondary insurance for Hallie, got billed for co-pays. But there is no doubt that the therapies are expensive and that having to cover them all while we worked out this problem would have been impossible for us to do; Hallie's therapy costs exceed our mortgage payment by about 200% and juggling both would have involved bankrupting ourselves and maxing out our credit cards.

So I needed to step into high gear and solve this crisis. Which is precisely what I did the second I got home. First, I went to this website put together by the Pennsylvania Health Law Project to bone up on the procedures for certifying that Hallie falls under PA Loophole 95, which allows disabled children to be covered by Medicaid in the state of Pennsylvania regardless of parental income. Then I got on the phone with my contact over at the Disability Rights Network of Pennsylvania to explain what had happened and to make sure that I was handling matters correctly. Both agreed that Hallie should not have been dropped from the Medicaid rosters in Pennsylvania; instead, I was supposed to have been provided with a written request for a review of her status to determine whether she was disabled and prior written notice that afforded me a ten day period to appeal any effort to disenroll her from Medicaid. We never received any of those things. Calling the local Medicaid office proved useless since it was impossible to get a live caseworker on the phone, let alone a person who knew anything about the provisions governing disabled children.

Thus, I spent the better part of last Thursday evening assembling all the documentation that we might need to re-apply for Medicaid for Hallie and filling out the forms at the Department of Public Welfare's website. And on Friday morning, I high tailed it down to the local DPW office to submit all of this stuff in person. Fortunately, we were in the midst of a transit strike in Philadelphia. While this made my life more miserable since it entailed a long walk back into Center City from the DPW office (happily, Sharon dropped me off there on the way to work), it meant that the office was less crowded than it typically is and I was able to get in and out of there in under four hours. And it is a good thing I went in person; not only did it mean not having to risk losing original copies of Hallie's birth certificate and Social Security card, but it also meant that I didn't make needless errors on the extraordinarily confusing (even for me) paperwork that would have resulted in the whole thing being bounced back to us for completion.

So I got the paperwork in, but then the question became: how in the world do I fast track it? That's where my contacts over at the Disability Rights Network and Health Law Project really came in handy. I felt like it was a pretty major victory that we managed to get Hallie reinstated for Medicaid in two full working days: by early Tuesday morning, her case was provisionally approved and her bills were being paid again. It was kind of a no-brainer: Pennsylvania is a very liberal state when it comes to insuring children generally and covering the medical costs of those with disabilities in particular. Both Hallie's global developmental delays and her diagnosis of Autism Spectrum Disorder, for which we have corroborating paperwork, easily qualifies her for coverage. Sadly, this is not the case in many places in this country. But, what really helps is that I am very familiar with the law and with where one must go to find help in making sure that it is implemented correctly. Trying to get this done without intercessors who knew how to contact the proper people within DPW and actually had sufficient clout to get them on the phone, make them pull up Hallie's records and review them on the spot, and then authorize a status change, retroactive to October 31st, would have been, as Hallie likes to put it, "very too hard."

So, all in all, it was a minor hassle and I still have to figure out how to get our out-of-pocket dental expenses reimbursed, but all's well that ends well. And, most importantly, Hallie's teeth are fine and we don't have to put her under for another dental surgery any time soon. But I definitely could have done without the drama and the wasted time and the crisis mode into which this little event thrust us.

The Mother of All Posts...Part One: Surgery

I've been meaning to get to this for over a week now, but once more real life has gotten in the way of blogging. Apparently motherhood of 2 kids--one infant and one with special needs--trumps spending time on the internet. Sigh.

Anyway, before people stop reading this blog/think I've gone on the lam, here goes. Please note that there is no particular order to this post. I just need to get it all out there before I forget the events of the past ten days or so.

So, when I last left off, we were awaiting, with some dread, Hallie's surgery. Happily, all went well. Hallie responded quite well to her "giggle juice" cocktail (this is a mix of versed and tylenol; apparently the former is supposed to enable them not to remember the no doubt traumatic events of IVs and breathing tubes being placed). We, of course, felt like cads for duping her (she was so excited to get in the car early on the morning of the surgery and to play in the waiting area). But really it was the only option. The dentist who actually performed the procedure was fabulous. I'd go to her in a heartbeat (and send Hallie to her again) if only one could actually specify which dentist one wanted to see when visiting the Penn Pediatric Dental Clinic. But maybe we can try to make an appointment when she is the attending on schedule when we visit for our next check up and cleaning. Anyway, Dr. W. was sweet and sympathetic and was horrified when we told her that the first dentist whom we saw in Philly wanted to papoose board Hallie to get the job done. Dr. W. said that she had not used the thing in 9 years and that she had even had parents request that she use it since then but she refused because she found the papoose board an unconscionable device. So we left Hallie feeling like she was in good hands.

