Expressing Feelings

Last week, Hallie came down with her first cold of the season--you know, the kind you pick up from hanging out with a million other kids at preschool who are leaking snot (and a few who apparently have contracted pertussis).  Sharon and I were crossing our fingers (and leaving little white marks and dents in our hands) that this seemingly run of the mill cold (which affected all of us, but Hallie worse than the rest) would not morph into pneumonia, as all of Hallie's colds have for the past year.  We were religious about keeping up with Hallie's breathing treatments (Hallie actually started to request her 'puffers' whenever she was having problems breathing), monitored Hallie's temperature very carefully, counted her respiratory rate on a regular basis, and made sure to take heed of any sign that Hallie was in pain. (We are still kicking ourselves for not having paid attention to Hallie's complaints last December/January that her back was hurting since we might have been able to avoid hospitalization for that first very bad pneumonia had we only realized her lungs were inflamed a little earlier than we did).

Anyway, we were a bit on edge, but everyone pulled through and her cold is apparently getting better right on schedule (that is, 7 to 10 days after she first exhibited symptoms of it).  So, between our vigilance and a booster shot against pneumonia, we're out the other end of this thing.

Of course, no cold around here is complete unless it is accompanied by some vomiting.  Vomiting has turned into a quite rare event for Hallie (I think we can still count the number of times she's upchucked this year on 3 hands, but honestly one indication that she's not vomiting anymore is that I'm not counting the times she does anymore, either).  Since we don't really expect Hallie to hurl, we're a bit out of practice when she does.  This became a bit of a problem last Saturday when I went to lie down next to Hallie because I did not like the way she was coughing (horrible deep coughs in her sleep with an alarming rate of frequency).  Not long after I decided that I needed to be closer to her, she had an uncontrollable coughing fit and one thing led to another.   I quickly found myself trying to locate the bucket that still resides under the bed in the hopes of catching the inevitable return of dinner but was just a moment too late.

So we found ourselves lifting a soiled and upset half asleep little girl out of bed; stripping off her shirt; changing out the sheets, pillowcases, and comforter cover; and removing her beloved green fleece froggy blanket.  I quickly threw everything in the wash and we got new linens on the bed and Hallie back in it within a few minutes. 

Hallie slept in on Sunday and was not quite herself.  She seemed a bit sullen and subdued, but who wouldn't be given that she was nursing a cold and had had her sleep interrupted?  Sharon decided to download a few movies for Hallie from Netflix and we sat around watching them with her.

One of the movies Hallie chose was The Adventures of Elmo in Grouchland, which is one of our friend Taylor's favorite flicks.  Hallie hasn't really watched Sesame Street in over a year now, but she and Lea (who doesn't really watch Sesame Street at all, but who somehow knew how to identify Elmo from the moment she was born) like Elmo a lot.  Hallie has long known the songs featured in this film since we have a DVD of them (and used to use that DVD as an incentive to get her to eat), so we figured this would be a good choice of films that would appeal to both of our kids. 

The plot line of the film involves Elmo losing his blanket in Oscar's trash can (after refusing to share it with his best monster buddy, Zoe), and then having an evil villain (nicely played by Mandy Patinkin) snatch the blanket and refuse to give it back.  Elmo valiantly tries to retrieve his blankie and faces down creatures like a giant chicken (clearly Big Bird's evil alter ego) who attempt to eat him and (spoiler alert) finally prevails and all is set right when Elmo learns to share.  In other words, the plot had an easy story line with a good moral lesson to it, and a whole bunch of song-and-dance routines and some scary bits mixed in to keep the whole thing suspenseful.

Now, it's never clear to us what or how much narrative plot line Hallie comprehends.  Hallie is very, very bright and knows thousands of words and concepts; loves to analogize; and is extremely curious about the things that surround her in the universe.  She always wants to know what things are called and she likes to categorize stuff (shapes, animals, machines, colors, etc).  She wants to know the names of people and not just of stuff (watching baseball with her is a bit of a challenge because I cannot always identify the players for those annoying teams that don't have last names emblazoned on the back of their jerseys...yes, New York Yankees, I am talking to you!).  And once you tell her the name of an object, animate or inanimate, she will know it forever and ask you to quiz her on it (every time Jayson Werth comes up to the plate, Hallie turns to me and asks "what's his name?" and then I'll respond with "what's his name, Hallie?" and she'll retort:  "That's Jayson!")

