How Old is Hallie?

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How Old is Lea?

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Saturday, February 28, 2009

The Mother of All Posts...Part Two: Visiting with Friends and Having Fun

Just in case my last post transmitted the impression that it was all surgery and eating (neither of which are particularly fun activities where Hallie is concerned) around here, allow me to correct that post haste. We've also had our fair share of fun play dates and outings around here lately.

In addition to her regularly scheduled gym class, which Hallie loves (and which has given Hallie a sense of structure, circle time, cleaning up, etc as well as a lot of physical strength that is beginning to show---she is now getting more comfortable walking up stairs with support both from us and the banister and has learned to climb on the monkey bar structure that is giving her access to the long slide in the playground down the block and my heart is no longer always in my mouth when she attempts this feat), we've also been doing a bunch of other fun stuff.

First, two weekends ago we had a very nice playdate over at Elizabeth's house with Elizabeth and Eliza Grace. I got a couple of nice shots of two of our moving targets who did, actually, play a bit with one another.

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Sadly, I did not get a picture of Elizabeth, yet again!

We also had a fun play date with Jake and Gina who came to visit us for dinner that same weekend. Jake is an amazing kid and the resemblance between him and Hallie are remarkable and more than just skin deep. Both kids are into numbers and letters and Jake is able to not only write his name but also a lot of other words. He is a beginning reader at the ripe old age of three and very, very clever (Hallie is showing signs in this direction, too. This morning she took out these sign language flash cards I bought way back when that we never actually used and not only focused on the pictures and signs but also on the letters, spelling out each word and pointing to them with her fingers in the way that an early reader would). Both Hallie and Jake are into puzzles and Jake acquainted us with these very cool multilayer puzzles (of course, I ran out--or surfed over--and bought one of an egg turning into a tadpole and then a frog that is now on its way to our house).

Like Hallie, Jake is also a sensory kid. Perversely, this makes us very happy (I am not sure it makes his mom so happy, though!) since it's clear that Jake is not only typically developing but a gifted little boy.

Jake also made me happy by eating seven (!!!) of my fish sticks. I hope that one day he serves as a model for Hallie in this respect.

Here's a lovely shot of all the kids and Gina:

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And here's Jake playing dress up. Of all the options, he picked Miss USA. Silly boy!

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We've also managed to get to the Please Touch Museum twice in the last week. On our first visit, which took place on a Saturday, it was enormously crowded, but Hallie mostly took things in stride and did not get overloaded or melt down (until we got to the carousel line, but even then pretty much did okay even with the fifteen minute wait).

As predicted, Hallie loved the room full of shoes (a pretend shoe store) and was particularly attracted to a pair of black patent leather tap shoes that were way too big for her. We almost had to do an intervention to get them back!

Here she is planting flowers in the flower garden:

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Here she is oggling herself in the Alice in Wonderland exhibit:

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And here she is looking like a giant in that same exhibit:

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Honestly, I found the whole Alice in Wonderland thing just a bit freaky. Oddly enough, I've never been a big fan of the book (I also don't really like that other classic, Wizard of Oz, terribly much. I find both fairly frightening and always have).

Of course, Hallie was particularly interested in sensory experiences at the Please Touch. During our Saturday visit, she grooved on racing through and spending time in the section where they had what I think was a simulated rain storm using these plastic sheets cut into ribbons that hung down all around (kind of like the things that wash off the water at a car wash). She would have spent all day in there. The picture does not do justice either to the exhibit or Hallie's joy at spending time in it:

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And speaking of sensory experiences, Hallie LOVED the water table area. She gleefully played with the ducks and water wheel toys and boats on both of our visits.

Of course, some of this play involved considerably rearranging.

Where do you think all of the ducks from the duck pond went?

Why, here they are!

