How Old is Hallie?

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How Old is Lea?

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Friday, May 29, 2009

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).

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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.

Thursday, May 28, 2009

Milestones, Measurements, Meanderings

Once more my post is going to end up being a great big grab-bag of assorted goodies. I guess I have to face the facts here: there is no way in the world that I can find the time to do more than one post every week (if I'm that lucky).

As usual, it's been pretty busy around these here parts. Our lead up to the long Memorial Day weekend was punctuated by Lea reaching a really significant milestone: rolling over from back to front while on an absolutely flat surface. She'd been working on this skill for days and had figured out that grabbing hold of the toys on her gym mat would provide her with some of the leverage that she needed for the first big flip.

Needless to say, neither I nor Sharon (nor anyone else, for that matter) witnessed the event, which happened late on Thursday night, May 21. I was off in the kitchen grabbing something to drink and when I came back into the living room, this is what I saw:

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Here's a close-up:

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Of course, I flipped Lea right back over onto her back and watched how, within seconds, she was back on her tummy.

What's more, Lea has amazingly good head control; while this is not evident at all in the shots above, you can see what I mean here:

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So, ever since Thursday, Lea spends most of her waking hours (which decidedly are NOT during the day but in the evening and at night) practicing her moves. She has mastered rocking from her back to her side and then onto her back once more but she has not yet tried to go from belly to back. And it often seems that she surprises herself when she lands on her belly and seems to wonder, 'What the heck am I doing here? Why did I do this?' It's all pretty funny.

Of course, even though parents should not compare their kids, Sharon and I have been struck by the fact that we have not had to teach Lea how to perform these moves; she just does them so naturally and effortlessly. And we cannot help but think back on when Hallie was little and how we had to teach her how to position her body so that she could flip over. It took months of practice before Hallie mastered this. Even though Hallie rolled over with some coaching at around three months corrected, she did not really begin rolling until she was well into her sixth corrected month and this with much training. Her next developmental milestones (sitting independently, scoot-crawling, pulling to stand, and even cruising) followed very quickly thereafter, but mastering how her body worked was a major effort for Hallie and a challenge for those of us who helped her along the way (namely, me, Sharon, her special instructor and her occupational therapist). For Lea, these are natural moves and we're getting a glimpse of what parenting your typical baby looks like.

The same is true of language development. Lea is cooing, shrieking, making cute cat-noises, and vocalizing lots of sing-song vowels right now, and often doing this by mimicking us. Sometimes it's not quite clear whether we're doing the mimicking or she is, but what it amounts to is a very rudimentary form of conversation. She has also begun to blow lots of raspberries. We experienced none of this with Hallie, who, between the vocal cord paralysis and her language delay/disorder, was a very quiet baby. Hallie is finally beginning to do quite a bit of talking at home, or at least when she is feeling comfortable, but she's still quieter than your average kid, especially in public. Between shyness, a lack of confidence about speaking (since we really do think she understands that this is a major issue for her, and for us), and her expressive language limitations, speaking -- and especially conversing -- remain a real struggle for her. She will talk now, and she even is using sentences consistently. Most of these are requests ("circle icey please!") or descriptions ("I sign 'tree'") but at least her language is coming in. But skill acquisition and refinement remain so hard for Hallie and something upon which we have to work, work, work. We suspect that this will be far different for Lea.

Speaking of Hallie and skill-building, we had our IEP last week. The meeting itself went more smoothly than I thought it would and the team that the Local Educational Agency (Elwyn) assembled seems pretty good. My preparation of IEP goals, with the assistance of Hallie's speech and occupational therapists, did provide some good guidance and, with the exception of several sticking points, the IEP itself is fine.

Nonetheless, these are important sticking points. Some of the goals specified, particularly by the Special Instructor, seem to be set too low. For instance, one of the goals is that Hallie will use social greetings with adults without prompting. Hallie is basically doing this already and has little problem saying "Hi so-and-so" when she sees so-and-so. What she cannot do is take the conversation to a meaningful level beyond that. That should be the goal upon which to work, and not social greeting.

Likewise, Hallie is already following one-part commands with little guidance (as long as you get her attention) and this should not be a goal (as it is now). Rather, she has more problems with two-part-related and unrelated commands. She can do the former fairly well and the latter not at all. These should be our goals.

