in a row is our vomit-free streak. Alas, it was broken today, several times. It could be teething, it could be returning to the 6 ml of the Omega 3-6-9s or it could be that Hallie is just as allergic to soy as she is to dairy (she had some soy cheese and pureed edamame today). We'll cut out the soy, up the cal-mag and hope for the best. But at least we got 7 days. Which makes it a total of 11 days in 2008 that were vomit-free (not counting a few urps, here and there).
The other news: we heard a lot of "mmmms" today from our girl, and she even whined "maaaaa---meee" a few times. I am pretty certain that she did not mean 'mommy' in any conventional way, but hopefully she'll connect the two soon (and then figure out what she's going to call each of us!). What a sweet Valentine's Day gift to us. It even made the vomit easier to clean up. Well, sort of. OK, not really. Nothing really makes the vomit easier to clean up, other than catching it in a bucket or her food tray!
May your Valentine's Day be filled with sweet utterings from your loved ones!
How Old is Hallie?
How Old is Lea?
Thursday, February 14, 2008
Monday, February 11, 2008
A Mostly Picture Post
After realizing that we had taken very few pictures of our girl last week (and even let the camera battery run down), I've been trying to make up for lost time. It's helped that we've had a few fun events this past weekend that we wanted to commemorate, too.
First, our friend Kat (who is also an adult reflux adviser) came to visit on Friday. She brought Hallie a belated holiday gift/early Valentine's Day gift, and Hallie, needless to say, loved it.
If it's Elmo (or Sesame Street), Hallie adores it.
Witness her royal treatment of 'the boys,' as I like to think of them. Ever since Renee and Kim gave Hallie these finger puppets right after she got home from the hospital, she's been mad about them. Never mind that both of their hair is a bit shorter and more matted than when we received them. (Hallie has sharp teeth, and they will rival any barber's razor). She always pairs them up and frequently carries around big Ernie and little Ernie or big Bert and little Bert. It's interesting to watch her categorize. She has also begun saying a version of "Ernie" (it sort of has a 'd' or 't' in it; I am not certain why, but we'll take any name approximation) and now, along with calling Big Bird "buh buh" she calls Bert, "beh".
This next shot is a set-up. I just thought that pockets were the ideal place for Hallie's pals:
Little Ernie and Bert are nice stand-ins for Renee, who came over for her weekly fix of Signing Times, on Friday, too.
Friday night, cousin Megan and Grammy drove down to see our girl. Actually, Grammy came down to see Hallie and, while this was a bonus for Megan, she was here to get some help on her super-cool project on Northfield from Aunt Sharon. The two of them pulled all-nighters to make a very excellent model of the attraction that Megan devised for the town in which she lives. They also had fun at Pearl buying all sorts of creative supplies. I hope that Meg gets me a picture of the final results---I promise to post it. It's great having an aunt who is an architect.
But even if Megan was mostly here to do work, she couldn't resist playing with her littlest cousin. Here's a nice shot of our young keyboardist making a racket:
And, then, if that wasn't enough, the three of us and Megan drove down to Aunt Laura and Uncle Bryan's yesterday to celebrate cousin Adam's third birthday. It's funny that he and Hallie are a mere 16 months apart (to the day...today is Hallie's 20 month birthday). The party was a nice, family-only event that was replete with firetrucks (on the yummy and beautiful cake) and balloons. Hallie was especially fond of the latter, as you can see in these shots:
Here's a cute shot of the little cousins hugging Hallie, sandwich-style:
And here's a great picture of the birthday boy blowing out his candles:
Of course, any day in Northfield would be incomplete without a snuggle from Aunt Laura.
Aunt Laura was impressed and surprised at how heavy Hallie is getting.
And, then, just because, here's a great shot of Hallie playing in a sunbeam on the office floor yesterday. It's funny how much she resembles Bailey, our old dog, who used to do that.
And, finally, here's one of Hallie doing some homework. Busy, busy, busy...Which reminds me that I need to do some, too.
But, before I go, I just remembered that I saved the best news for last: we have now made it FIVE full days without a single vomit (and just two urps). This is a huge record and I hope we break it today!
First, our friend Kat (who is also an adult reflux adviser) came to visit on Friday. She brought Hallie a belated holiday gift/early Valentine's Day gift, and Hallie, needless to say, loved it.
If it's Elmo (or Sesame Street), Hallie adores it.
Witness her royal treatment of 'the boys,' as I like to think of them. Ever since Renee and Kim gave Hallie these finger puppets right after she got home from the hospital, she's been mad about them. Never mind that both of their hair is a bit shorter and more matted than when we received them. (Hallie has sharp teeth, and they will rival any barber's razor). She always pairs them up and frequently carries around big Ernie and little Ernie or big Bert and little Bert. It's interesting to watch her categorize. She has also begun saying a version of "Ernie" (it sort of has a 'd' or 't' in it; I am not certain why, but we'll take any name approximation) and now, along with calling Big Bird "buh buh" she calls Bert, "beh".
This next shot is a set-up. I just thought that pockets were the ideal place for Hallie's pals:
Little Ernie and Bert are nice stand-ins for Renee, who came over for her weekly fix of Signing Times, on Friday, too.
Friday night, cousin Megan and Grammy drove down to see our girl. Actually, Grammy came down to see Hallie and, while this was a bonus for Megan, she was here to get some help on her super-cool project on Northfield from Aunt Sharon. The two of them pulled all-nighters to make a very excellent model of the attraction that Megan devised for the town in which she lives. They also had fun at Pearl buying all sorts of creative supplies. I hope that Meg gets me a picture of the final results---I promise to post it. It's great having an aunt who is an architect.
But even if Megan was mostly here to do work, she couldn't resist playing with her littlest cousin. Here's a nice shot of our young keyboardist making a racket:
And, then, if that wasn't enough, the three of us and Megan drove down to Aunt Laura and Uncle Bryan's yesterday to celebrate cousin Adam's third birthday. It's funny that he and Hallie are a mere 16 months apart (to the day...today is Hallie's 20 month birthday). The party was a nice, family-only event that was replete with firetrucks (on the yummy and beautiful cake) and balloons. Hallie was especially fond of the latter, as you can see in these shots:
Here's a cute shot of the little cousins hugging Hallie, sandwich-style:
And here's a great picture of the birthday boy blowing out his candles:
Of course, any day in Northfield would be incomplete without a snuggle from Aunt Laura.
Aunt Laura was impressed and surprised at how heavy Hallie is getting.
And, then, just because, here's a great shot of Hallie playing in a sunbeam on the office floor yesterday. It's funny how much she resembles Bailey, our old dog, who used to do that.
And, finally, here's one of Hallie doing some homework. Busy, busy, busy...Which reminds me that I need to do some, too.
But, before I go, I just remembered that I saved the best news for last: we have now made it FIVE full days without a single vomit (and just two urps). This is a huge record and I hope we break it today!
Friday, February 8, 2008
Finally, a real well-baby checkup
Hallie had her somewhat delayed 18 month checkup this past Wednesday and I've been trying to get around to blogging about it ever since. First, it was notable that the reception staff no longer knows us by name. It used to be, last spring and summer, when we were there on average once to twice a week, they had our charts pulled before we could exit the elevator door. Not kidding. On Wednesday, they had no idea who we were. That was lovely. (On a side note, the CVS folks see us so frequently that they hand me Hallie's various meds without me having to say a word, let alone identify us. It probably doesn't help that I am known to hang out in CVS giving Hallie a bottle while praying fervently that she finally goes down for a nap in her stroller).
Anyway, I digress. We waited a few minutes for Leanne, Hallie's wonderful nurse, to call us in for assessment and Hallie ran around the waiting room, waving at kids, playing with the toys (I ran after her pumping her little hands with sanitizer) and having a blast. When Leanne called us in, we stripped her and checked her head circumference (44.8 cm or 17.64 inches) and height (32.3 inches or .82 meters). And then we plopped her on the scale (it was the heavy one in the back; and of course we know this. We have, in the past, actually asked them to check her weight on both scales on the same day. They are about two ounces apart). We were shocked. She is now 25 lbs. 2 ounces (11.39 kilos) (which is just shy of 20 times her birth weight). She has gained about 10 ounces in ten days (conservatively) and this is with all of the vomiting (no doubt in part this is attributable to our double-feedings, since we will refeed her after every significant, seemingly belly-emptying upchuck). But still, Hallie's weight astounded me and we have decided to cut back on her last bottle of the night. Instead of basically compelling her to take 8 ounces at bedtime (something that Sharon can do but I cannot), we just are going to let her take what she wants. This ends up being 3-5 ounces, and that seems fine. It'll mean more sleep for mommy, earlier crib time for Hallie, and some end of the bottle in sight for the whole family.