The GI scope was first and Drs. J. and L. came out to the waiting area very quickly to report that they could not visualize any reflux-related damage in Hallie's tummy and esophagus. This was good news. But of course they took the six biopsies to culture to see if there were increased allergic cells (eosinophils). We got the results yesterday and we are happy to report that there is no sign that Hallie has EE. So that's a huge relief. We knew that she has been doing better, vomiting wise, on her diet but that's not necessarily enough evidence to prove the lack of EE; only negative biopsies accomplish this. (By the way, we are now up to 33 days that are spew free for the year. February has been rougher than January for some reason--maybe ear infections?--but Hallie's only had one incident since last Thursday, which is great). Anyway, it's clear that she's fine on her current diet of goat milk, pears, apples, prunes, plums, wheat, and fish (she likes fish sticks and . The wheat products that she has been eating include minute quantities of bread; the breading in fish sticks -- her record consumption at one time is up to 2, but it's more like 1, under some duress; pasta (again, a record of 2 pieces of penne or rigatoni, but half a piece is more typical); vegan tomato pie (crumbs so small that they hardly warrant mentioning); graham crackers (I think she once made it through one); and our great success story, honey frosted puffed wheat (I am pretty sure that she made it through a half serving, or half a cup, of this today). She has also been an eager consumer of between an eighth and a half of an oreo (really a Paul Newman's version of this) cookie. And she's eating small quantities of mango and pineapple and sweet potato in her Stage 2 purees.

None of this is going to win her any eating awards (I am pretty certain her caloric intake is down and that she uses more calories eating this solid food than she takes in---we are talking an hour and a half for a couple of fish sticks and fries). But her variety has really picked up and is now beginning to resemble something akin to a normal diet. And I am less bored by the constant pear/apple/prune/goat cheese rotation that we were on. On the downside, the quantity of Hallie-inspired food in our freezer and fridge is now much greater and we still waste much more than I am comfortable throwing out, particularly in these lean times. But, then again, I am not willing to eat a pre-slimed half oreo cookie, either!

We did have a bit of eating regression earlier this week, to the extent that not only I (of little patience) found myself frustrated in a way that I have not been in a while, but even Barbara, the fabulous feeding therapist, was sweating bullets during our Tuesday session. It did not seem to be related to Hallie's surgery (which I will return to in a bit) since Hallie bounced back from that pretty quickly, so I was beginning to think that it was related to Lea's arrival. And that might to some extent be true, but the real cause appears to be the poking through of Hallie's 2 year molars (at least she's getting these while she's still 2).

Anyway, back to the surgery: onto the ear tubes. No biggie. We love them and they probably are helping with congestion and vomiting.

And finally: the teeth. As everyone who reads this thing knows, Hallie still drinks a bottle (and will probably be doing so for the foreseeable future so that she gets in sufficient calories every day). And to say that she vomited a lot during her first two years would be a vast understatement. Neither of these things are good for one's teeth. And microprematurity further complicates matters (being on TPN often leads to problems with teeth later on in the game). So lots of things were ranged against Hallie. The dentist, as I mentioned above, was really sympathetic and wanted to do everything that she could to save all of Hallie's teeth. They suspected that several would require capping and even more would require filling and sealing. Only a decent set of xrays (which the first evil dentist we were visited was not even going to bother doing) would tell the whole story. So, they put Hallie under and once the other procedures were completed, got to work. Surprisingly, the xrays did not show quite as much decay as they suspected. They cleaned Hallie's teeth and were able to get away with sealing and filling all but one of them. On the downside, however, the one tooth that really did require a cap was too far gone to save. It literally fell away as they were working on it. So now Hallie has a gap in her smile. We knew this tooth was in horrific shape because we watched it disintegrate before our very eyes (this is quite disturbing to see). The permanent tooth should not be affected, though, so as long as we can get her off the bottle (someday? if only you could have a rational talk with your two year old who hates to eat about why they need to drink their milk out of a cup and while awake we might get somewhere. As it is, she doesn't mind drinking out of an open cup and actually is fairly skilled at it---it's just that these cups contain ice tea (unsweetened and decaffeinated) or something else that we are drinking, and not her milk). Anyway, the abatement in vomiting will certainly help and we'll be getting her teeth cleaned every three months, even if it kills us (which it might well do). But at least she is happy to let me brush her teeth daily now.

Whew! It took several sittings to finish that .... I think I need to break this thing up or I'll never post anything again!

Meanwhile, here's a few pictures.

Hallie recovering after her surgery:


Hallie eating an Oreo cookie at the Please Touch Museum:



The last time she had one of these was right after her scope in August 2007. And odd coincidence. And last night (Feb 27), Hallie did actually pretty much finish a whole one of these. Minus the part ground into the carpet, of course.

And here's Hallie 'eating' pizza (sans cheese):

 

One to two mouse bites (actually, smaller bites than those which our mice take) are all she can muster right now. But she does like the concept of pizza, at least. And, in a minor triumph, the kid did make it through the better part of a single chicken nugget (gotta watch these--lots of potentially sneaky ingredients in many brands) last night with no apparent adverse effect. Hopefully we'll get chicken back as a protein.

Finally, given the recent FDA warnings about Reglan, we're going to try to wean Hallie off of this to see if it makes a difference. Our hope is that it does not. Her current dose is 1.8 ml four times a day, and so we are going to go down to 1.5 ml three times a day. If her delayed gastric emptying does not get worse, we'll drop it down from there. Meanwhile, we'll be stewing and pureeing even more prunes around here in the hopes of using those to speed up the process. As far as I can tell, there are no concerns about tardive dyskinesia where prunes are concerned!

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!

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!