Today is Hallie's and Olivia's should-have been second birthday. It's amazing, and a bit frightening to me, how quickly time flies. Didn't we just celebrate their actual second birthday? And can it really be four months since Hallie started talking, nearly a year since she started walking, and just shy of two years since she came home from the NICU?
October is always an emotional month around here, and it always creeps up on us. The overtly traumatic nature of June, when Sharon went into labor with the girls at 23 weeks even and had them four days later, eclipses that more subtle sorrow of October. The joy of celebrating Hallie's actual birthday--for she has unexpectedly come so far and so single-handedly demonstrates the adage that statistics have no bearing on the individual case--to some extent tempers the bittersweet nature of June, which is indelibly tainted by the sheer horror--for there is no other word--of our twins' birth and the awful roller coaster ride that ensued and the loss of our sweet Olivia Skye. We sort of forget about October all summer long, and then here it is: the day that the girls should have been born, the day that would have likely signified their auspicious start in life. Way back when, two plus years ago now, our goal was for Sharon to give birth no earlier than Labor Day. We figured that twins would come sooner than would a singleton and that 36 weeks would be term enough for them. So we were planning on an early September birth and anything after that would be icing on the cake, so to speak. Not in our wildest nightmares did we consider that the Fourth of July would look like an acceptable vantage point from where we found ourselves just over two years ago.
October does have its up sides, though. Hallie came home a week after her due date, on the 10th of October, and though she had tubes and monitor leads attached to her and though she was so small--she looked like a giant to us, but very frail to the rest of the universe; our excellent pediatrician recently admitted to us that he was quite overwhelmed by her size when he first met her--we knew that she was going to make it once she was discharged from the ICN and into our arms. And October is, in a lot of ways, Hallie's favorite month because it ends with Hallowe'en, which is apparently her favorite holiday.
We are hoping that October is a quiet month around here this year; we are almost certain that the drama of last October, when Hallie could keep almost no food down and when we were slowly losing our minds from this and from the sleep feeding that Sharon did in order to keep our girl growing, will not be repeated this year. We've learned so much about how Hallie's system works over the past year and this empirical knowledge serves us well. Our little girl is a heck of a lot happier this year than last, something that struck me quite vividly as she and I cuddled before her bedtime bottle just a bit ago. Her color is better, her mood is vastly improved, and she is developmentally a very different kid than she was on her first corrected birthday. This by no means implies that we accept that ridiculous notion that preemies are "caught up" by age 2. We still see differences between Hallie and her full-term peers, and we're still quite vigilant about making sure that she has all of the resources in the world available to her, particularly where speech and language communication are concerned. But all in all, we know we are blessed and we know we are lucky. And, for the first time in a long time, after the nice stretch of pretty smooth sailing we've experienced over the past month or two, we're feeling optimistic that we can get this food allergy thing under control and keep ahead of it.
We are also hopeful, in a guarded way, that this pregnancy will at least outlast the previous one for Sharon. Sharon will be 22 weeks tomorrow, and we're on high alert for any problems, but things have been pretty good for the past couple of weeks. We're taking it one day and one week at a time right now, and are breaking our long range goal (a full term baby) into more manageable interim milestones (like it would be nice to reach the traditional milestone for viability, which is 24 weeks, this time around, and then we'll set our sights on having a third trimester).
And finally, we are grateful, on this adjusted birthday for the things that parenting Hallie has brought to us. We've not only learned a whole heck of a lot more about the worlds of science and medicine--things that I suppose are useful, though I wouldn't have minded not knowing them--but parenting Hallie has made us better parents. We are more patient, thoughtful, and forgiving people and I think that Hallie has also taught us a lot more than we would have ever otherwise learned about not just paying lip service to accepting difference and such (for better or worse, depending on your perspective, Sharon and I are educated East Coast liberals and so the language of tolerating difference is something with which we've both grown up, more or less). Parenting Hallie has made this into a lived experience for us, and that is an unmitigated good thing. We would have raised her to be a nice kid (we hope!) and most certainly would have taught her that everyone out there is equal, regardless of their visible or invisible disabilities and differences, but I am not actually sure that we would have come into as much close and personal contact with people with disabilities and translated the abstract construct of 'accepting difference' into something that she--and we--actually live. I was just saying to Sharon tonight that, had it not been for Hallie and our concerns about her speech and language development, we would have probably been just like every one of our other friends: we would have talked about, and perhaps even taken, a Baby Signing class or two, and perhaps bought a book or two about sign, but we'd never have embarked on teaching our child--or ourselves--American Sign Language or made signing part of our daily lives. And this 'accepting difference' business is not just about accepting those who are differently abled, either; parenting Hallie has brought me into a world where I am in very constant contact and interaction with many parents whose worldviews--religious, political, spiritual, geographic, what have you--are vastly different from my own. Getting outside of my own comfortable cocoon of accepted beliefs is a good thing; I have learned to appreciate all sorts of differences -- and not just tolerate them -- as a result of being Hallie's mama. The circumstances of Hallie's and Olivia's birth still remain traumatic and awful, to be sure, and there's nothing that I would not give for their adjusted and their actual birthdays to have coincided. But in the spirit of making lemonade---and really much more than that---from lemons, the good things that we have gotten from parenting Hallie do matter and are things that I hold very dear as I reflect on Hallie and Olivia's should-have-been birthday tonight.