We attribute a lot of this rapid weight gain (she went from 21 lbs in early October to 25 in early February) to the fact that she is absorbing more nutrients from her food. This is part and parcel to getting rid of the cow dairy in her diet.
When Rubin (her excellent doctor) came in, he was beyond impressed with her. The first thing he said was that he had been comparing notes with our GI fellow (Friedlander), and that he knew things must be going well since NO ONE had heard from us for quite some time.
But seeing Hallie is what really impressed Rubin. He had never seen Hallie walk before, and this was the first time that she vocalized at all for him. Hallie's coloring is good and clearly she is thriving (she is at 50th percentile for weight, 50th for height, and finally made it on the charts for head circumference at somewhere between the 5th and 10th percentiles. I asked Rubin if he was concerned about this and he said that he was not---her growth curve for HC is exclellent and Sharon also has, as Sharon puts it, a pinhead.). Rubin did suggest that, as we begin to move towards more solids, we might want to get Hallie tested for other food allergies or intolerances (we agree---we strongly suspect an egg allergy and would not dare to give her tree nuts without hard data that she isn't allergic to them). But that's down the road. Meanwhile, even though we are still on mostly stage 2s with some thicker fruit purees, Rubin was heartened to hear about the cheerios and other assorted relatively-meltable crunchy foods and he thinks that there's little reason for a huge amount of concern (largely because of the fact that he has never known us to drop the ball).
So, the appointment was all lovey-dovey (and Hallie was generally happy being there, except for when Leanne stuck her with the HEP-A needle---but at least she only had one shot). I did have to remind Rubin that we still need to be vigilant because of the extremely high propensity that micropreemies have for all sorts of learning and behavioral issues down the road, and he agreed that this vigilance was warranted, but from his perspective, he couldn't be happier right now. We agree.
And we especially agree since the omegas are still working their magic. Hallie has begun to take an interest in stacking blocks and her stacking rings (she never used to want to do this at all, and perhaps the timing is coincidental, but still, the biggest issue is that she is staying 'on-task' a lot more these days and has a much longer attention span and a much lower frustration level than she has had up until this point. She is also happier in general, and this with teething (I suspect some stomach teeth are coming in now...is there no reprieve?). And the talking is going really well--she says 'kitty' and 'teddy bear' much more articulately now, and has extended 'bu bu' (big bird) into something getting closer to big bird (not quite there yet, though). She also articulated "m" for the first time this morning (two or three times) and I am hoping that we hear a 'mama' or variation thereof out of our girl yet.
So it's been a good week. And I almost forgot: we have now had two vomit free days in a row again, bringing the total for the year to 8 vomit free days (three apparently urp free; the only reason I qualify this is that two of those days were nanny-days and not mommy-days and so we were not on hand to witness this). And we have 2 2-day stretches. So February is ending up to be a bit better than it had started out in that respect.
Meanwhile, I've been an awful mama and we've taken very few pictures of our girl this week. But I did take a few last night of her chubby little thighs.
And, just so you know, these are all muscle...something very quickly revealed when Hallie leg thumps you with full force...oy.
Finally, a word about the cup. We've been giving Hallie Coach Farm Goat Yogurt drink, which she LOVES (I think it's really weird tasting---it's kind of like soupy runny chevre). Hallie especially enjoys it from a straw in the bottle (she has quite a good suck now, when she wants to) but that's sort of messy. So last night I gave her some in the cup she's holding in this picture. She immediately realized it was a Sesame Street cup and started to name the characters. Then she realized that the cup was even more fun: the straw pulls right out and is a corrogated texture. Better yet, the lid pops off EASILY. How fun! How messy! Needless to say, I won't be using this cup with her again for quite some time.
Anyway, I digress. We waited a few minutes for Leanne, Hallie's wonderful nurse, to call us in for assessment and Hallie ran around the waiting room, waving at kids, playing with the toys (I ran after her pumping her little hands with sanitizer) and having a blast. When Leanne called us in, we stripped her and checked her head circumference (44.8 cm or 17.64 inches) and height (32.3 inches or .82 meters). And then we plopped her on the scale (it was the heavy one in the back; and of course we know this. We have, in the past, actually asked them to check her weight on both scales on the same day. They are about two ounces apart). We were shocked. She is now 25 lbs. 2 ounces (11.39 kilos) (which is just shy of 20 times her birth weight). She has gained about 10 ounces in ten days (conservatively) and this is with all of the vomiting (no doubt in part this is attributable to our double-feedings, since we will refeed her after every significant, seemingly belly-emptying upchuck). But still, Hallie's weight astounded me and we have decided to cut back on her last bottle of the night. Instead of basically compelling her to take 8 ounces at bedtime (something that Sharon can do but I cannot), we just are going to let her take what she wants. This ends up being 3-5 ounces, and that seems fine. It'll mean more sleep for mommy, earlier crib time for Hallie, and some end of the bottle in sight for the whole family.
We attribute a lot of this rapid weight gain (she went from 21 lbs in early October to 25 in early February) to the fact that she is absorbing more nutrients from her food. This is part and parcel to getting rid of the cow dairy in her diet.
When Rubin (her excellent doctor) came in, he was beyond impressed with her. The first thing he said was that he had been comparing notes with our GI fellow (Friedlander), and that he knew things must be going well since NO ONE had heard from us for quite some time.
But seeing Hallie is what really impressed Rubin. He had never seen Hallie walk before, and this was the first time that she vocalized at all for him. Hallie's coloring is good and clearly she is thriving (she is at 50th percentile for weight, 50th for height, and finally made it on the charts for head circumference at somewhere between the 5th and 10th percentiles. I asked Rubin if he was concerned about this and he said that he was not---her growth curve for HC is exclellent and Sharon also has, as Sharon puts it, a pinhead.). Rubin did suggest that, as we begin to move towards more solids, we might want to get Hallie tested for other food allergies or intolerances (we agree---we strongly suspect an egg allergy and would not dare to give her tree nuts without hard data that she isn't allergic to them). But that's down the road. Meanwhile, even though we are still on mostly stage 2s with some thicker fruit purees, Rubin was heartened to hear about the cheerios and other assorted relatively-meltable crunchy foods and he thinks that there's little reason for a huge amount of concern (largely because of the fact that he has never known us to drop the ball).
So, the appointment was all lovey-dovey (and Hallie was generally happy being there, except for when Leanne stuck her with the HEP-A needle---but at least she only had one shot). I did have to remind Rubin that we still need to be vigilant because of the extremely high propensity that micropreemies have for all sorts of learning and behavioral issues down the road, and he agreed that this vigilance was warranted, but from his perspective, he couldn't be happier right now. We agree.
And we especially agree since the omegas are still working their magic. Hallie has begun to take an interest in stacking blocks and her stacking rings (she never used to want to do this at all, and perhaps the timing is coincidental, but still, the biggest issue is that she is staying 'on-task' a lot more these days and has a much longer attention span and a much lower frustration level than she has had up until this point. She is also happier in general, and this with teething (I suspect some stomach teeth are coming in now...is there no reprieve?). And the talking is going really well--she says 'kitty' and 'teddy bear' much more articulately now, and has extended 'bu bu' (big bird) into something getting closer to big bird (not quite there yet, though). She also articulated "m" for the first time this morning (two or three times) and I am hoping that we hear a 'mama' or variation thereof out of our girl yet.
So it's been a good week. And I almost forgot: we have now had two vomit free days in a row again, bringing the total for the year to 8 vomit free days (three apparently urp free; the only reason I qualify this is that two of those days were nanny-days and not mommy-days and so we were not on hand to witness this). And we have 2 2-day stretches. So February is ending up to be a bit better than it had started out in that respect.
Meanwhile, I've been an awful mama and we've taken very few pictures of our girl this week. But I did take a few last night of her chubby little thighs.
And, just so you know, these are all muscle...something very quickly revealed when Hallie leg thumps you with full force...oy.