But despite this quirky knowledge base and her curiosity about the universe, Hallie still has trouble following along with the narrative development of a story.  Even though we're constantly acting out the three little pigs, Hallie hasn't mastered the lesson that pigs should take care to build houses well (and not out of straw and sticks because they want to play) if they are to stave off the advances of wolves with good lung capacity.  The big bad wolf is neither big nor bad in our world:  he plays with the pigs and he romps with Little Red and appears to have forgotten entirely about his mission to make a tasty dinner of bacon with a side of granny. 

On the one hand, it's comforting to think that Hallie's universe is not complicated by questions as to why so many children's tales are so ominous and foreboding (if you want an answer, read the fabulous essay on Mother Goose tales by French cultural historian Robert Darnton in this book).  Nevertheless, it is simultaneously also somewhat disturbing to us that, on some fundamental level, the complexities of human emotions and social relationships in all of their complexity (even when rendered by monsters and animals) seem to elude Hallie.  We don't know what she thinks or feels about these things because she doesn't really tell us.  She has learned to look for clues about sadness (overt crying) or happiness (smiling and laughing) and can respond accordingly -- sometimes this is spontaneous (she'll notice Lea is crying and offer her a band-aid or even a hug) and sometimes prompted (she won't notice the crying and has to be cued to look at Lea, see what she's doing, and try to figure out why she is doing it).  But she never asks why Lea is crying (even when something Hallie has done has made Lea cry) or whether Lea wants a hug or a band-aid.  She just accepts it for what it is, responds in a fairly narrowly scripted way, and moves on.  Likewise, even when Hallie is clearly upset about something or feeling ill, if we ask her, "Hallie, how do you feel?" she will respond on the vast majority of occasions with "I feel happy!"  She clearly is not happy, but she expects that this is the right response and gives it to us as a result.  It's hard (read:  impossible) to manage to figure out how to teach a child about causality and consequences (which are higher order thought processes) under this set of circumstances.  The whys and the becauses elude Hallie (which is why we have only heard Hallie ask why exactly once in her life).

All of this brings me back to Elmo and the tale of his stolen blankie.   When Hallie watched the film, she got visibly upset and began to cry.   At first we weren't sure why.  But then Hallie told us why:  in somewhat labored (it involved some stammering) but completely spontaneous language, she told us that Elmo felt sad because her blankie was gone.  At first we were confused.  Hallie has pretty atypically typical pronoun confusion (the genders elude her entirely and most of the time her choice of pronouns seems to be guided by uneducated guesses), so we thought she was somehow confusing 'he' and 'she' and assigning the wrong pronoun to Elmo.  But she wasn't.  A few minutes later she clarified the situation for us:  she was upset because Elmo lost his blankie, and she empathized with Elmo because she had also lost her blankie (I played the villain who snatched it in real life) and she wanted them both to get their blankets back. 

Alas, Hallie's needed a second cycle in the dryer, so the little red monster got his back first, but I made sure that I did everything I could to return Hallie's to her as quickly as possible.

We're never sure around here whether this is indicative of an imminent breakthrough in terms of Hallie's comprehension, capacity for empathy, and social skills or whether this is one of those one-off events (like the sole why we heard eight months ago).  But it is heartening to know that she is beginning to make connections around feelings, and not just categorizing stuff. 

Lea's New Skills

This week, Lea learned how to clap her hands. While we did a bit of coaching to teach her this new skill, it was far easier for her to learn how to do this than it was for Hallie. One of the moms on a listserv to which I belong noted that full-term younger siblings of micropreemies practically raise themselves. We definitely concur.

So, we can add to Lea's skill set hand clapping to playing peek-a-boo; crawling like a demon; cruising on furniture; eating pretzels and graham crackers with aplomb; and chasing after and securing any item her little heart desires. She's also a championship-level pincher and biter (mostly of Sharon), but I'm no sure we want to celebrate these aspects of her character.

Anyway, I caught a video of Lea clapping in her swing (with shameless prompting by yours truly). Hallie wanted to get in on the act, so I took some footage of her using the chair in our living room as a trampoline. She is very resourceful about finding ways to meet her vestibular and proprioceptive needs and we are happy to indulge her (especially considering that we never intend to move with the living room furniture. Why not let her trash it? It's not like we have room for a trampoline and so Hallie is happy to call this her trampoline and let us know how much she loves jumping on it).




