How Old is Hallie?

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How Old is Lea?

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Thursday, July 30, 2009

"I Riding Horsie...Neigh...Neigh!!"

It was perhaps a fortuitous coincidence, but this spring, Megan, one of Hallie and Lea's two older cousins, decided to volunteer at the Atlantic Riding Center for the Handicapped (ARCH), which is located not far from Aunt Laura and Uncle Bryan's house in Northfield, NJ. She is in love with the place and has logged tons of volunteer hours there and has gotten to know the horses, trainers, and therapists really well.

About the same time, we decided that it would be a good idea to start Hallie in Hippotherapy. We've read great things about how much it helps children (and grown ups) with all sorts of physical, cognitive and neurological challenges. Learning to ride, and performing therapy while riding, not only assists in core strength and balance, but also in executive motor planning (you learn to guide your horse and command him or her to go, stop, etc), communication (you must use language and/or gesture/body language to communicate messages to the horse and in the process, you learn that language isn't just for labeling but for getting a message across to someone or something), empathy (caring for your horse teaches you this), sensory integration (you need to use all of your senses, work on bilateral use of limbs and cross the midline a lot), and the like. For more on some of the benefits, see this brief description of hippotherapy. And, while it might sound as if it's an exercise in riding hippopotami, indeed, it's all about riding horses, as "hippos" is the Greek word for horse.

Part of the reason the idea was oh-so-appealing is that Sharon loves horses to such an extent that, when she was in high school, she bought one for herself. She had asked her parents to buy her one, and like most sensible parents in most places and times, they responded with a big, fat "no." So Sharon worked extra hours, saved money, and bought a friend's horse when it turned out that her friend could no longer keep her. Sharon loved Candy, her horse, and worked in the barn at fairly menial tasks before and after school to earn its board and would lug (with the help of her dad) food and hay and such to Candy's stall. She even slept alongside Candy in her stall more than once. While she never took riding lessons, teaching our kids to ride has always been a priority for her (and consequently for me, even though I am from Brooklyn where we had very few horses and approximately zero horse farms). So, even though we never imagined that we'd be seeking out precisely this experience for one of our kids, we decided to ride with it, so to speak.

Two weeks ago, Hallie went down to ARCH for her evaluation. We were lucky to secure a much-coveted Saturday spot at a decent hour (12:15) that will allow us to get Hallie fed (no mean feat, as anyone who reads this blog knows by now) and off to the ring. During the summertime, at the very least, we'll try to go down on Friday nights each week so that Hallie and Lea can spend time with their cousins, aunt and uncle, and Grammy. This is also a pretty convenient way of avoiding shore traffic.

Hallie took to riding Cocoa, the pony upon whom they started her, like a pro.
While she spoke very little and her voice was even quieter than usual (this tends to be the case whenever she is in public and outside of her comfort zone), she nevertheless learned quite fast how to use the basic commands ("walk on" for "go" and "ho!" for "stop") and held her reins really nicely. She also named the colors of her reins, called out the letters on the cones which held posts from and to which she was asked to transfer rings, and the like. Her posture was great and she especially loved it when she got to trot Cocoa. She also really enjoyed nuzzling Cocoa at the end of the assessment and leaning in to give him a hug. To the extent that she talks (which is not much), she talked about the experience for the next week ("I riding horsie") and called her pony by name and was clearly thrilled to see Cocoa last Saturday when we returned for her first real session.

Her therapist, Betty, thought that Hallie did so well that she upgraded the reins to more challenging ones. Megan says that Betty thinks that Hallie is already quite a bit better than many of the children who have been riding for a while and it makes us happy to hear this (not that we are competitive; it's more that she seems to have a certain degree of natural athletic ability and certainly athletic drive, which makes us happy). Riding Cocoa (and the horses to whom she will graduate as she gets bigger) will be really good for Hallie's self esteem. For a kid who is socially anxious and aware of her differences from other children already, this is a good thing.

The few pictures we have of the assessment and session are pretty crappy because the light was awkward (she used the indoor ring but it was open to the outside and hence we had the worst of all possible filming conditions). On top of this, we were pretty far away from her and our camera isn't equipped with a telephoto lens. But we'll try to give Megan a camera to take some shots next time so that the blogosphere can see how good Hallie looks astride a horse.