Finally, a word about the cup. We've been giving Hallie Coach Farm Goat Yogurt drink, which she LOVES (I think it's really weird tasting---it's kind of like soupy runny chevre). Hallie especially enjoys it from a straw in the bottle (she has quite a good suck now, when she wants to) but that's sort of messy. So last night I gave her some in the cup she's holding in this picture. She immediately realized it was a Sesame Street cup and started to name the characters. Then she realized that the cup was even more fun: the straw pulls right out and is a corrogated texture. Better yet, the lid pops off EASILY. How fun! How messy! Needless to say, I won't be using this cup with her again for quite some time.
Sunday, February 3, 2008
The Alpha and The Omegas...
Well, it's been a week since Hallie's been on Nordic Naturals Omega Complete 3-6-9. I read about the importance of these omega fatty acids for brain and speech development in Marilyn Agin's The Late Talker book and on the Apraxia children's boards that I've joined and was convinced that it was worth trying the supplement. There's been very little formal testing of these supplements in speech-delayed and speech-disordered children, and what testing has been done has been done on very small sample sizes (which of course garners less usable data than large-scale randomized testing with controls). Still, there's been some research, and even more research with children on the Autism spectrum and the data all suggests that these supplements can have a profound impact on speech, mood, attention span and the like. It's also clear that there is very little downside to these supplements other than getting your kid to take them.
So, what's the verdict?
Well, Hallie has yet to recite War and Peace or Crime and Punishment (yes, Russian writers in the 19th century were often fond of ampersands. Fathers and Sons--more correctly Children and Sons--is another great example of this). But she has done A LOT more talking and much more mimicking and babbling. She would NEVER willingly mimic us before this past week. It could take an hour to drag a one-word verbal mimic out of her (though it takes no time at all to get her to mimic a gesture or sign on command). We have heard a lot more word approximations than ever before and she has repeated these over and over. So, while we are not experiencing a miracle, we are seeing very, very perceptible progress. And she has yet to have an 'off' speaking day on these things.
Alas, there is a downside to the Omegas. I guess that most kids don't have violent and unrelenting reflux. Hallie, however, does. And these are, after all, ACIDS. And acid is not good for acid reflux (naturally). The lemon flavor of the oil, while very, very tasty for Hallie, who opens her mouth wide for the stuff, probably isn't helping, either. This--on top of the dairy that Ami mistakenly gave her this week--has had her system out of whack until today. It's hard to filter out things in terms of causality, but we're not ruling out that the Omegas are responsible for some of the chronic vomiting.
So now I find myself trying to Alkalinize Hallie's system. This isn't too hard to do--I figure that we can mimic the enteric coating that Omega pills designed for GERD-ish adults have by giving Hallie some Mylanta (which is calcium/magnesium) prior to giving her the acids and making sure that Hallie takes these on a pretty full stomach (before, we were giving them to her on an empty stomach morning and night). So far, so good. We're getting in a teaspoon of the oil (5ml) in the evening, after 5ml of mylanta and dinner. I'm hoping that this dose remains high enough to see good speech effects and that, now that the dairy is finally out of her system--as evidenced by an improving poop quality (yes, I know, TMI), we'll be back in business. Indeed, today would have been an urp- and vomit-free day had there not been a french fry 'event.' But this was mechanical, so it does not worry me. And Hallie's mood has been FABULOUS all day. In fact, she's been happy all week, vomiting and all. So, I am hoping that, as with the Goat milk and the Simply Thick, a bit of research helps move us along to a better place.
In the meantime, I am left wondering when I became a nutritionist (wasn't neonatology student and a rotation in GI with a subspecialty in reflux enough?)
So, what's the verdict?
Well, Hallie has yet to recite War and Peace or Crime and Punishment (yes, Russian writers in the 19th century were often fond of ampersands. Fathers and Sons--more correctly Children and Sons--is another great example of this). But she has done A LOT more talking and much more mimicking and babbling. She would NEVER willingly mimic us before this past week. It could take an hour to drag a one-word verbal mimic out of her (though it takes no time at all to get her to mimic a gesture or sign on command). We have heard a lot more word approximations than ever before and she has repeated these over and over. So, while we are not experiencing a miracle, we are seeing very, very perceptible progress. And she has yet to have an 'off' speaking day on these things.
Alas, there is a downside to the Omegas. I guess that most kids don't have violent and unrelenting reflux. Hallie, however, does. And these are, after all, ACIDS. And acid is not good for acid reflux (naturally). The lemon flavor of the oil, while very, very tasty for Hallie, who opens her mouth wide for the stuff, probably isn't helping, either. This--on top of the dairy that Ami mistakenly gave her this week--has had her system out of whack until today. It's hard to filter out things in terms of causality, but we're not ruling out that the Omegas are responsible for some of the chronic vomiting.
So now I find myself trying to Alkalinize Hallie's system. This isn't too hard to do--I figure that we can mimic the enteric coating that Omega pills designed for GERD-ish adults have by giving Hallie some Mylanta (which is calcium/magnesium) prior to giving her the acids and making sure that Hallie takes these on a pretty full stomach (before, we were giving them to her on an empty stomach morning and night). So far, so good. We're getting in a teaspoon of the oil (5ml) in the evening, after 5ml of mylanta and dinner. I'm hoping that this dose remains high enough to see good speech effects and that, now that the dairy is finally out of her system--as evidenced by an improving poop quality (yes, I know, TMI), we'll be back in business. Indeed, today would have been an urp- and vomit-free day had there not been a french fry 'event.' But this was mechanical, so it does not worry me. And Hallie's mood has been FABULOUS all day. In fact, she's been happy all week, vomiting and all. So, I am hoping that, as with the Goat milk and the Simply Thick, a bit of research helps move us along to a better place.
In the meantime, I am left wondering when I became a nutritionist (wasn't neonatology student and a rotation in GI with a subspecialty in reflux enough?)
Wednesday, January 30, 2008
Hallie in her Own Time (and in her Own Way)
This'll be fast because I'm supposed to be sleeping (yes, you guys hear that a lot). (EDIT: Blogger has been a nightmare with pictures, so this is anything but fast...indeed it took twelve hours to post this...I did sleep part of the time, though!)
So, after provoking huge amounts of anxiety in me about the 'no talking' thing, Hallie decided tonight to mix things up a bit. Again.
Tonight, she started practicing her 'b's again and repeatedly said "buh-buh" every time I pointed at Big Bird. She also said something that sounds a lot like "whassthat?" nearly all evening. And she tried to say "chair" (going over to her high chair). It came out like "chuh" but we'll take it. "It's Telly" (again, to Telly, on the television, naturally) came out very clear.
Is this proto-talking a phase? The not-talking a phase? Is she just not interested in telling us stuff one day, and interested the next? Much as we used to want to get into our wonderful old dog, Bailey's, head and find out what she was thinking about (we used to say to one another: 'boy I wish she could just talk to us for one day; I have so many questions to ask her'), we now feel the same way about Hallie (though want to communicate with her even more).
So, who knows? Like everything else, she seems to be doing things her way. Do they conform to typical development? Deviate from it? Who can say. All I know is that she'd be giving me a bunch of gray hairs if I didn't already have them!
And, because I've been a neglectful photo poster, I'm adding in the pics from this past weekend's concert.
This one is of a very cute Hannah and Adam.
In this one, Hallie is making her french-fry eating debut. Doesn't this look a lot like a normal lunch? We're not quite there yet, but we'll make it (although we did have a bit setback today when it was accidentally confirmed to us that Hallie is indeed cow-dairy intolerant. That seems to be at the root of a lot of upchucks in our past).
And in these two, Hallie is engaged in a very engrossing game of 'oh-no-peek-a-boo' with Adam and Hannah. She doesn't quite get that you cover your eyes in peek-a-boo (though she does use things like blankets to cover her head). Instead, she clasps her cheeks. Anyway, she thought this was hilarious and cracked up the entire time.
LATER: Since Blogger is being annoying, I guess I'll write more while I wait for the pics to finally post.
Anyway, Hallie had a super time at the concert and we were thrilled about the fries. And the mamas had a pretty great weekend, all totaled. Friday night's birthday dinner was FABULOUS (it was at a great new-ish restaurant called James that we'd been meaning to try but haven't had the opportunity to since we rarely go out anymore. The best part is that James, along with numerous other fine dining establishments, is located three blocks from our house. So, even though it was frigid out, we were able to walk. I love living in Philly for that reason.