On other Hallie fronts: somehow I missed this milestone, but Hallie has now had 203 vomit-free days this year. She's been great, really. She's eating (grazing, mostly) quite well these days. She had had a cold ten days or so back, and her intake plummeted, as it does for most kids, but she's making up for things now. She loves toasted bread with butter, requested a sandwich (which, for her is toast smeared with spreadable goat cheese) last night at dinner time and actually ate about half of the half-slice of bread and cheese that I presented to her; and she's eating chicken hot dogs again. We've taken the pressure off of her, and us, and that has been a good thing. Snacking in front of the tv or while playing is not precisely our idea of a family meal, but at least, this way, Hallie does come running over to the table and gladly takes a seat with us when our friends come over to dinner (apparently, the two of us eating alone, or the two of us plus Lea in her high chair don't make the grade for Hallie). And not only does she come running over to sit with us, but she will request some food items (chocolate cake or cookies are her favorite). So, right now, this is enough for us. We need to take it slow and did I mention that a decrease in pressure is a good thing?

Still working on that long post of how far Hallie is coming along...

Another Let Down

Well, my hunch and fears have materialized: Hallie's excellent PCA (Personal Care Assistant) has, indeed, quit on her. I sensed that something was up when she did not call me back after not appearing at school last Friday. It took until Sunday afternoon to track her down, and when L. picked up the phone, she sounded distant and a bit odd to me. Trying to give her the benefit of the doubt, I chalked this up to her 18 month old daughter being very ill and accepted her excuse that she was too busy to call me in advance to explain that she would not be attending school with Hallie on Friday. But this did not really explain why she did not return any of my calls to her. She told me that she would know more on Tuesday and call me then.

Since Hallie had school today, I couldn't drop the ball and not contact Elwyn this morning to let Hallie's service coordinator know what was up. We at least needed to locate a substitute to attend school with Hallie on Tuesday and Wednesday and perhaps the rest of this week while L.'s daughter was still hospitalized. So I was on the phone, leaving messages for Hallie's service coordinator and her supervisor bright and early this morning.

The service coordinator finally got back to me around 11 am and promised me she'd track down the person at the placement agency responsible for securing a PCA for Hallie. (Yes, there are A LOT of middlemen in this process and that is part of the problem. On the one hand, it means that a lot of phone tag is involved in the process and, on the other, I am sure that it means that the PCAs themselves earn a whole lot less than the agency receives for their services).

Anyway, I heard back from her at 2pm (an hour before Hallie's school day begins on Tuesdays). She informed me that L. had taken a permanent job and that the agency representative had put out an emergency call and found a replacement for L. who was "very reliable and had been with him for years." She will be starting tomorrow, to work with Hallie "indefinitely."

I hate to parse words (well, not really; indeed, much of my professional identity revolves around parsing words), but I have some reservations about the use of the terms "reliable" and "indefinite". Pardon my considerable skepticism, but I will believe these things if they come to pass (notice my reluctance to use the phrase "when they come to pass").

So, tomorrow, we will need to meet someone new and I will have to pass off Hallie to the care of yet another someone who does not know her. I will have to "train" this person (the official mediation agreement includes a statement allowing four hours of training for each new PCA but this never happened with A., the first PCA, because she flaked on us very quickly or L., the second, who did not require training because she "got it.") And I will have to pray that this new person is 1. sensitive and decent and deals well with Hallie, who is, thankfully, very easy to deal with 2. does her job correctly, which not only means standing back and letting Hallie do her thing and intervening to redirect her when needed but also helping to facilitate Hallie's communication and socialization with her peers and growth more generally. Oh yeah, and I hope she actually does show up and other basic stuff like that.

We are very disappointed. L. really was a good PCA and it was during her brief tenure with Hallie that Hallie experienced huge social growth. She also was getting the potty training thing underway. And Hallie loved her. And, like so many others, she has just disappeared on Hallie without a trace or so much as a good bye.

Hallie's teacher was dismayed when I told her about this when I dropped Hallie off to school today. The YCCA has been great: they have bent their sensible rule for Hallie so many times (the director quite rightly believes that a real education for Hallie right now involves Hallie having a one-on-one support/shadow person and technically we need to keep her home if the aide fails to materialize). Ms. Kerry, Hallie's teacher, was fine with Hallie attending today (and last Friday afternoon) without a one-on-one, but it makes things harder for them and for Hallie. Ms. Kerry could not believe that someone who cared about kids would just drop the ball on one of them. The least the aide could have done was given us notice and Elwyn time to find a suitable replacement. I do understand the economics involved and that it is better to have a full-time job than it is to have several part-time positions, but the way that L. handled things was simply and purely unprofessional.

We are so grateful for the YCCA: the teachers there are all caring professionals who put the kids first. We are very happy (and relieved) that we chose to place Hallie at this school and fight the good fight with Elwyn over this. Even though the school is more expensive than the "free" alternative with which they would have provided us, we are more than happy to have the headache of absorbing the extra cost since we know that our kiddo is safe and well cared for at the YCCA. I don't even want to imagine what might have happened to Hallie had her PCA gone AWOL at the reverse mainstream "free" school or even a Head Start program with teachers who are less caring and in control and where Hallie is just another kid with special needs who cannot articulate her needs and who therefore doesn't count (and who cannot tell on them).