And no sensory experience is complete without sticking one's hands into the hand dryer:

Hallie also had a lot of fun playing in the three-and-under indoor playground area and loved how fast she could go on the indoor slide:

(She also just mastered what I call the 'curly slide' at our local playground. Way back when, she had a bad flipping incident on one of these and we've been too chicken to have her try again. Piece of cake now)

And she loved jumping on the lily pads and even managed to get both feet off the ground roughly at the same time once or twice:

Hallie also had a great time in the arts and crafts room. She seemed to know exactly what to do in terms of painting at the easel (though to my knowledge she has no actual experience doing this). She picked up the brush like a pro, happily dipped it in paint and used the paper (rather than her body) as a canvas. She ended up having a marked preference for green, but the finished work of art is quite lovely and Hallie seems very proud of it:

And here's Hallie playing dress up with some wild stuff in that same room.

All in all, she had tons of fun at the Please Touch and we're hoping that we get to go back soon and that some of our friends, preemie and full-term alike, join us there!

Just one last note: we did, at last, manage to interview a single decent nanny candidate (out of a field of about a dozen, and many dozens of emails from others we did not bring in) and, thankfully, she accepted the position when we offered it to her. Our new nanny, who will start on the 16th, when Sharon needs to return to work, has some personal experience with feeding issues and aversions and kids on the spectrum; her nephew, who grew up with her, has both and so N. has an idea of what she is getting into here (which is always useful) and was even here for a feeding therapy appointment that exhibited Hallie's averse and sensory tendencies around food. We try to be up front about Hallie's issues without detracting from her excellent points, though it nearly always feels like we are making excuses for her ('she has all these needs, but she is the sweetest girl in the world' starts to ring hollow for me). Thankfully N. was not put off by this and seems up to the challenge. So at least that's off our plate.

Still on our plate: testing (for the 3-5 early intervention ("Intermediate Unit") placement); preschool visits (more on this in the next post); and fighting the system. Also on our plate: two batteries of tests--one administered by the Center for Autism and the other by the annoying agency that administers IU in Philadelphia County. Makes ear tubes seem like a walk in the park.

Whew...two posts down and one more to go, but no promises that I'll get to finish, or even start it, before the dawn of March.

Friday, February 27, 2009

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):

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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!

Sunday, February 22, 2009

Lea, Week 2 to 3

For those of you wanting a nice fix of Lea Paxton, this one is for you! Here's a chronicle of some pictures taken by Sharon during week 2 of Lea's life:

While Grammy was here last weekend (as opposed to while she was here helping us out again this past week), she decided that it was high time to sponge bath the baby. Here's Lea getting ready for her first bath:

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At first, she was pretty much okay with what was going on:

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This, however, quickly changed as she realized that she was about to be scrubbed and soaped and grammy-handled:

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Like Hallie, though, Lea is not much of a crier. She basically cries a bit only when hungry (easily addressed), pooping (pretty easily addressed, though this takes some working out when you don't quite have gravity on your side yet), or getting changed. After that, she's as content as can be:

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Lea does, however, make a lot of little noises otherwise (a side benefit of not having a paralyzed vocal cord, I suppose). Most of these are squeaks and grunts. This has earned her the nickname "Squeaky Grunty."

Here's a nice shot of Lea looking all snuggly:

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And here she is sleeping (she does a lot of that, basically in rotation with eating and pooping, though she's had a lot more alert hours this past week):

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And here's her cute and pensive look:

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She often looks cute and pensive. Here's some shots of Lea being cute and pensive in a lovely set of giraffe jammies that our friend Sara brought her:

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And here she is yawning. She has the sweetest yawn!

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Anyway, for those of you looking for a Hallie fix, hang tight. I'm in the middle of a post about Hallie where I talk about: 1. more run ins with the 3-5 Early Intervention folks in our quest for preschool placement; 2. a delightful visit with Jake and Gina; 3. Hallie's surgery (which went fine, all things considered); 4. a fun time had by Hallie at the Please Touch Museum, as well as our regular eating and food related update. So check back soon...I promise this is in the works!