Wednesday, July 29, 2009

Sitting Pretty


Lea's been sitting unassisted for a couple of minutes at a time for about ten or so days now, but now she seems to have mastered the skill sufficiently to allow me time to grab the camera and take a shot of her in action without fear of her toppling over and hurting herself.

On an unrelated matter, it seems that kids who are not on oxygen and have their own always-at-the-ready nasal canula upon which to hold are at a real disadvantage relative to their oxygen-dependent counterparts. Hallie always used her canula as a security blanket, of sorts. Here's a picture of Hallie at about 4 months (corrected) holding her love object:



Lea had to go and find a hula hoop to grasp to derive the same pleasure.
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Just Like Grammy...

We spent Friday and Saturday nights at Grammy's this weekend so that Hallie could go to hippotherapy bright and early (for us...our appointment is at 12:15pm, but between the fact that Hallie is a slow poke eater---a serious understatement---and shore traffic, we need to spend Friday night in Northfield or Egg Harbor Township). When she woke up, she had breakfast with the family at the table. Since Grammy was eating cheerios, Hallie requested some too (she says "cheerial"--a combo of cheerios and cereal--which we think is really cute). And since Grammy was eating hers out of a bowl with a spoon, that's what Hallie wanted to do. This is quite a bit of progress for a kid who hates dishes and utensils and asks me to "dump it" whenever I bring her food in a bowl. And, since Grammy was reading the newspaper with her breakfast, Hallie requested a section of the newspaper and started reading, too.

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Thursday, July 23, 2009

Eating at the Table

 
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Still working on my mammoth preschool post, and several others. But meanwhile, we have some breaking news: Hallie is no longer eating in front of the television but at the table, with her family. We started this trend this past weekend, when we were down at Aunt Laura's and Uncle Bryan's house to visit with the cousins and rest of the family and take Hallie to her hippotherapy evaluation. We decided that, enough was enough: the TV is a major distraction; takes away from joint attention with real, live people; protracts mealtime in a deleterious manner; and is downright annoying. Plus, it really wasn't helping any more--she ate no better in front of the television than she might otherwise have done (which is to say, she eats poorly in both cases). So we fed her with her cousins at the table for most of the weekend. At least this way she'll have family meals.

I have to say that, so far, so good. Meals are shorter (around 45 minutes), more enjoyable (most of the time), and more normal. Plus, we get to eat (even if it's just a bit of the same stuff that we're feeding Hallie). We've moved the high chair to the table (we still need to use this or else we end up with meals that consist of four or five bites) and set up our second high chair for Lea (who is eating rice cereal with us at dinner).

We do end up reading with Hallie or coloring, but at least these are joint activities. Hallie can't really have a conversation with us that is substantive; we've tried asking her about her day, but her capacity to discuss things that she might have done out of context is limited, to say the least, and all parties end up feeling frustrated. We try hard around here not to make mealtime (or speaking, for that matter) more frustrating than it already is for Hallie.

So far, save some behavioral stuff at the tail end of meals when Hallie really has had enough of sitting there (even if she hasn't eaten as much as a typical kid might at a meal), we've had no major meltdowns. I've started having Hallie take responsibility for cleaning up her food. She won't use a plate, but she will replace all of the leftover food on her tray into the appropriate plates or dishes and help wipe herself and her tray down. And if she does pitch a bit of a fit, she needs to tell me that she is sorry. The rule is: we'll try to respect her (within reason, so, no a two bite meal is not good enough) and she'll try to respect us. At least we've got the rudimentary building blocks of etiquette even if she can't really handle spoons too well and likes to use her fruit purees (of which she is eating less and less these days) as a sensory tool (think fingerpaints).

And, as of today, we've hit 140 days without vomit, which is just a little bit shy of the number of days without vomit that we experienced in all of 2008.

We're hoping that the feeding therapists at Thomas Jefferson University, where we just completed yet another feeding evaluation, can help us in this process. They take the absolute opposite approach that CHOP does, which is to say that they are not using a behavioral approach (which often is tantamount to force feeding in our estimation) but a more child-directed approach, to improve mealtimes. We'll find out some time next week when they can work us in for weekly sessions.