Saturday's concert obviously rocked, and we got to spend time with our niece Megan who is getting help from Sharon on a school project.
And on Monday, Ellen (Hallie's first friend and nurse from the ICN) came over to babysit/spend time with Hal while we went out for Restaurant Week (to a very excellent place we'd been before, called Meritage. They have a great wine list, though we obviously did not choose from its very choicest offerings).
So, after provoking huge amounts of anxiety in me about the 'no talking' thing, Hallie decided tonight to mix things up a bit. Again.
Tonight, she started practicing her 'b's again and repeatedly said "buh-buh" every time I pointed at Big Bird. She also said something that sounds a lot like "whassthat?" nearly all evening. And she tried to say "chair" (going over to her high chair). It came out like "chuh" but we'll take it. "It's Telly" (again, to Telly, on the television, naturally) came out very clear.
Is this proto-talking a phase? The not-talking a phase? Is she just not interested in telling us stuff one day, and interested the next? Much as we used to want to get into our wonderful old dog, Bailey's, head and find out what she was thinking about (we used to say to one another: 'boy I wish she could just talk to us for one day; I have so many questions to ask her'), we now feel the same way about Hallie (though want to communicate with her even more).
So, who knows? Like everything else, she seems to be doing things her way. Do they conform to typical development? Deviate from it? Who can say. All I know is that she'd be giving me a bunch of gray hairs if I didn't already have them!
And, because I've been a neglectful photo poster, I'm adding in the pics from this past weekend's concert.
This one is of a very cute Hannah and Adam.
In this one, Hallie is making her french-fry eating debut. Doesn't this look a lot like a normal lunch? We're not quite there yet, but we'll make it (although we did have a bit setback today when it was accidentally confirmed to us that Hallie is indeed cow-dairy intolerant. That seems to be at the root of a lot of upchucks in our past).
And in these two, Hallie is engaged in a very engrossing game of 'oh-no-peek-a-boo' with Adam and Hannah. She doesn't quite get that you cover your eyes in peek-a-boo (though she does use things like blankets to cover her head). Instead, she clasps her cheeks. Anyway, she thought this was hilarious and cracked up the entire time.
LATER: Since Blogger is being annoying, I guess I'll write more while I wait for the pics to finally post.
Anyway, Hallie had a super time at the concert and we were thrilled about the fries. And the mamas had a pretty great weekend, all totaled. Friday night's birthday dinner was FABULOUS (it was at a great new-ish restaurant called James that we'd been meaning to try but haven't had the opportunity to since we rarely go out anymore. The best part is that James, along with numerous other fine dining establishments, is located three blocks from our house. So, even though it was frigid out, we were able to walk. I love living in Philly for that reason.
Saturday's concert obviously rocked, and we got to spend time with our niece Megan who is getting help from Sharon on a school project.
And on Monday, Ellen (Hallie's first friend and nurse from the ICN) came over to babysit/spend time with Hal while we went out for Restaurant Week (to a very excellent place we'd been before, called Meritage. They have a great wine list, though we obviously did not choose from its very choicest offerings).
Monday, January 28, 2008
Paperwork, Scattered Thoughts, and Random (well, not so random) fears
It's way late (as usual) and I have tons of work that remains undone (also as usual), but one of the things that does not remain undone is the rather long questionnaire that I had to fill out for Hallie's speech assessment at CHOP. As I was filling it out (in my typically verbose manner), I kept thinking: "I do not want to be doing this, it should not be coming to this..." Of course, that changes nothing. I went through Hallie's rather extensive medical history, and realized how much I have become familiar with all of the terms and jargon associated with microprematurity. IVHs, ROP, PIEs, PDAs, and so on and so on. Ditto on the GI stuff---I can talk gastric emptying and swallow studies with the pros; I know my different PPIs and what drugs might do what (and how to administer them---boy do I wish I knew this back when our GIs never told us how to handle things; that would have avoided a whole lot of issues) and all about aspiration and preemie lungs and the like. As crazy as it sounds, I was hoping that I'd be able to leave it at that---that we'd be entering the world of terrible two tantrums and preschool applications and that I could, one by one, tick off the specialists we would no longer have to see, and I could begin to enjoy our kiddo, our survivor who, vomiting and scarring and all, managed somehow to squeak through.
I know this is selfish of me: how in the world can you be born at 23 weeks and just skate through?
So, here I find myself, learning all about apraxia and speech disorders and contemplating augmentive technologies and learning sign (and, for the record: I suck at languages, I really do. Never mind that I speak Russian, and can read--and could speak--Hebrew, and have ok receptive French if it's not too technical and can order margaritas and agnioletti with the best of them). I still am not a natural foreign language speaker and I am visual-pathway-learning deficient and, that said, I don't care if I do it wrong the first million times, if our baby needs to sign, I'll learn it. Who wouldn't).
There's a huge part of me that hopes I'm jumping the gun here, and just getting worked up in my typical way (sort of like Telly---one of the several words Hallie used once this week and that we may never, ever hear again--does on Sesame Street). And of course I hope that's the case, but my gut says--and has been saying for a very, very long time now--that that isn't the case, and that there is something wrong here. Language builds: you acquire sounds, first vowels and the consonants, and then you learn to string them together, and then you begin to attach meaning, and over time the phonology gets refined and you develop typical syntax, and you are speaking. That is the essence of verbal communication. Hallie's communication is so very different: she has screeches and vowel sounds (right now, "eh"s of various sorts) and did those late, and for quite some time. Then she finally began to babble, but only with the letter 'd.' Then she skipped stages and mixed up her consonants, but what was odd about that stage was that she would use a consonant a few times and then we'd stop hearing it. So she's had "k"s and "shs" and "s" and "d"s (haven't even heard those) and "b's" (most consistently) and a few pop outs with trilled "r"s and "m"s but over all, she just has her b's and she regresses as quickly or as more quickly as she advances. She might say "diaper" for a whole week, and then never again. Same with "paper." Same with "piggies" (though here she dropped the p and the s). And I could probably go on and on but find it too depressing, so I won't.
All of this regression, and these weird pop-outs (saying "up" once and never again) are typical of apraxia of childhood. Some kids get stuck where she is, which is at the no-real-usable-word stage. The form I completed asked me to note her first word and when she used it. What the heck was I supposed to say? Was I supposed to say the single word we heard all day---kitty---which isn't completely lost but this is the first time in at least a week I've heard it, even though she started saying it long before Christmas and used to say it a few times a day when prompted with a picture of a kitty? Was I supposed to say "b" which is what "Big Bird" who used to be "Buh Buh" and before that something that sounded even more like "Big Bird" but hasn't been in a while? Or does that even count, because Big Bird is no longer "B" but is a blank stare from my gorgeous little girl?
And it's not too comforting to think about the long-term prognosis because each case is so very different. Some kids learn to talk and do so fairly well. Others sound like they are non-hearing speakers of English and are yet fairly easy to understand. Others are not quite so readily understood by their peers. And still others require augmentation devices. And then, finally, there is global apraxia, and those who have that disorder find it hard to sign or make any kind of deliberate gesture and are trapped in a world where they want to communicate but cannot. As someone who loves to communicate, I find this all very very frightening and deeply depressing. And what I suppose is most maddening is that we simply won't know for quite some time what Hallie's long term prognosis will look like.
Meanwhile, I can already see some of Hallie's frustrations mounting. She tries to communicate and this sometimes does not work too well. Sometimes we do know what she wants and don't give it to her (as in: I want to stop eating, I want to climb on that dangerous item etc). But sometimes she is trying to tell us stuff and we don't know what it is. Sign has helped enormously: she has learned a few and teaches herself more each day. Tonight, she kept signing 'eat' when she was ready for bed (she wanted her bottle). We hope she picks up 'tired' soon---that will be major. And she can tell us she wants juice and not milk. Or a book---that one she's had for a while. And she is learning 'play.' And she seems so excited---thrilled---every time the Signing Time videos start. So this gives us some hope. But how can we make others learn sign so that she can communicate with them? And what about school---how in the world do we handle that when the only preschool that I have been able to find in the area that teaches ASL and accepts the hearing has a very small class size, no school bus, and is located across the city? What about her peers---how will she communicate with them? Right now, most of the kids around her are still verging on talking fluently, but that's changing quickly. Will they be so tolerant of her jargon when she's two? She's still babyish enough to pass for a baby, but every day she becomes more of a little girl, and I don't want her mind to be trapped in her body. She is so social, so expressive, so amazing, and so bright (she's begun categorizing and sorting her things, she clearly is engaged in some sort of pretend play, and she understands so much), and I don't want that part of her extinguished by the fact that she cannot communicate with others. I don't want her to be anxious or feel inadequate in any way, and she is so sensitive to everything around her.