So even though we're no longer supposed to be adjusting Hallie's age anymore, and even though we've adjusted -- more or less -- to the new normal, I cannot help but think about all of these things tonight.
***
On a more mundane, but very significant note: we're now on 121 vomit free days around here, which places 150 totally within reach!
How Old is Hallie?
How Old is Lea?
Showing posts with label Signing. Show all posts
Showing posts with label Signing. Show all posts
Friday, October 3, 2008
Friday, February 29, 2008
Long Time, No Blog
It feels like forever since I posted and I've been trying to find a few spare minutes to write ever since Monday. Alas, it's now Friday, but mercifully, Hallie is down for a nap (she woke up way too early today, at around 7:15, and had a very hard time going to sleep last night since she had one of her bottle-refund episodes and then couldn't settle back down easily, so I am not surprised that she was begging, in her own wordless way, for a nap by 10:30am). So I'll try to make this quick, since one can never predict whether a nap will last an hour (which it already has) or three hours.
So, bright and early on Monday morning (at 8am--not an hour that Hallie normally is up by), we had an appointment for a speech assessment over at CHOP. Given the earliness of the hour and the fact that our girl (like her mommy) takes a long time to wake up in the morning, we were surprised at how cooperative she was. The very nice speech therapist started out by asking Hallie to point to various familiar objects in a book (a ball, a dog, shoes, and stuff of that nature) and then kept going for several pages, finally maxing out Hallie's capacities when it came to identifying actions (not something that she really quite understands). She then asked Hallie to do various things with toys, watched Hallie turn around on command (she taught this trick to herself--we were not aware that she knew the word 'around') and go through her ever-expanding repertoire of signs. Finally, she listened to the various (and few) speech sounds that Hallie produced during the session (we got her to say her favorite word, 'kitty', but not much else). We'll be getting a formal written assessment at some point, but after all the tallying up of scores, it turns out that Hallie is at the 21 month level in terms of her receptive speech (which places her a bit BEYOND her actual age in this respect) and at the 12 month level in her expressive speech (4+ months delayed for her adjusted age, and about 9 months delayed for her actual age). Despite this wide gap, it's too soon to say that Hallie is officially apraxic. So the therapist gave us a bunch of tactics to use to help Hallie communicate expressively (making up a book or photo album of important pictures in her life, so she can point to what she wants and perhaps practice naming these things) and creating letter-boxes (boxes of cards that begin with a specific letter) with which we can practice Hallie's words. And she will give us the contact numbers of several speech therapists, but it's not clear whether insurance will cover this because the way scores are computed means that the two numbers--the receptive and expressive--are added together and then halved, at which point Hallie comes out looking like she is at about the 16 month level, which is totally fine. It's a pretty bad system, if you ask me, and designed to work against early-enough intervention for Apraxia. But it is in keeping with the very crappy health care system we have that favors intervention only once a problem has gotten out of hand and denies any assistance on prophylaxis to prevent a problem in the first place. That's bass ackwards, if you ask me, and even from a purely cost-control perspective (since it would be naive to assert that insurance companies are interested in people--lord knows that money is the number one priority), it makes no sense. It's precisely like all those situations where tens of thousands of dollars worth of surgery and g-tube maintenance is covered, but feeding therapy is not.
OK; I'm done with my rant here.
Anyway, we'll be working with Hallie and if need be train ourselves in the potentially useful therapy tactics (PROMPT, Kaufman praxis, what have you) to see if those things cannot help our kid find her voice.