Despite L.'s absence, Hallie had a great time at school today. She was eager to go to "fun, fun preschool." She woke up from her nap and told me "I go to preschool now" and got her shoes on and raced out to the stroller. When I dropped her off, she ran to join her friends who were in the playground and said hi to each one fo them personally. While I was talking to Kerry, she grabbed a ball and initiated a game of catch with one kid, hopped on a trike and rode that for a few minutes, and went off to talk with another clump of children. She had a great time and only experienced a rare two minute meltdown at 5:26 when one of her best friends was picked up by her daddy (I came in right after Ella left the building and Hallie was fine again). The meltdown was no doubt related to Hallie's exhaustion and lack of napping over this long holiday weekend. Getting her back on her schedule will help enormously with short-circuiting this rare meltdown stuff.

In other Hallie news: yesterday Hallie stubbed her toe while running through the dining room and ran over to us saying "My foot hurts!" We were thrilled at this. I know this sounds strange, but this was the first time that Hallie was able to articulate that she was hurt and what part of her body, specifically, was ailing her.

Hallie also had a phenomenal Floortime/DIR session today. She was chatty; closed many, many 'circles of communication'; and exhibited a lot of engagement with me and Steve, her psychologist. Steve and I were both extremely impressed with her.

Eating is so-so, at best. But she has not vomited at all lately (yes, I will probably regret this disclosure) and we are now up to 176 days of spew-free bliss.

Brief Preschool Update

No photos tonight, alas. But I just wanted to update how things have been going now that Hallie is back in the classroom after her brief break of three days last week.

In a word, she's doing GREAT. Last week, during the break from school, there was a group orientation session with the two teachers who will be handling the youngest kids in the preschool and I got a chance to talk briefly with Ms. Kerry, one of Hallie's current teachers. I asked her how Hallie was doing and she had nothing but glowing things to report. From her perspective, Hallie is making a very easy transition to life at school and has really held her own. Hallie's favorite subject is music and she's a major contributor to the song and dance routines that they do (and this is, not surprisingly, the session during which Hallie is most vocal. She loves to sing and has even begun singing us the songs they teach her in class with which we are unfamiliar). She loves the instruments, too, and always races to the piano to play it during class. This is a good thing because they're going to start teaching the little ones basic piano skills this coming year. Hallie will really enjoy it, and if she continues to exhibit deep interest in music, we'll try to enroll her in a Suzuki piano or violin class once she turns four. Anyway, the only negative behavior, of sorts, that Hallie exhibits is a marked penchant to run back into the music room even when it is no longer her turn to participate in music.

Hallie has been great at following directions and is getting very good at lining up with the other kids and waiting quietly for her name to be called to go to the next activity. She needs very little redirection at school at this point in the game and is not only demonstrating an independence of spirit but also a very good capacity to follow the rules and executive motor planning.

After all the buildup we gave them over her eating issues (which remain considerable at home), they weren't sure what to expect, but Hallie has really taken to the new school routine. Indeed, on several occasions Hallie has raced to the table to sit down and eat even before her food is ready to be consumed (which has led to a couple of incidents where she tries to sample other kids' lunches. Who is this kid anyway? She won't try anything new at home). On Monday (the day that she returned to school), Hallie's OT and PCA let her grab her own bag and sit down. Hallie opened the zipper herself, opened all of the containers, asked for help unwrapping and inserting the straw into her juice box (after trying in vain to accomplish this task on her own), ate about half of her pizza slice and a few bites of everything else in the lunch box, and did all of this in the stipulated half hour. The OT and PCA just stood back and watched. And then the OT called me all excited and sent me a couple of snapshots that she took with her Blackberry).

And, on top of all of this, Hallie is communicating and interacting with her peers a whole lot more right now. Last weekend, she tested out the phrase "C'mon guys/mommy/mama/etc, let's do 'x'." She's been doing this at school lately too and this is helping her make friends more easily. When I dropped off Hallie at school on Monday, one of the little girls who likes Hallie a lot (according to the therapists and PCA who report such things to me) was just arriving with her mom. When Hallie saw her, she ran over to her to say 'hi' and the little girl turned to her mom and asked, "When is Hallie coming to my house to play?" And this little girl is not Hallie's only friend, either. Apparently Hallie has two close friends named Ella and Elinor. When Hallie arrived at school yesterday, Ella asked Hallie to sit down next to her during storytime. And today Hallie played in a little posse in the schoolyard with Ella, Elinor, and a boy named Connor for quite some time.