It's sort of funny and sort of sad that it's so hard to find time in Hallie's schedule these days. She's the quintessential over-scheduled child, but rather than partake in T-ball and soccer and dance and gym classes, she goes to occupational therapy, hippotherapy, feeding therapy, and DIR/Floortime therapy, on top of her 17.5 hours per week of preschool, 3.5 of which are devoted to OT, speech, special instruction, and theoretically PT (but not actually, since there is no physical therapist who can visit her yet and the folks that run the 3-5 program are gleefully violating Hallie's IEP...presumably they will be doing so a bit less gleefully when I get back in touch with the nice lawyers at the Education Law Center with whom I have been having some interesting conversations of late...). Anyway, we were considering adding in private speech therapy and a social skills class on top of this, but, frankly, there's nowhere to add these. Besides, as Steve, Hallie's Floortime therapist, asserted the other day when I was discussing this with him at the beginning of Hallie's session, it's not clear that Hallie is ready for social skills classes yet--she needs to be able to fluidly complete 50-60 'circles' of communication (not just speech but gestural, body language, etc) in order to get the most out of a social skills group. Hallie can currently complete 20-30 on a good day, but this is still a lot of work for her and, so, what we need to do right now is focus on getting her to another, higher developmental stage.

Which brings us to issues related to preschool, and that needs to be in another post because it's already plenty late around here and I need to get some sleep before I begin my own over-scheduled day in a few short hours.

Like Mommy, Like Hallie

Hallie is obssessed with Sharon's pumping paraphanalia. Almost every day, she'll bring the black bag in which it is kept over to Sharon and, now that she's great with zippers, she often removes its contents.

One day, a week or so ago, we found her doing this:

 


When we asked her what Mommy does with this stuff, Hallie answered: "Mommy making Lea's milk."

How funny and cute!
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Thursday, July 16, 2009

Meeting the Extended Family (The Belated Fourth of July Post)

 
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As those of you who have followed this blog for a while probably know by now, we have a pretty unconventional family. This goes way beyond being a two mom household; while we chose to use an anonymous donor when we decided to have kids, we've been very open to the idea of meeting and getting to know the other parents who have chosen to use the same anonymous donor. So, one of the first things we did, even before Hallie and Olivia's birth, was join the Donor Sibling Registry, where we discovered that others who had also used our girls' donor (henceforth '1876') had already established a presence. We quickly found out that there was also a Yahoo group dedicated to our families and we joined that, too. Over the past three years we've corresponded and shared pictures with the other parents who have chosen to identify themselves to the group and this is how we've gotten to be such close friends with our girls' big brother, Jake, and his lovely mom, Gina. Jake and Gina have gotten to meet another brother in Florida and a few of the other kids and their parents have met up in various places.

This past spring, several of us decided to try to get together on a bigger scale. It would have been really hard to get everyone together in one place since we're all spread out (from my recollection, there are kids in Oklahoma, Texas, Iowa, Florida, New Jersey, Missouri, Pennsylvania, North Carolina, Virginia, Maryland, and Puerto Rico. I am probably leaving some out, too). A couple of the Midwestern and Southwestern families were planning on heading East for vacation and so we settled on the Washington DC suburbs, which was convenient to a good number of us East Coasters and Mid-Atlantic types. And, to make it possible for as many as we could to attend, we chose one of the summer's long weekends. This made our 4th of July celebration extra special this year.

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On Friday the 3rd, Gina, her mom, and Jake headed down our way in a rental vehicle (since we needed to accommodate three car seats, four adults, tons of clothing and toys, and an ice chest full of goat milk products for Hallie) and we all piled in and had a great drive down to Maryland. The kids had a fabulous ride and Hallie adored sitting next to her big brother. The traffic on the way down wasn't terrible, either, which made up for the rental car SNAFU that Gina had experienced earlier in the day (when the rental car company down by them gave her a way-too-small vehicle. They ended up locating an adequately-sized alternative at the Philly airport but had to drive up here, figure out where to leave their car, and then pick us up).

Anyway, the kids would have been thrilled just at the prospect of racing up and down corridors, running in and out of one another's room, and jumping on the bed (a la Five Little Monkeys).

But we had a whole lot more fun planned for the weekend.