Anyway, none of this is going to get resolved tonight, and my own anxiety about this is not going to help her much, so I will do the best I can do to advocate for her, to make sure that she gets the help that she needs, and I will try to have faith that her communication skills--whatever shape they take--will allow others to see her for the amazing little girl that she truly is.
And she really is amazing. I don't want this post to preempt the great things that DID happen this weekend. First, on Friday she actually did manage to set her record of two vomit-free (though only one was urp-free) days in a row. We are now up to a total of 6 days in 2008 that are without major vomit. And more importantly, she got to sample her very first french fry this weekend at the kids concert to which we took her, and Adam, Hannah, (and Megan) this weekend. Not only did she love it , but she kept it, and half of another one, down. And she did the same thing today. So this means that we are beginning to venture forth on the food front, and hopefully someday she'll be able to eat more typically. I know that she wants to and that, like the speech, we just have to find her a way to do so safely.
I'll post pictures of the grand event separately later on. For now, I'll just try to pack up my fears and trepidation and get some sleep so that I can be the best possible mama to Hallie in the morning. Even if she never has a name for me, she knows who I am and that my role in life is to play with her until at least one of us (usually me) is too exhausted to go on....
M
I know this is selfish of me: how in the world can you be born at 23 weeks and just skate through?
So, here I find myself, learning all about apraxia and speech disorders and contemplating augmentive technologies and learning sign (and, for the record: I suck at languages, I really do. Never mind that I speak Russian, and can read--and could speak--Hebrew, and have ok receptive French if it's not too technical and can order margaritas and agnioletti with the best of them). I still am not a natural foreign language speaker and I am visual-pathway-learning deficient and, that said, I don't care if I do it wrong the first million times, if our baby needs to sign, I'll learn it. Who wouldn't).
There's a huge part of me that hopes I'm jumping the gun here, and just getting worked up in my typical way (sort of like Telly---one of the several words Hallie used once this week and that we may never, ever hear again--does on Sesame Street). And of course I hope that's the case, but my gut says--and has been saying for a very, very long time now--that that isn't the case, and that there is something wrong here. Language builds: you acquire sounds, first vowels and the consonants, and then you learn to string them together, and then you begin to attach meaning, and over time the phonology gets refined and you develop typical syntax, and you are speaking. That is the essence of verbal communication. Hallie's communication is so very different: she has screeches and vowel sounds (right now, "eh"s of various sorts) and did those late, and for quite some time. Then she finally began to babble, but only with the letter 'd.' Then she skipped stages and mixed up her consonants, but what was odd about that stage was that she would use a consonant a few times and then we'd stop hearing it. So she's had "k"s and "shs" and "s" and "d"s (haven't even heard those) and "b's" (most consistently) and a few pop outs with trilled "r"s and "m"s but over all, she just has her b's and she regresses as quickly or as more quickly as she advances. She might say "diaper" for a whole week, and then never again. Same with "paper." Same with "piggies" (though here she dropped the p and the s). And I could probably go on and on but find it too depressing, so I won't.
All of this regression, and these weird pop-outs (saying "up" once and never again) are typical of apraxia of childhood. Some kids get stuck where she is, which is at the no-real-usable-word stage. The form I completed asked me to note her first word and when she used it. What the heck was I supposed to say? Was I supposed to say the single word we heard all day---kitty---which isn't completely lost but this is the first time in at least a week I've heard it, even though she started saying it long before Christmas and used to say it a few times a day when prompted with a picture of a kitty? Was I supposed to say "b" which is what "Big Bird" who used to be "Buh Buh" and before that something that sounded even more like "Big Bird" but hasn't been in a while? Or does that even count, because Big Bird is no longer "B" but is a blank stare from my gorgeous little girl?
And it's not too comforting to think about the long-term prognosis because each case is so very different. Some kids learn to talk and do so fairly well. Others sound like they are non-hearing speakers of English and are yet fairly easy to understand. Others are not quite so readily understood by their peers. And still others require augmentation devices. And then, finally, there is global apraxia, and those who have that disorder find it hard to sign or make any kind of deliberate gesture and are trapped in a world where they want to communicate but cannot. As someone who loves to communicate, I find this all very very frightening and deeply depressing. And what I suppose is most maddening is that we simply won't know for quite some time what Hallie's long term prognosis will look like.
Meanwhile, I can already see some of Hallie's frustrations mounting. She tries to communicate and this sometimes does not work too well. Sometimes we do know what she wants and don't give it to her (as in: I want to stop eating, I want to climb on that dangerous item etc). But sometimes she is trying to tell us stuff and we don't know what it is. Sign has helped enormously: she has learned a few and teaches herself more each day. Tonight, she kept signing 'eat' when she was ready for bed (she wanted her bottle). We hope she picks up 'tired' soon---that will be major. And she can tell us she wants juice and not milk. Or a book---that one she's had for a while. And she is learning 'play.' And she seems so excited---thrilled---every time the Signing Time videos start. So this gives us some hope. But how can we make others learn sign so that she can communicate with them? And what about school---how in the world do we handle that when the only preschool that I have been able to find in the area that teaches ASL and accepts the hearing has a very small class size, no school bus, and is located across the city? What about her peers---how will she communicate with them? Right now, most of the kids around her are still verging on talking fluently, but that's changing quickly. Will they be so tolerant of her jargon when she's two? She's still babyish enough to pass for a baby, but every day she becomes more of a little girl, and I don't want her mind to be trapped in her body. She is so social, so expressive, so amazing, and so bright (she's begun categorizing and sorting her things, she clearly is engaged in some sort of pretend play, and she understands so much), and I don't want that part of her extinguished by the fact that she cannot communicate with others. I don't want her to be anxious or feel inadequate in any way, and she is so sensitive to everything around her.
Anyway, none of this is going to get resolved tonight, and my own anxiety about this is not going to help her much, so I will do the best I can do to advocate for her, to make sure that she gets the help that she needs, and I will try to have faith that her communication skills--whatever shape they take--will allow others to see her for the amazing little girl that she truly is.
And she really is amazing. I don't want this post to preempt the great things that DID happen this weekend. First, on Friday she actually did manage to set her record of two vomit-free (though only one was urp-free) days in a row. We are now up to a total of 6 days in 2008 that are without major vomit. And more importantly, she got to sample her very first french fry this weekend at the kids concert to which we took her, and Adam, Hannah, (and Megan) this weekend. Not only did she love it , but she kept it, and half of another one, down. And she did the same thing today. So this means that we are beginning to venture forth on the food front, and hopefully someday she'll be able to eat more typically. I know that she wants to and that, like the speech, we just have to find her a way to do so safely.
I'll post pictures of the grand event separately later on. For now, I'll just try to pack up my fears and trepidation and get some sleep so that I can be the best possible mama to Hallie in the morning. Even if she never has a name for me, she knows who I am and that my role in life is to play with her until at least one of us (usually me) is too exhausted to go on....
M
Friday, January 25, 2008
Still Growing Strong...
I've been a bad mama---not only are there no pictures this time around, but when I went to take a picture of Hallie who was looking super cute in Sharon's scooter helmet, I realized that I had let the battery on the camera run down. Sigh. Can't keep everything together!
Anyway, it appears that molar number four is about to make its appearance. Hallie was super fussy at the beginning of this week and would NOT under any circumstances go down to sleep at night, not even after her bath. This is pretty atypical for her, and unfortunately not only amounted to hours spent by Sharon trying to get the kiddo to calm down and take her bottle but also involved cleaning up the vomit after the bottle came right back up at her. Sheesh... We are hoping that we get some reprieve. I suspect that we might already have since today has been very calm, despite the RSV shots that Hallie just got. Hallie's been in a super mood today and has gone down for her nap twice without protest (both times in the stroller. Yes, it's a little weird to buckle your kid into the stroller for a nap, but heck if it works, I won't complain!) I have not had the chance to do a mouth sweep but will later on and see if I feel anything.