The teachers and therapists have all taken note. This came in handy this week when Hallie's excellent PCA had a medical emergency with her own daughter (who is 18 months old and has severe cardiac issues. The PCA was checking her into CHOP for testing in order to get at the bottom of what is going on with her daughter. The PCA's mom is flying in to help but she couldn't get to Philly until tomorrow). Anyway, Latasha gave me advance notice and I was able to rearrange Nadia's hours so that she could accompany Hallie to school part of the time yesterday and the day before. But Nadia had other obligations on Tuesday and had to leave early. The teachers were fine with this and it gave them the opportunity to see how Hallie fares on her own. Apparently she did great. So, today, the teachers told Nadia that it was fine to leave Hallie on her own. Judging from the fact that Hallie was off playing quite happily when I arrived today and did not even notice my presence in the room for a few moments, it seems that Hallie handled this quite brilliantly.

Anyway, we're really proud of Hallie and how well she's handling school. And we're proud of her new language skills too. Tonight, at dinner, Sharon asked Hallie to chew her food fast and Hallie responded, "I chew slowly!" We're not sure where she learned adverbs, but somehow she's picked up these (and so many other rulers of grammar) quite easily.

OK--that's all for now, except to note that we're now up to 153 days without vomit this year. And since last year our total number was 154, I think it's safe to say that we're going to set a new record this year!

Birthday Countdown

Unbelievably, Hallie will be turning three in two days. I am not sure where the time went (and I am quite frightened that we are now a mere 13 years away from her getting a drivers' permit...if her navigating and safety skills with her toy vehicles are any indication, watch out drivers!)

Anyway, we spent part of Saturday procuring Hallie-friendly food for her birthday bash. If you recall, last year the only thing she could eat that we had at her party was Lesser Evil Potato Sticks in Sea Salt flavor. This year, our shin-dig will feature Oreo cookies, Lays potato chips, watermelon, and pizza (we'll get regular pizzas for the masses and have commissioned a pizza with goat mozzarella from Whole Foods for Hallie so that she can enjoy as much of it as she would like). And our lovely friend, Sara, whose hands are already full (she is a NICU nurse and mom to three-year old Charlie and three-month old Aaron; she makes and sells lovely burp cloths (Keiki cloths) previously mentioned by us on our blog; and is a wonderful photographer who took some gorgeous shots of Lea as a newborn) has volunteered to make Hallie a birthday cake. We're still using allergy-friendly stuff (meaning no egg or cow dairy in it) because we're still not sure how well Hallie responds to those things, but we do know that, at least conceptually, Hallie loves cake. I bet that Sara's beautiful giraffe cake will go over very well with our girl.

Hallie is definitely getting into the birthday spirit. We've been asking her how old she is for a while now and she has consistently responded "two." Lately, we've also been inquiring how old she is going to be and she gleefully retorts: "three!"

Hallie has also finally learned how to blow (sort of...she has blown conventionally by rounding her mouth several times but cannot do this on command. Instead, she bites down on her lower lip and spits out some air. Amazingly, this does the trick and she can extinguish flames of candles that way). We've been practicing the Happy Birthday song and blowing out candles with her all week and she's been doing super at it.

Anyway, we think she's excited about her big day and we're fairly certain that she understands what it entails this time around.

On other Hallie news, she's also doing a whole lot of new fun stuff (some of which makes us really happy and others of which exasperate us no end). In terms of the former, she's been doing a lot of pretend play. On Saturday, while we were in Superfresh buying supplies for Hallie's party, Hallie kept asking for chips (she says, "a big round one!"). We happily indulged her requests and she munched her way up and down the aisles as we tossed stuff into the cart (this was a major improvement over our experience in Toys-R-Us, when she tossed all sorts of random stuff we didn't need and didn't wish to buy her in the cart for us). One of the chips Sharon gave her was more heart-shaped than round, which Hallie pointed out to us immediately and then burst into a chorus of "Love" (by Rachel Coleman, and easily among Hallie's favorite songs). Once the singing was over, she began to feed the chip to her Count plush doll (of Sesame Street fame), who kept saying "yummy, yummy, yummy" as the potato chip crumbled in his mouth. Then, rejuvenated by the snack, Count began to fly (he does, after all, have a cape) and Hallie narrated "Count is flying!" as she made him do so.

Today, she showed off her prowess with verbs while she used her mallet (from her doctors' kit) to bang some imaginary nails into her Melissa and Doug dollhouse. She turned to me and said with pride, "I build a house!"