Not all of the IEP goals were low-balled, but we do need to correct the ones that were. And we need to have her re-evaluated for Physical Therapy sooner than four months from her 3rd birthday. This is a major weakness for Hallie, and unfortunately she has had no PT service at all thus far. We are unsure that twice monthly PT visits are sufficient and need to know whether it's essential to step these up in terms of frequency sooner than September or October.

The real sticking point, though, is procedural. The LEA never explored placing Hallie into a publicly-funded regular preschool situation and came into the IEP meeting with a sole placement in mind: a reverse mainstream school. The IDEA stipulates that the LEA is required to explore a continuum of placements beginning with schools for typically developing children and only moving down to programs that are more restrictive if it's impossible to place her in a program that is less restrictive that is appropriate for her educational needs, even if she requires supports in that program. That never happened. We did try to get Hallie into a Head Start program down the block that seems very good (has dedicated classes in movement, music, and art each day that are taught by specialists in these fields, a very small classroom for beginning students, etc) but the program is full and, while Hallie is number one on the waiting list by virtue of her disabilities, it's not likely that she'll get into that program. For various reasons, we do not want Hallie in the program that is the more restricted environment, and we did a lot of legwork to find her a placement in a private program that is geared toured typical children but inclusive (and very supportive) of students with IEPs, but given that the LEA fell short of fulfilling its legal mandate, our goal is to see if we can get it to defray the cost of the private program. I'm not sure how far we want to go in pursuing this but it's worth a shot, at least. Hopefully we'll be able to resolve this all relatively amicably before Hallie needs to start school, but the special education/IEP saga continues for now.

One last update before I call it a night: we took both kids in to see the pediatrician today and Lea weighs 12 lbs, 9 ounces and is 24.5 inches tall. She's at around the 40th percentile for height and about the 25th for weight. Thus, she's not much bigger than Hallie was at this age (at just over four months, Hallie weighed 12 lbs. 9 ounces). That sort of surprised me.

Hallie weighs an even 31 lbs (but this is with a dry diaper on) and is 37.5 inches tall. She's just around the 60th percentile for both height and weight. It's nice that she's caught up in something!

We were a bit disenchanted with the ped today, and not only because the office visit took two hours and both kids were distraught by the end of it (and Hallie ended up missing her nap as a result of all of this). He seemed dismissive of our concerns about Hallie's development and suggested only that we should throw her into a typical preschool with no supports at all to see how she does. He doesn't seem to get Hallie (in contrast to the Developmental Ped, who totally got her). As Nadia pointed out, Hallie shuts down when overwhelmed and she finds little more overwhelming than a big room (or schoolyard) full of kids running around. Shutting down won't help her language, or any of her other skills, in the least. She's not going to just start having conversations because other kids are having them and she's not just going to start eating three square meals, two snacks, and two cups of milk because that's what other kids do. As our Developmental Ped noted (and as the story about rolling over with which I began all of this suggested), Hallie needs to be taught skills, she needs to rehearse skills, and she needs to trust her environment in order to practice her skills. A lot of good things are happening right now in terms of her development because her Floortime DIR therapy (and our use of it and the Hanen method at home) are really empowering her. She's surrounded by people sensitive to her interests who are helping her close conversational (and gestural) communicative interactions. We are hoping that her Special Instructor, Speech Therapist, and sensitive preschool teachers who are aware of her delays and issues will build off of these interests in assisting her negotiate the communicative challenges she will face in preschool. These supports are not gratuitous and won't label her so much as help her catch up (at least that's the plan).

Our ped is worried that these things will stigmatize her. He is similarly worried that not eating ice cream will be a source of stigma and that getting her checked out by a Ped Neurologist to see whether she has CP could stigmatize her. This is something that I am increasingly concerned about since Hallie's gait and run are very awkward and unnatural looking; Hallie falls a lot and cannot negotiate stairs even with the support of a banister and sometimes even with support of a banister and a person holding her hands. And I cannot begin to count the number of times I've heard the phrase "well, she has low tone throughout her entire body" in the past month. When things quiet down around here, we probably will ask for this referral (even if he does not like giving it to us) because, if she does have mild CP, there are perhaps things we can do to help her that we are not already doing. Our plan as parents is to provide Hallie with all the support that we possibly can to help her be the best possible Hallie she can be. That was what we signed on for when we made the momentous decision to resuscitate at 23 weeks, knowing the risks she faced both in the NICU and down the road, and anything short of doing everything within our potential that we possibly can for her simply feels like dropping the ball on her. And that's not something either of us ever want to do (unless, of course, it involves burying her in a ball pit to satisfy sensory cravings, but that's another matter altogether).