Yesterday, was my birthday and in addition to getting a very lovely gift from Sharon--a first edition of Mikhail Gorbachev's Perestroika autographed by both him and Raisa, his wife--I was also spared going to the FEES study (flexible endoscopic evaluation study) with Hallie by virtue of the fact that I had to go to work. It turns out that, even though it was not the most fun anyway ever had, Hallie did do fairly well. According to the ENT, while her left vocal cord is still paralyzed, the right is compensating well and things are virtually at midline. The reflux swelling is gone, and there was no notation of laryngomalacia. So there are no structural reasons why Hallie cannot swallow food and indeed at least limited indication that, in small controlled sips while awake, she can do okay on thin liquids. We'll still thicken the bottles and even the juice she gets from her straw cup somewhat, but we will work on experimenting with backing off of the thickener after our next Swallow Study in March. At least that will mean one major expense (for the Simply Thick, which I get off of Ebay) might go away.
The more troubling stuff that we're dealing with, however, is Hallie's speech. She won't mimic speech at all -- with a rare, rare exception of mimicking 'up' for me during and after her bath last night; of course I was thrilled but today she no longer does this -- and she has lost all of the 'words' she used to have and has not replaced them with new ones. It is possible that she is working on something else and hence not interested in speech, but what is interesting is how quickly she is picking up sign and how thrilled she is to do it. We are very happy about that, but worried about the speech. So Sharon talked with the excellent speech therapist at CHOP yesterday (who followed up with me today and will call again on Monday....plus she remembered us from the swallow study in August and not only remembered us, but the precise stuff Hallie was dealing with. In a word, she was awesome). Anyway, Staci, the therapist, is not an expert in Apraxia (and neither is Jenny, our also excellent ST through Early Intervention). But the symptoms Hallie is presenting with -- especially given how amazingly social and interactive Hallie is -- are worrisome to her. So we will fill out some paperwork and get ourselves an official evaluation and perhaps also visit neurology (there is a nagging sense we both have about Hallie's unilateral left IVH level 1, but even moreso, about the 'speck' of blood in the frontal lobe that no one could ever explain. I'm not sure how knowing about the IVH or other bleed would change things, but still we are curious. And once we get this evaluation, if it turns out that she is diagnosed with Apraxia, we can begin to get speech therapy that is tailored to that disorder---it is, from what I understand, very specific and very different than the sort of play therapy Hallie now gets. We hope that Jenny can learn some tricks for things to do with Hallie because we LOVE Jenny and Jenny loves Hallie. But we can also see if my insurance (evil thing that it is) or Sharon's (once it kicks in on March 1st...a month later than we thought) can cover additional private therapy. We'd do anything for this kid (and any kid, really) and want her to be as happy as she can be. Meanwhile, we are thrilled that she adores her Signing Time videos and are eager to learn this language with her. But someday, someday, we'd both love to hear 'mama' or some variation on that come out of our little girl's mouth...
To this end, and on the aforementioned topic of supplements, we've begun to add in some Omega 3-6-9s from Nordic Naturals that are supposed to be amazingly helpful for the speech for other kids with issues speaking. We know that a lot of the omega fatty acids are things that babies get from their moms via the placenta in the 3rd trimester and, since Hallie never had one of these, it's something that she missed out on. They cannot hurt, and if nothing else, they add in a few calories.
On the calorie front: we're not changing anything and are going to keep on keeping on. Hallie weighed in today at 24 lbs. 6 ounces, which is an 11 ounce gain since last month. This did not sound like a lot to me since she was 23 lbs 11 ounces last month and 24 lbs 2 weeks ago (on a different scale) but when the nurse charted Hallie for me, it turns out that she moved from the 41st percentile to the 42nd percentile for her ACTUAL age of 19 plus months. That's tremendous and we're not complaining. So, while we won't back off on the Karo syrup or the flaxseed oil or the added goat milk powder, we are still on track and if we have a bad day, it's a bad day and not the end of the world.
On that note, I gotta go get ready: Sharon, Aunt Renee and Aunt Kim and I are going to go out and celebrate my birthday tonight. Ami is going to babysit Hallie and we're going to have a great time! It's the first time that the birthday club has gotten together for a whole night out since June (we used to celebrate each of our big days this way).
Anyway, it appears that molar number four is about to make its appearance. Hallie was super fussy at the beginning of this week and would NOT under any circumstances go down to sleep at night, not even after her bath. This is pretty atypical for her, and unfortunately not only amounted to hours spent by Sharon trying to get the kiddo to calm down and take her bottle but also involved cleaning up the vomit after the bottle came right back up at her. Sheesh... We are hoping that we get some reprieve. I suspect that we might already have since today has been very calm, despite the RSV shots that Hallie just got. Hallie's been in a super mood today and has gone down for her nap twice without protest (both times in the stroller. Yes, it's a little weird to buckle your kid into the stroller for a nap, but heck if it works, I won't complain!) I have not had the chance to do a mouth sweep but will later on and see if I feel anything.
Yesterday, was my birthday and in addition to getting a very lovely gift from Sharon--a first edition of Mikhail Gorbachev's Perestroika autographed by both him and Raisa, his wife--I was also spared going to the FEES study (flexible endoscopic evaluation study) with Hallie by virtue of the fact that I had to go to work. It turns out that, even though it was not the most fun anyway ever had, Hallie did do fairly well. According to the ENT, while her left vocal cord is still paralyzed, the right is compensating well and things are virtually at midline. The reflux swelling is gone, and there was no notation of laryngomalacia. So there are no structural reasons why Hallie cannot swallow food and indeed at least limited indication that, in small controlled sips while awake, she can do okay on thin liquids. We'll still thicken the bottles and even the juice she gets from her straw cup somewhat, but we will work on experimenting with backing off of the thickener after our next Swallow Study in March. At least that will mean one major expense (for the Simply Thick, which I get off of Ebay) might go away.
The more troubling stuff that we're dealing with, however, is Hallie's speech. She won't mimic speech at all -- with a rare, rare exception of mimicking 'up' for me during and after her bath last night; of course I was thrilled but today she no longer does this -- and she has lost all of the 'words' she used to have and has not replaced them with new ones. It is possible that she is working on something else and hence not interested in speech, but what is interesting is how quickly she is picking up sign and how thrilled she is to do it. We are very happy about that, but worried about the speech. So Sharon talked with the excellent speech therapist at CHOP yesterday (who followed up with me today and will call again on Monday....plus she remembered us from the swallow study in August and not only remembered us, but the precise stuff Hallie was dealing with. In a word, she was awesome). Anyway, Staci, the therapist, is not an expert in Apraxia (and neither is Jenny, our also excellent ST through Early Intervention). But the symptoms Hallie is presenting with -- especially given how amazingly social and interactive Hallie is -- are worrisome to her. So we will fill out some paperwork and get ourselves an official evaluation and perhaps also visit neurology (there is a nagging sense we both have about Hallie's unilateral left IVH level 1, but even moreso, about the 'speck' of blood in the frontal lobe that no one could ever explain. I'm not sure how knowing about the IVH or other bleed would change things, but still we are curious. And once we get this evaluation, if it turns out that she is diagnosed with Apraxia, we can begin to get speech therapy that is tailored to that disorder---it is, from what I understand, very specific and very different than the sort of play therapy Hallie now gets. We hope that Jenny can learn some tricks for things to do with Hallie because we LOVE Jenny and Jenny loves Hallie. But we can also see if my insurance (evil thing that it is) or Sharon's (once it kicks in on March 1st...a month later than we thought) can cover additional private therapy. We'd do anything for this kid (and any kid, really) and want her to be as happy as she can be. Meanwhile, we are thrilled that she adores her Signing Time videos and are eager to learn this language with her. But someday, someday, we'd both love to hear 'mama' or some variation on that come out of our little girl's mouth...
To this end, and on the aforementioned topic of supplements, we've begun to add in some Omega 3-6-9s from Nordic Naturals that are supposed to be amazingly helpful for the speech for other kids with issues speaking. We know that a lot of the omega fatty acids are things that babies get from their moms via the placenta in the 3rd trimester and, since Hallie never had one of these, it's something that she missed out on. They cannot hurt, and if nothing else, they add in a few calories.