And, finally, my favorite Hallie-ism of the day: she's been walking around all day saying "I spy with my little eyes..." and then filling in the blank with whatever she sees at the moment. This evening, she looked through the hole of her smiley-shaped potato patty and said "I spy with my little eyes Mama!" There's no question: I was very happy to be spied by her little eyes.

So, yeah, on the eve of three, Hallie is pretend playing and speaking a whole lot more. That's the best birthday present we could imagine receiving from our no-longer-so-little-girl.

Sorry about the lack of pictures, though. I promise to try to take some later in the week. But one last update: we're up to 107 days without vomit. Hallie does seem bored with some of her foods but disinterested (or even hostile about) trying new ones, not to mention drinking her milk (she does, however, like to eat the silicon straws that come with her insulated Thermos bottle, much to our chagrin). But she's been eating well enough and drinking okay enough (marginally) and keeping everything in with no real problem. So we are thankful for that, too.

A Hundred Days in May!

Yes, folks, we actually hit that milestone today.  Woo hoo!  For those of you not following this thread of Hallie's story, this means that she has had a 100 spew-free days this year.  100 out of 148 days doesn't seem to bad to us, particularly in comparison to last year, when we only hit this milestone at the very end of August, or the year before, when we never even came close to this milestone (back in 2007, I think we had a grand total of 16 days without vomit).  Anyway, we're thrilled and we hope that our saga of decreasing paper towel usage and emergency middle of the night bed stripping and trips to the washing machine will provide some hope to parents (and kids) who are still in the midst of vomit hell.  It can get better.  

Hallie and Lea had a great day all around.  Hallie has really been into trying to draw her own hand.  This started on Monday when I traced her hand on construction paper as part of her mealtime distraction.  She thought that was wonderful and insisted that I do this many many times in many many colors.  On  Tuesday, she grabbed some paper and crayons and brought them over to me during playtime for a repeat performance of hand drawing (she was not all that thrilled when I tried to turn a brown hand into a turkey in true preschool instructor form, but that's okay since we're a long way off from Thanksgiving still).  Then, when I had to stop drawing with her to take care of Lea, she grabbed a crayon and attempted to trace her own hand.  Today we tried to teach her how to go around her fingers with the crayon and she did a pretty good job of it.  

Hallie also had a grand time painting and then finger painting during Early Intervention OT.  She really loves to paint and must have spent at least ten minutes of uninterrupted attention on this today.  She was particularly fond of us painting her hands so that she could make lots of handprints on the paper and very quickly figured out how to paint her own hands.  Ultimately, she was a big mess, but a happy one, and I do have to remember that we need another IKEA stepstool so that she can wash her hands at the kitchen sink since going up our steps to the bathroom would have tracked paint everywhere.  Hallie still cannot climb the stairs holding onto just a hand or a banister--she needs both--and crawling would have left lots of handprints on the risers of the steps that would have been a pain to clean up (even with washable paints).

One of the things that was really interesting to me is that Hallie ate VERY well after finger painting.  She downed an entire hot dog (without skin), a bunch of cheese, quite a bit of watermelon, some prunes, and a couple of ounces of milk within a half hour or so and with no protest.  She still needed her usual TV distraction but I wonder if giving her some sensory input that stimulated her tactile senses helped her eat more effectively.  I've got to try this again to see if this is a pattern.  If so, there will be a lot more finger painting around here on a regular basis.

Hallie also did great at private OT today.  Our regular OT was off on her honeymoon, but having an unfamiliar person fill in did not phase Hallie in the least.  She went into the room, took off her shoes, got on the mat, and proceeded to do her swinging-on-her-tummy-while-picking-up-beanbag-animals-and-tossing-them-into-the-barrel routine with great attention.  She also quickly mastered a new obstacle course (crawl through a tunnel, pick up a puzzle piece, climb over a tumbleform, place puzzle piece in the puzzle, and then repeat another dozen times) and even pretty happily attended to a table-top activity (not her strong point, in the least) for about three minutes after that.  The second table-top activity (stringing beads on pipe cleaners) was a bit of a hard sell for her, though.  She was tired, and though she had no trouble with the actual task since she really is using both of her hands bilaterally much more easily these days, she was done with OT by that stage.  It seems like she has the capacity to follow structures for 45 minutes, with some breaks and change-ups, but fatigues after this.  I am not sure if this is because all of her therapies have classically been 45 minutes long or whether it's because she's two, or whether it's because, given her generally low tone, her body gets tired being 'on' all the time.  Anyway, it will be interesting to see how she adjusts to preschool, which is obviously longer than 45 minutes, in a few weeks from now.