But before I end this post, a few more cute pictures are in order:

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Hallie playing "This Little Piggy" with Lea's toes. She said the whole thing, and then went on to repeat the process on one of her dolls.

Hallie's been doing much more in the way of real pretend play these days. This is an emerging skill and still quite fragmented, as our Floortime/DIR therapist puts it. But she's moved beyond the basic social emotional levels that are the first stages described by Stanley Greenspan (Floortime guru) and onto more sophisticated stuff. Here Elmo is having a conversation on the telephone:

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And here Hallie has put her dolls to sleep (borrowing a few burp cloths from her sister in the process):

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And, speaking of burp cloths, I did get a shot of Lea loving on one of them:

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Not to be outdone in the sensory department, here's Hallie after she buried herself in the couch cushions:

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And, finally, not a picture, but an important statistic: we're up to 99 days without vomit this year and this is amazing to us. Last year we were closing in on Labor Day by the time we reached this goal; this year, we're not even quite at June. Woo hoo!

Monday, May 18, 2009

When Development Happens Differently

Well, here it is, the big development post. I have a few moments (I HOPE!) while both kids are down for their naps, and if I don't begin this now, I doubt that I'll ever write this post. I've sort of been dreading it for days.

Let's start with the good stuff, which is not in the evaluations that we have received for Hallie. First, Hallie really is beginning to expand her language spontaneously. She is singing songs to herself these days (three favorites are the ABC song, of course, and Old MacDonald's Farm, and the theme to Elmo's World). We're also hearing more several-word phrases ("big, big, red firetruck!" is for some unknown reason a personal favorite of hers right now; but she's also using a lot of modifiers for lots of different nouns and asking for things using multiple word constructions that are far from rote "put it on!" "push me, Mama!" "i want circle icey"...since apparently she prefers the storebought ice to our icemaker's rectangular output). We have also been sitting her down and asking her "what" questions and, if she is paying attention to what we are saying, she can answers these accurately most of the time ("what is Caillou riding?" we inquire and she retorts, "a bicycle." "What is on his head?" to which she says, "a helmet."). It's also clear that Hallie is reading a greater number of words than we knew she knew. We knew about "dog," "baby," and "bus" but it turns out that she can read "cat," "water," and several others. She also can recognize what words are from their signs. She has ASL flashcards with the sign and word on one side and a picture and word on the other. If she knows the word by sight, and you cover the sign, she can tell you the word just from the letters. If she doesn't, she pushes aside your hand, looks at the sign and tells you what it means. We own around 50 of these cards and she knows most of them and understands the concepts that they represent. Yesterday, I sat with her on the bed and played with them with her (they are among her favorite toys). I asked her what and function questions like "which one do you drink?" giving her a choice between water and cracker and "which one barks?" giving her a choice between duck and dog. She got 11 correct out of 11 and then lost focus.

Which brings us to one of the main issues that we are having with her right now, which is that of attention. She has no problem demonstrating attention and joint attention (with us) if she is interested in a task or game but as soon as she loses interest, which is often only after a minute (yesterday's game took two minutes or so to complete, so it was an extra long engagement for her), she starts to stare off into space, doesn't seem to care about the answer being right, dumps all the lacing beads, etc. She has a longer attention span for sensory activities (burying herself in balls or stuffed animals, jumping up and down on the couch, swinging etc), which is not terribly surprising given her sensory seeking profile, but we are at a loss as to how to improve her attention span and are beginning to think that ADHD seems like a diagnostic path down which to consider barking.

So those are the good things, and the guarded things. The bad things are the ones that are contained in her evaluations. It turns out, according to the Multi Disciplinary Evaluation (MDE) done by the agency to which the Philadelphia School District outsources its testing and service coordination of 3 to 5 year olds that, on average, Hallie is 32% delayed. The delays break down as follows:

1. Social/Emotional Development: 68% (32 % delay)
2. Adaptive Behavior/Self Help Development: 76% (24% delay)
3. Physical Development: 74% (26% delay)
4. Cognitive Development: 76% (24% delay)
5. Communication Development: 65% (35% delay)
General Development: 68% (32% delay)