On the calorie front: we're not changing anything and are going to keep on keeping on. Hallie weighed in today at 24 lbs. 6 ounces, which is an 11 ounce gain since last month. This did not sound like a lot to me since she was 23 lbs 11 ounces last month and 24 lbs 2 weeks ago (on a different scale) but when the nurse charted Hallie for me, it turns out that she moved from the 41st percentile to the 42nd percentile for her ACTUAL age of 19 plus months. That's tremendous and we're not complaining. So, while we won't back off on the Karo syrup or the flaxseed oil or the added goat milk powder, we are still on track and if we have a bad day, it's a bad day and not the end of the world.
On that note, I gotta go get ready: Sharon, Aunt Renee and Aunt Kim and I are going to go out and celebrate my birthday tonight. Ami is going to babysit Hallie and we're going to have a great time! It's the first time that the birthday club has gotten together for a whole night out since June (we used to celebrate each of our big days this way).
Sunday, January 20, 2008
The Good, The Bad, and the Yummy
This has been an odd end of the week and weekend, to say the least.
All week long, Hallie has been refusing to speak; even old chestnuts like "diaper," "big bird" and "teddy" had disappeared. This had Jenny, Hallie's speech therapist, pretty frustrated and upset. On Thursday, after she left, Ami, Hallie's nanny, was equally upset and vowed to redouble her effort to get Hallie to use whatever small vocabulary she has. I guess it was pretty hard to watch Hallie spend an hour avoiding saying the word "book."
So imagine my surprise when I received an email on Friday afternoon that Hallie's speech therapy had discontinued because she was insufficiently delayed. Within a split second, I had Jenny on the phone. She had been equally dismayed by the message when she got it that morning from Hallie's caseworker.
Can you say, oh no?
Hallie sure can.
But, as Jenny informed the Early Intervention caseworker, they'd be hearing from us as quickly as you could mouth the words 'speech therapy' (presuming, of course, that you are not Hallie).
Needless to say, I had shot off an email, left a message for on the never-answered office phone of said case worker, and tracked her down (via cell) in the field. I had also called her supervisor asking to file an appeal.
Jenny concurs with our assessment: Hallie does not use her words consistently enough to qualify them as real speech at this point, and, while her reception is pretty amazing, her spoken language needs lots of work. Not to mention the feeding issues. Which of course Jenny did mention when she spoke to the case worker, who retorted that OT could handle them. Except for the fact that our OT has not been trained to handle them, whereas our Speech Therapist has. Anyway, we're no shirking violets around here and we'll do what we need to do to get Jenny reinstated. But it's a major pain in the butt to have to deal with this.
Happily, there have been some positive developments in terms of communication and oral motor skills on Hallie's part this weekend and they have, for now, overshadowed our upcoming bureaucratic battle.
First, we received our first two Signing Times DVDs from Amazon and Hallie LOVES them. Not only does she enjoy watching them, but she has learned an entirely new (and pretty extensive, for her) repertoire of signs from them. She has been signing 'eat' all week (before the dvds came) but now signs 'milk' and means it, too. And she has randomly signed 'car', 'play,' and we think she tried to do 'fish' earlier on today. We have great hopes for progress in communicating. Like just now, we were giving her juice, and she signed milk. We replaced the juice with milk and avoided a mini Hallie tantrum (or at least whine).
Second, we finally made some REAL progress on solids. Friday evening, Hallie kept signing 'eat' and asking for Gerber Puffs. So I kept giving them to her. She must have had at least 25 of them, and none came back up. This was unprecedented. Plus, she was chewing really well and seemed to move the food around in her mouth much more effectively than ever before.
So, Saturday morning, spurred on by a lot of positive reinforcement from my preemie blog moms group members, we decided to try some solids with Hallie. Sharon was the intrepid one; I just stood back and let the magic happen. And it did: Hallie had 6 graham cracker sticks and a few fruit flavored cheerios for breakfast. It was clearly a lot of work for her to get these down, but she did it. She concentrated really hard on eating and sent very clear signs when she was all done. And after all this work, she seemed happy and relieved to swallow down her fruity purees. Lunch was a repeat performance, though she was a bit more tired and only had 2.5 graham crackers and a few bites of mushy pasta. She did drink a bit less than average, but this was okay.
And so, for a reward, we took Hallie to her first professional sporting event, the Philadelphia Kixx indoor soccer game. Actually, I lie: we would have gone regardless since Sharon's firm sponsors the team. Since we had a couple of extra tickets (turns out that kids don't need 'em and our niece Megan wasn't able to come down to visit after all this weekend), we brought Karina and Mark and Vanessa along. Everyone had a great time and the kids were really well behaved.
So, it ended up that yesterday was our second day this year that was both vomit and urp-free and our fifth day without vomit if you do not count the urps.
Today has been a bit harder--Hallie was tired and had a backlog of poop (more on this later). But she did manage to get in and keep down some cheerios and had a ball with the graham crackers and her latest food, rice chex. Even if they did not stay in, she was having fun and this counts for a lot. We're trying to be more laid back about things in general and are hoping that this sends her a signal.
Hallie's also been talking more, and finally learned how to blow. This seems like a small feat but we were a bit concerned that she seemed unable to do this. As Jenny has pointed out, Hallie is pretty low-tone around her mouth and we need to build up those muscles so that she can eat and talk more effectively. Of course, she's turned it into yet another tactic to avoid bites of food she doesn't want. What can I say, my kid is a master when it comes to avoidance tactics!
Anyway, back to the being laid back theme: it's a good thing we are since we had a few blowouts from both sides earlier this evening. First, Hallie splashed a bit of water on herself during her first (yes, there were more) bath and spewed forth some of her lunch (we have no idea how much). It's possible that she aspirated a tiny amount or it's possible that she was working on a 'gift' for her mommies.
I got her out of the tub and quickly dried her off and got her into some clean clothing. Then I began to smell some poop. This seemed odd since I had just cleaned her up from a pancake-poop (as we refer to it affectionately) immediately prior to her bath. But the smell was pretty strong. And got stronger. And then I felt the wet spot on my jeans. Fortunately, Sharon got home just around the time when I thought I'd need to deal with this alone. It turns out that Hallie pooped through her onesie, through her pants, onto me, got it onto Sharon, and ended up smearing numerous other objects and places before we were done. I guess she's cleared out now!
Which reminds me, I gotta go do my sixth load of laundry since Thursday. Oy!
All week long, Hallie has been refusing to speak; even old chestnuts like "diaper," "big bird" and "teddy" had disappeared. This had Jenny, Hallie's speech therapist, pretty frustrated and upset. On Thursday, after she left, Ami, Hallie's nanny, was equally upset and vowed to redouble her effort to get Hallie to use whatever small vocabulary she has. I guess it was pretty hard to watch Hallie spend an hour avoiding saying the word "book."
So imagine my surprise when I received an email on Friday afternoon that Hallie's speech therapy had discontinued because she was insufficiently delayed. Within a split second, I had Jenny on the phone. She had been equally dismayed by the message when she got it that morning from Hallie's caseworker.
Can you say, oh no?
Hallie sure can.
But, as Jenny informed the Early Intervention caseworker, they'd be hearing from us as quickly as you could mouth the words 'speech therapy' (presuming, of course, that you are not Hallie).
Needless to say, I had shot off an email, left a message for on the never-answered office phone of said case worker, and tracked her down (via cell) in the field. I had also called her supervisor asking to file an appeal.
Jenny concurs with our assessment: Hallie does not use her words consistently enough to qualify them as real speech at this point, and, while her reception is pretty amazing, her spoken language needs lots of work. Not to mention the feeding issues. Which of course Jenny did mention when she spoke to the case worker, who retorted that OT could handle them. Except for the fact that our OT has not been trained to handle them, whereas our Speech Therapist has. Anyway, we're no shirking violets around here and we'll do what we need to do to get Jenny reinstated. But it's a major pain in the butt to have to deal with this.
Happily, there have been some positive developments in terms of communication and oral motor skills on Hallie's part this weekend and they have, for now, overshadowed our upcoming bureaucratic battle.
First, we received our first two Signing Times DVDs from Amazon and Hallie LOVES them. Not only does she enjoy watching them, but she has learned an entirely new (and pretty extensive, for her) repertoire of signs from them. She has been signing 'eat' all week (before the dvds came) but now signs 'milk' and means it, too. And she has randomly signed 'car', 'play,' and we think she tried to do 'fish' earlier on today. We have great hopes for progress in communicating. Like just now, we were giving her juice, and she signed milk. We replaced the juice with milk and avoided a mini Hallie tantrum (or at least whine).