Eight 1876ers, one 1876er's sibling from another donor (yes, I know that's confusing...sorry, but our family really is pretty cutting edge), and Olivia, in spirit, spent the better part of Saturday gathered at Ben's house for a sibling meet-up of what seemed like epic proportions.  As one of the moms put it, "Thank god there aren't 1876 of 'em."

Gina, Jake's mom, had fabulous t-shirts made up for the event:


 
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And Ben's moms had rented a moon bounce for our very active kids to enjoy.  Hallie had a grand time climbing up it, sliding down it, and jumping in it:

 
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The professional photographer whom we hired got some gorgeous shots of our girl.  You can totally see the contrast between the photos that we took with our silly rinky dink camera and her professional apparat:

 
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Hallie had a great time on the tire swing, too.  

 
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Vestibular motion appeals to many of our 1876ers.  Here's a picture of Jonah, the oldest of the bunch (at least insofar as we are aware) enjoying some swinging:


 
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And here's one of Jake (with Gina):


 
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And one of Jessica:

 
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While she was a bit too young for the tire swing, Lea enjoyed some swinging of her own, courtesy of Mommy:



 
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Lea got a lot of holding and loving time from everyone that day:

 
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Alyssa, in particular, thought that it was way cool that she--the oldest girl there--got to hold the littlest girl. Here she's getting some help from her sister, Jess.

 
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While all the 1876ers look a lot like their birth moms, they also look a lot like one another. They seem to fit into two types--the blonde-haired 1876ers (Ben, Asher, Jess, and Ellie) and the brown-haired ones (Jonah, Jake, and Hallie). I'm not sure which group Lea belongs to, yet, since she kind of doesn't really have a lot of hair. But even though they may have different hair color, there's definitely a family resemblance between these kids:

 
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Anyway, a great time was had by all and we were thrilled to have been able to participate. Hallie's big smooch with Ben at breakfast the next day says it all: we are grateful that Rebecca and Claire opened their home to us and that we had a chance to meet a good portion of the rest of our far-flung family. We hope to do this again some time soon!

 
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***

More posts to come about preschool and our weekend trip to New York. But for those of you who tune in to see what our tally is of days without spew, we're now up to 136. That's more than double where we were at this time last year!

Tuesday, July 7, 2009

Olivia's Grove 2009

 
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As usual, I am WAY behind on blogging. This post should have been done over a week ago (12 days ago, to be exact), but there's been a lot of stuff--mostly quite good--going on around here lately and I haven't had much of a chance to get to sit down at the computer and blog. We were engaged in a flurry of activity related to going to DC for the 4th of July weekend to meet 5 more of Hallie and Lea's donor siblings; getting ready for the first day of Hallie's preschool, which started on Monday July 6th; and preparing for this week's mediation sessions with the subcontracting agency that handles special education for ages 3-5 in the city of Philadelphia. Between all of that, our actual trip to DC and the actual start of preschool, a three year old in the throes of terrible two testing, and a teething five month old, it's been a bit crazy around here. I know, excuses, excuses, excuses...

So this is the first of at least three long overdue posts.
***

On Sunday June 28th, the third anniversary of our loss of Olivia Skye, we visited Olivia's Grove at Pastorius Park in Chestnut Hill. We found that the trees, which had been tiny saplings when Sharon first helped plant them in the autumn of 2006, were really filling in and that they had been beautifully and lovingly tended.

The kids enjoyed lolling about on the blanket that we brought with us and Hallie, as usual, enjoyed racing around the grass, chasing after balls and bubbles, and checking out (with an appropriate degree of caution), some of the many dogs who frolic in the park.

 
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But the interesting thing is that she seemed to know that it was a bittersweet occasion. We think this emotion is quite beautifully captured in this picture, where she is helping Sharon lay down the flowers we had brought at the feet of the biggest tree that commemorates her twin's brief life. It was kind of like she knew why we were there, and what her role was in the process.

 
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Olivia knew that we were there. As has been the case for the past two years, the sky darkened and it began to rain just as we placed our flowers down in front of the largest of the Chinese Hemlock trees that we had planted in Olivia's memory.

Rest in peace, sweet Olivia Skye. We love you very much and miss you terribly.