Meanwhile, Hallie has definitely experienced an expressive signing explosion this week. She's picked up the following: dog (which she signed when she wanted her stuffed doggie), hot, cold, potty (which she used today to indicate that she had pooped in her diaper!), hat, cookie, apple, bear, help (which she is also using correctly), car, go, stop, and a bunch of others that I am now forgetting. She knows at least 20 signs and possibly many more than that---what happens is that she hears a word and signs it and that's how we realize she knows the sign. A few times this week, she signed 'yes' when the word 'yes' came up on the video but before Rachel had produced or spoken the word. I am not sure that this indicates that our girl can read, but what it does indicate is that she is familiar with sequencing and has a great memory.
On top of this, she is also experiencing a surge in her fine motor skills. I bought her a puzzle with shapes on it--it's one of those wooden ones with small pegs, and it contains a square, pentagon, rectangle, oval, circle, and triangle. We unwrapped it for her on Monday night and she took out all the pieces and put them all back in correctly, several times in a row. She is also using her stacking rings (she never used to do that), sorting her blocks like a champ now, and pretend feeding me (from one of the plastic Margarita cups she found in the sideboard and claimed as her own--apparently she's interested in hosting a cocktail party at some point soon). Anyway, she's a really cool kid and very smart and even if she doesn't ever talk in a conventional way, it's clear to us that she has a lot going on in that little head of hers and that she's finding ways of letting us know all about it.
We really do need to teach Ami sign, though: Hallie was signing all day for her doggie (which was upstairs) and Ami had no idea what she was doing or what the kid wanted. Sharon and I have both learned a lot of sign so far (Sharon is MUCH better than I am) and cousins Adam and Megan are learning a ton, and the rest of the Levy family (Sharon's sister, brother in law, and the other kids) have expressed a great deal of interest in learning, too. And regardless of what happens speech-wise, we really want Hallie to keep up with her signing. I think that a second language, whatever that language is, opens up new parts of the brain and opens up new worlds to whoever masters (or attempts to master) the language. It's a good thing all around. We had always planned to raise bilingual kids (we thought maybe Russian, Spanish, or after Karina was born, Chinese) but if it's ASL, that's fine too.
Hallie still has a bit of a cold and is still snarfly as a consequence (hence last night's refund episode), so there's been more vomit this week than any week in the recent past, but we are hoping she gets over this soon. We've taken to trying to get 6 ounces of baby food in her at every meal (up from four) and this is going well (for the most part, though the second or third time around after an upchucking session she's not nearly as cooperative as the first). And we're also working on getting her to drink out of an open cup (plastic, or the nosey cups), which she is enjoying, likely as not due to the novelty of the experience. We're not sure what her weight is right now, but will have to check this out pretty darned soon.
Finally, both of Hallie's 'stomach teeth' (canines) have broken through now, and we are still waiting on the two eye teeth. We know that at least two and maybe all of the first-year molars are through the gums (though not entirely in), but she wouldn't let me check today (which was probably a good thing for my poor fingers), so I can't say for sure what is going on with them.
Blogger is giving me one of its oh-so-fun-super-hard-times with uploading images, so I'll have to do these separately. I'm also busy downloading software to back up a (broken) RAZR to my hard drive (let's hope it works, because otherwise all of you whom I know IRL will never hear from me again because I've lost your phone numbers...). So more later...I promise!
So, bright and early on Monday morning (at 8am--not an hour that Hallie normally is up by), we had an appointment for a speech assessment over at CHOP. Given the earliness of the hour and the fact that our girl (like her mommy) takes a long time to wake up in the morning, we were surprised at how cooperative she was. The very nice speech therapist started out by asking Hallie to point to various familiar objects in a book (a ball, a dog, shoes, and stuff of that nature) and then kept going for several pages, finally maxing out Hallie's capacities when it came to identifying actions (not something that she really quite understands). She then asked Hallie to do various things with toys, watched Hallie turn around on command (she taught this trick to herself--we were not aware that she knew the word 'around') and go through her ever-expanding repertoire of signs. Finally, she listened to the various (and few) speech sounds that Hallie produced during the session (we got her to say her favorite word, 'kitty', but not much else). We'll be getting a formal written assessment at some point, but after all the tallying up of scores, it turns out that Hallie is at the 21 month level in terms of her receptive speech (which places her a bit BEYOND her actual age in this respect) and at the 12 month level in her expressive speech (4+ months delayed for her adjusted age, and about 9 months delayed for her actual age). Despite this wide gap, it's too soon to say that Hallie is officially apraxic. So the therapist gave us a bunch of tactics to use to help Hallie communicate expressively (making up a book or photo album of important pictures in her life, so she can point to what she wants and perhaps practice naming these things) and creating letter-boxes (boxes of cards that begin with a specific letter) with which we can practice Hallie's words. And she will give us the contact numbers of several speech therapists, but it's not clear whether insurance will cover this because the way scores are computed means that the two numbers--the receptive and expressive--are added together and then halved, at which point Hallie comes out looking like she is at about the 16 month level, which is totally fine. It's a pretty bad system, if you ask me, and designed to work against early-enough intervention for Apraxia. But it is in keeping with the very crappy health care system we have that favors intervention only once a problem has gotten out of hand and denies any assistance on prophylaxis to prevent a problem in the first place. That's bass ackwards, if you ask me, and even from a purely cost-control perspective (since it would be naive to assert that insurance companies are interested in people--lord knows that money is the number one priority), it makes no sense. It's precisely like all those situations where tens of thousands of dollars worth of surgery and g-tube maintenance is covered, but feeding therapy is not.