Hallie is also beginning to further expand her speech.  Today, as usual (despite injunctions placed on this practice), she climbed up onto the pack and play and grabbed a picture down from the bookshelf that it abuts.  She brought it over to me and said:  "Picture of Lea!"  Of course, it was a picture of Hallie back in the NICU, but pretty much any baby picture these days is a picture of Lea.  She totally loves her little sister and is excited when she sees her or any representation that might be her.  And, if Lea is not with her (for example, when we go off to therapy without Lea), she gets very concerned.  She looks over at the empty carseat next to her and says, "Lea!  Lea!  Where'd she go!"  And, when she wakes up in the morning, the first person she greets these days is Lea.  She'll often climb over me to get to her sister and wave at her and say "Hi, Lea, Hi!" or "Lea, wake up!" (which is usually not what I want Lea to do and definitely not what Lea wants to do at that moment).

Lea, meanwhile, was her super cute self, as usual. She's talking a ton right now and sounds pretty much like a little kitten meowing when she does. I think she's just exploring the different sounds that she can make with her voice, and that is very cool to see (and listen to).  

Lea had a very nice day and was chill throughout all of it, until 10:30pm, when she just wanted Mommy to come downstairs and feed and hold her.  The pattern around here is that Sharon takes Hallie up to bed somewhere between nine and ten pm and spends about an hour upstairs.  Lea's internal alarm seems to go off somewhere around ten and eleven and, after that, she really needs Sharon to comfort her.

And, speaking of Sharon, one of the projects that she worked on back at her old job just won an AIA (American Institute of Architecture) award.  I am very proud of her.

Finally, Sharon called the hippotherapy center down by her family (who live on the Jersey Shore) and hopefully we'll hear back from them soon.  I think that hippotherapy will do a world of good for Hallie and I can't wait to see her astride a horse.

Growing, Growing, Growing

 

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

 

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

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

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

 

 

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

 

 

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

 

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

 

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

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

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

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

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

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

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

 

Just Chillin' in her Stroller

 

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

 

 

 

And here she is hugging Zoe:

 

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

The First Seventy Five Days!

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

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

 

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

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

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

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

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

Testing, Testing, Testing

 

Just a few words about Hallie because goodness knows that it is taking me longer than I'd like to update the blog these days. Through a minor miracle (and some very effective string-pulling by one of Grammy's best friends who happens to work for the Developmental Peds at CHOP down in Atlantic County), we got Hallie in to see the Developmental folks last Tuesday morning for an assessment. The appointment was a long one (four hours, to be precise) and quite taxing for Hallie, but very thorough. A few residents watched her play and did the Bayley assessment again with her and then the pediatrician, who very much 'got' Hallie, administered another battery of tests. The good news is that, in terms of language, Hallie only tests six months delayed (actual) in all respects and is coming up at about 27 months. The bad news is that they cannot rule out ASD (autism) at this point. This is the gist of what the doctor had to say: when you first meet Hallie, she seems sweet and engaging but not terribly bright. Then you begin to spend time with her and watch what she does and find out that she knows quite a lot and that she is not only average in terms of intelligence but very, very bright. She's just not using what she knows terribly well in terms of communication and expression. So the doctor's assessment seems spot-on. Hallie can sight read several words (baby, bus, dog, and Hallie are clearly words she recognizes immediately), can count to at least twenty, knows the entire alphabet and has for a very long time, knows hundreds of words and signs, has memorized numerous books, songs, and tv scripts/plots of her favorite shows (and seems to know which episode contains particular letters of the day, songs, etc). She can follow two part directions pretty well. But her capacity to integrate and utilize this knowledge is limited. While Hallie knows tons of words, it's not always clear that she understands the abstract concepts behind them or how to sequence knowledge. For example, Hallie can identify all of the clothing items and food that one can point to; what she doesn't get is that the items are to be worn or eaten, respectively.

All of this means that Hallie will be is too easily dismissed as the sweet-but-shy-little-girl who sits off in the corner playing on her own. She would absolutely get lost in a school setting, in my opinion, as a result of this (unless that setting were a very small classroom with highly engaged teachers who could draw her out and help her focus on the areas where she has deficits. We are hoping that the preschool afternoon transitional program that we would like her to attend (as soon as she can get a shadow...which we hope comes through) will help her with some of this stuff. This particular school does a lot of work with sensory play and has art and music therapists on its teaching staff. It's in this realm, and not formal learning of shapes, numbers, colors, and letters--all of which Hallie has down--that Hallie needs work.