In other words, at 34 months, she came out as being at around 23 months developmentally. Our big fear is that things will get worse if she remains this far delayed down the road (think of a 9 year old acting like a 6 year old and you get the picture). Some of the delays will undoubtedly improve if she gets services; for example, our gross milestone-meeting kiddo has never had PT and needs it desperately. No one seemed to care that the quality of the way in which she was meeting some of those gross motor milestones was substandard (for example, scoot-crawling rather than up on all fours, running with arms out way beyond when you are supposed to, and falling when there is the slightest unevenness to the surface, such as the transition from pavement to curb or pavement to schoolyard mat). PT will no doubt help her with this. But lingering in the back of my mind, at least, is whether Hallie has a mild and undiagnosed case of CP that prevents her from doing stuff like walking up and down stairs unassisted (she cannot do this, even if holding onto a banister) or pulling herself up on playground equipment. She wants to do these things but cannot, and so she compensates (she will resort to crawling the stairs) but she also does get into physically dangerous predicaments (like getting halfway up the monkey bar ladder and then having her strength give out). It makes it impossible for me to take her to the playground without watching her constantly and heading up the equipment with her, which is impossible for me to do if Lea is strapped to my body, and so we don't go to the playground unless someone else is watching Lea. This totally sucks because it also means she gets less practice and work out time to help build the strength she needs.

Of greater concern are the cognitive, social/emotional, adaptive, and communication delays. I do think that they underestimated Hallie's receptive skills by a considerable amount (her CHOP evaluation at 33 months placed her cognitively at 26-27 months, which we felt was far more accurate), but even so, she is not quite doing the stuff that a kid her age (even her corrected age is doing). One of our senses, given the recent Sensory Profile we had done, is that her sensory issues are getting in the way. She scored as definitely under-sensitive to Auditory Senses and as having an impaired Auditory Processing Function. This means that "Hallie almost always requires others to speak loudly in order to get her attention and is distracted in noisy environments. She frequently requires tactile cues in order to attend, ignores others when they are talking, finds ways to make noise with toys, and requires increased time to respond when her name is called. Auditory processing deficits may impact Hallie's ability to attend and participate in functional activities until completion." They will definitely make it harder for her at school.

She has a probable difference in visual processing, too. She likes looking at herself in mirrors more than others do, she loves bright and fast paced shows and frequently avoids eye contact.

She has a definite difference in terms of her tactile processing. Which means that she enjoys playing with food, splashing, finger painting, etc to distraction and this is what causes her to dump blocks on herself, bury herself in stuffed animals etc. She is seeking out sensory stimulation to get information she needs in a way that other kids don't need to do.

Her vestibular processing also comes off as definitely different. She needs to swing, jump on trampolines, spin, be bounced and tossed around on therapy balls to get the vestibular input she needs to calm herself. One thing we've been trying to do is give her this input before she attends to a close, fine motor table-top task in the hopes of improving her attention on the latter task.

And of course she has oral sensory processing issues. Some of these are related to her food issues that are medically based and are getting better over time. We can only hope that she stops putting toys and other inedibles in her mouth and starts putting more food in it (and sensing that it's there...she has been doing some food pocketing lately that is worrisome).

Anyway, a lot of the sensory issues, taken in combination with the communication/language issues have made Hallie seem pretty spectrumy (as in ASD). Right now, she's cleared of this, but depending on what happens next, she may well find herself back on the spectrum.

Meanwhile, we need to figure out how to help a kid like ours learn in school. Staying on task and communicating are the issues that I am focusing on right now, but that's just the tip of the iceberg. Meanwhile, I've had huge knots in my stomach and a major headache in anticipation of the IEP that is upcoming on Wednesday. Things have not gotten off to a good start with the agency handling 3-5 year olds in special education (this is a major understatement) and I have an impending sense of doom and dread. I am hoping that I am just being my Telly-like self (as in the Sesame Street character) and that all goes better than we fear it will and that we get the placement we want. Check back later in the week for an update (if I have the energy and emotional capacity to do one, that is!)

Meanwhile, I'll leave you with a brief update on food and vomiting. We made it to 90 days and then, likely as a result of some Burger King Chicken Fries, had a horrific day yesterday. Still, a 15 day run of no vomit seems pretty good to us and Hallie seems to be on the mend today (and is getting a very nice nap in, too, which she really needs considering that she woke up at 2am on Sunday and tore her room apart for three-ish hours before falling back asleep and had a really awful day yesterday that involved two bouts of vomiting).

And, for those of you who tune in for the pictures, I will leave you with this charming photo of a sisterly stretch:

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Friday, May 15, 2009

Growing, Growing, Growing

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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.

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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.

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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):

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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:

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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:

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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:

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Just Chillin' in her Stroller

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

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And here she is hugging Zoe:

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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!