OK; I'm done with my rant here.
Anyway, we'll be working with Hallie and if need be train ourselves in the potentially useful therapy tactics (PROMPT, Kaufman praxis, what have you) to see if those things cannot help our kid find her voice.
Meanwhile, Hallie has definitely experienced an expressive signing explosion this week. She's picked up the following: dog (which she signed when she wanted her stuffed doggie), hot, cold, potty (which she used today to indicate that she had pooped in her diaper!), hat, cookie, apple, bear, help (which she is also using correctly), car, go, stop, and a bunch of others that I am now forgetting. She knows at least 20 signs and possibly many more than that---what happens is that she hears a word and signs it and that's how we realize she knows the sign. A few times this week, she signed 'yes' when the word 'yes' came up on the video but before Rachel had produced or spoken the word. I am not sure that this indicates that our girl can read, but what it does indicate is that she is familiar with sequencing and has a great memory.
On top of this, she is also experiencing a surge in her fine motor skills. I bought her a puzzle with shapes on it--it's one of those wooden ones with small pegs, and it contains a square, pentagon, rectangle, oval, circle, and triangle. We unwrapped it for her on Monday night and she took out all the pieces and put them all back in correctly, several times in a row. She is also using her stacking rings (she never used to do that), sorting her blocks like a champ now, and pretend feeding me (from one of the plastic Margarita cups she found in the sideboard and claimed as her own--apparently she's interested in hosting a cocktail party at some point soon). Anyway, she's a really cool kid and very smart and even if she doesn't ever talk in a conventional way, it's clear to us that she has a lot going on in that little head of hers and that she's finding ways of letting us know all about it.
We really do need to teach Ami sign, though: Hallie was signing all day for her doggie (which was upstairs) and Ami had no idea what she was doing or what the kid wanted. Sharon and I have both learned a lot of sign so far (Sharon is MUCH better than I am) and cousins Adam and Megan are learning a ton, and the rest of the Levy family (Sharon's sister, brother in law, and the other kids) have expressed a great deal of interest in learning, too. And regardless of what happens speech-wise, we really want Hallie to keep up with her signing. I think that a second language, whatever that language is, opens up new parts of the brain and opens up new worlds to whoever masters (or attempts to master) the language. It's a good thing all around. We had always planned to raise bilingual kids (we thought maybe Russian, Spanish, or after Karina was born, Chinese) but if it's ASL, that's fine too.
Hallie still has a bit of a cold and is still snarfly as a consequence (hence last night's refund episode), so there's been more vomit this week than any week in the recent past, but we are hoping she gets over this soon. We've taken to trying to get 6 ounces of baby food in her at every meal (up from four) and this is going well (for the most part, though the second or third time around after an upchucking session she's not nearly as cooperative as the first). And we're also working on getting her to drink out of an open cup (plastic, or the nosey cups), which she is enjoying, likely as not due to the novelty of the experience. We're not sure what her weight is right now, but will have to check this out pretty darned soon.
Finally, both of Hallie's 'stomach teeth' (canines) have broken through now, and we are still waiting on the two eye teeth. We know that at least two and maybe all of the first-year molars are through the gums (though not entirely in), but she wouldn't let me check today (which was probably a good thing for my poor fingers), so I can't say for sure what is going on with them.
Blogger is giving me one of its oh-so-fun-super-hard-times with uploading images, so I'll have to do these separately. I'm also busy downloading software to back up a (broken) RAZR to my hard drive (let's hope it works, because otherwise all of you whom I know IRL will never hear from me again because I've lost your phone numbers...). So more later...I promise!
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