So the developmental folks recommended the following: an additional test called the ADOS (which involves a therapist observing Hallie at play) and perhaps a separate parent interview to rule out (or rule in) ASD. Regardless of what those tests show, she recommended that we get Hallie into Floortime DIR therapy now. Floortime is an approach pioneered by Dr. Stanley Greenspan (here is a link to one of his books, Engaging Autism which I ordered this week which provides a very helpful overview of how he sees ASD and his approach to therapies that can help with children on the spectrum). His discussion makes a ton of sense to me and seems relevant for a lot of our born-too-early kids who are predisposed to developing autism or the secondary characteristics associated with it. So I'm educating myself and, more importantly, have already set up a therapy session for Hallie for one of the (few) practitioners of this in Philly for next week. The second thing we've been advised to do is to get Hallie into some more occupational therapy, specifically aimed at helping her with some of her pretty acute sensory issues (even if Hallie is not on the spectrum, there is no question that she has Sensory Integration Disorder. Time to locate and dust off our copy of The Out of Sync Child.

Meanwhile, however, it does pay to note this: Hallie is using more and more language every day and she is doing so more consistently to express her wants. Her "I want please Mommy/Mama drink/cookie/up/out/etc, yeah!" phrase is being generalized and varied more (I heard "please Mama drink" today) and is sounding less rote. She is adding in new verbs ("I swing" "I slide") all the time now. And she even came out with a new two-word spontaneous utterance this week: after her bath, as the water was draining out of the tub, Hallie said: "bye-bye water". Hallie's articulation is also clearer. And, in terms of non-spectrumy behavior, there is no question that our little girl is engaged in the outside world and people around her: today we visited the Please Touch Museum with Jake (pics to follow at some point!) and Hallie wanted to show Jake something while we were at the water table ("River Experiences") section. She went off to look for him and when she found him, shouted "There he is!" and ran over and showed him her boat and flashed him a huge smile. She also is missing one or the other of us when we leave the room and now calls out "Mommy! Mommy! Mommy!" or "Mama! Mama! Mama!" depending upon who is missing (she has long experienced awful bouts of separation anxiety, but now she is putting words to her feelings). And she is clearly aware of and engaged with Lea (as the other post I just put up shows quite well).

 

While Hallie does do her fair share of lining up toys, that's not the only--or even primary--way in which she plays with her them. While she enjoys lining up blocks and sorting them by color and shape, she also grooves on building towers and knocking them down, for example. She might line up her Sesame Street figures on the couch, but she also shoves chips and cookies into Cookie Monster's mouth (something I am none too fond of, I must say, since it takes a few q tips to dig out the crumbs). And Hallie has been grooving on the new tea set we just gave her and will pour tea for herself and for us and clink cups and say her version of "cheers" and not just gnaw on the lid of the teapot (which I think poses a major choking hazard and is the primary reason this tea set is rated for the three and over set).

Hallie seems at her worst in terms of sensory stuff when she is tired and overloaded (and large numbers of kids in one space does provoke sensory overload, in my opinion. We saw this at the playground the other day and a bit at the Please Touch today). She doesn't tantrum--or hardly ever tantrums, anyway--but she does shut down and that's when we see her withdraw and focus on things like peeling crayons, chewing on her cuticles, or pulling her hair.

The same sorts of aberrant behaviors come out when Hallie is stressed, which is often while she is eating. So we've tried to make meals more enjoyable (and a bit briefer--now down to 45 minutes, and damn the calories!) Bacon, one food that Hallie loves goes a long way in helping here, too. (When given a choice between cheese and hot dogs, Hallie often chooses bacon and asks for it by name). Speaking of choices, Barbara, Hallie's most excellent feeding therapist, has come up with a plan to give Hallie more autonomy during meal time. Instead of asking her to take bites of what we want her to eat, we now give her options of what food (from a field of two, though Hallie has obviously added a third at times) and how much (one or two bites?). The TV is off during the eating of those bites (which prevents distraction) and is a reward for having eaten them well (though Hallie now sometimes just tries to swallow food too quickly to get back to the more enjoyable endeavor of watching Elmo's antics). This has gone relatively well this week, even with Hallie's second cold this month (she is in the middle of a non-stop snotfest right now, which really sucks, but she is getting better at wiping her own nose).

And since no Hallie update is complete without a tally, here we are: 45 days of vomit free life this year and one new food passion: the insides of Newman's Os or Oreo cookies. She likes to lick out the icing and return the half cookie to us, though I did spy her gnawing a bit on the chocolate yesterday. And she does seem to prefer the chocolate to other flavors: when I tried to give her a Ginger creme Newman the other day, she said "No! Black one!" to me. Let's hear it for food preferences and the language needed to express them!

Hallie's Eating Update

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

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

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

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

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

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

 

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

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

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

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

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



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

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



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

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

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

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

 

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

 

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

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

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

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

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!