Second, we finally made some REAL progress on solids. Friday evening, Hallie kept signing 'eat' and asking for Gerber Puffs. So I kept giving them to her. She must have had at least 25 of them, and none came back up. This was unprecedented. Plus, she was chewing really well and seemed to move the food around in her mouth much more effectively than ever before.
So, Saturday morning, spurred on by a lot of positive reinforcement from my preemie blog moms group members, we decided to try some solids with Hallie. Sharon was the intrepid one; I just stood back and let the magic happen. And it did: Hallie had 6 graham cracker sticks and a few fruit flavored cheerios for breakfast. It was clearly a lot of work for her to get these down, but she did it. She concentrated really hard on eating and sent very clear signs when she was all done. And after all this work, she seemed happy and relieved to swallow down her fruity purees. Lunch was a repeat performance, though she was a bit more tired and only had 2.5 graham crackers and a few bites of mushy pasta. She did drink a bit less than average, but this was okay.
And so, for a reward, we took Hallie to her first professional sporting event, the Philadelphia Kixx indoor soccer game. Actually, I lie: we would have gone regardless since Sharon's firm sponsors the team. Since we had a couple of extra tickets (turns out that kids don't need 'em and our niece Megan wasn't able to come down to visit after all this weekend), we brought Karina and Mark and Vanessa along. Everyone had a great time and the kids were really well behaved.
So, it ended up that yesterday was our second day this year that was both vomit and urp-free and our fifth day without vomit if you do not count the urps.
Today has been a bit harder--Hallie was tired and had a backlog of poop (more on this later). But she did manage to get in and keep down some cheerios and had a ball with the graham crackers and her latest food, rice chex. Even if they did not stay in, she was having fun and this counts for a lot. We're trying to be more laid back about things in general and are hoping that this sends her a signal.
Hallie's also been talking more, and finally learned how to blow. This seems like a small feat but we were a bit concerned that she seemed unable to do this. As Jenny has pointed out, Hallie is pretty low-tone around her mouth and we need to build up those muscles so that she can eat and talk more effectively. Of course, she's turned it into yet another tactic to avoid bites of food she doesn't want. What can I say, my kid is a master when it comes to avoidance tactics!
Anyway, back to the being laid back theme: it's a good thing we are since we had a few blowouts from both sides earlier this evening. First, Hallie splashed a bit of water on herself during her first (yes, there were more) bath and spewed forth some of her lunch (we have no idea how much). It's possible that she aspirated a tiny amount or it's possible that she was working on a 'gift' for her mommies.
I got her out of the tub and quickly dried her off and got her into some clean clothing. Then I began to smell some poop. This seemed odd since I had just cleaned her up from a pancake-poop (as we refer to it affectionately) immediately prior to her bath. But the smell was pretty strong. And got stronger. And then I felt the wet spot on my jeans. Fortunately, Sharon got home just around the time when I thought I'd need to deal with this alone. It turns out that Hallie pooped through her onesie, through her pants, onto me, got it onto Sharon, and ended up smearing numerous other objects and places before we were done. I guess she's cleared out now!
Which reminds me, I gotta go do my sixth load of laundry since Thursday. Oy!
Funky Hallie
Just a couple of pictures to tide us over while I compose a more substantive post about Hallie-related developments.
Hallie LOVES her chair and often dresses to match it. She has a pretty unconventional way of getting in, though. She used to climb over the back; now she goes in over the arm instead. Nothing is easy and straightforward with this kid! She also likes to stack toys on the chair, then get in and retrieve them (the keys she stole from mommy were the 'toy' of choice on this particular occasion. Sometimes she ends up knocking the toy off of the chair when she gets into it, and then has to get out and start the whole process all over again. Very funny little kid, our girl!
This second shot is from last night. The hat lasted a few minutes and the shoes not terribly longer. But the whole outfit as an ensemble made us think of the mod squad.
A whole bunch of things have happened since Friday, so stay tuned...
Hallie LOVES her chair and often dresses to match it. She has a pretty unconventional way of getting in, though. She used to climb over the back; now she goes in over the arm instead. Nothing is easy and straightforward with this kid! She also likes to stack toys on the chair, then get in and retrieve them (the keys she stole from mommy were the 'toy' of choice on this particular occasion. Sometimes she ends up knocking the toy off of the chair when she gets into it, and then has to get out and start the whole process all over again. Very funny little kid, our girl!
This second shot is from last night. The hat lasted a few minutes and the shoes not terribly longer. But the whole outfit as an ensemble made us think of the mod squad.
A whole bunch of things have happened since Friday, so stay tuned...
Thursday, January 17, 2008
Jonesing for Tylenol
OK. So I knew that posting about our urp-free existence was going to fly back in my face (in that projectile kind of way that Hallie has mastered).
So, Saturday was lovely: Hallie woke up kissing and hugging us, had a great day, played happily, cooed, laughed, talked, and did not vomit.
Sunday, not so much. She tossed back everything we gave her for breakfast, lunch, and dinner. At least the kid is consistent. I'm not sure what that makes up for, but you do get high points for consistency in Early Evaluation, so I will give credit where credit is due.
Monday started out a bit better and she did manage to keep down her breakfast and lunch, but refunded dinner. She also refused napping at 11 and I ended up having to walk her to 'our cafe' at eleven, where she refused the bottle (actually, she tossed it out of the stroller at me with quite a bit of force). I raced out of the cafe and speed-walked her around the neighborhood until she finally fell asleep somewhere in Whole Foods and ended up taking a few ounces of bottle from me then. She kept it down, stayed asleep long enough for me to read one chapter of a book I am teaching but have yet to complete and scarf down a Sonoma Chicken Salad wrap. She did better at her 4pm nap, but then needed to get up at 6 for speech therapy. By dinner time she was none too happy of a camper---poorly rested, annoyed, aggravated, and complaining. And so she vomited.
After vomiting she did do something rather amazing (and frightening): we have a weird catch on our bathroom door that is a sort of lever-like thing that needs to be adjusted from time to time so that the door actually locks. The whole family was in the bathroom -- I was running Hallie's bath and fiddling with the lock and Sharon was using the facilities, and Hallie was marauding something or another. Or so we thought. Turns out that the kid was watching me from the corner of her eye. Not one minute after I leave the bathroom (locking the catch behind me so as to contain our toddling explorer) do I hear a shout from Sharon: "Come quickly, she just opened the door!" Great. And if you have ever been to our bathroom, you will know that the 'landing' which was constructed in the 1880s when they put the kitchen/bathroom addition on our house (which dates to at least the 1830s) does NOT meet code. There were no codes back then, so the landing is about a quarter of a foot deep. Not somewhere you want your toddler toddling and also not somewhere one can reasonably install a baby gate. Oy. Our days of peeing in peace are gone!
Anyway, Tuesday resembled Sunday to a tee.
And then we thought about things a bit more carefully and had one of those parenting Eureka! moments. The times when Hallie did NOT vomit were directly correlated to her having a dose of tylenol on board to take the edge off of her teething. The times when she did vomit, she was tylenol-free. While we're technically supposed to wait 4 hours between doses, she gets really cranky at three hours and so we've moved the next dose up a bit. We suspect that her dose is probably on the small side for her at this point since it's not been adjusted since she was about 21 lbs.
So now the plan is to keep the kid happily pumped up with her drug of choice (she used to vomit with baby ibuprofen, and we're not taking any chances!) and hopefully keep the edge off of those molars that are taking their sweet time coming in.
We implemented Project Tylenol yesterday and things were good. One urp, nothing else. I may have just jinxed us again, but I hope not!
Meanwhile, let's hope those chompers come in soon. And might I point out that the concept of teething is particularly cruel for those of us parents whose kids don't really use them to eat.
So, Saturday was lovely: Hallie woke up kissing and hugging us, had a great day, played happily, cooed, laughed, talked, and did not vomit.
Sunday, not so much. She tossed back everything we gave her for breakfast, lunch, and dinner. At least the kid is consistent. I'm not sure what that makes up for, but you do get high points for consistency in Early Evaluation, so I will give credit where credit is due.
Monday started out a bit better and she did manage to keep down her breakfast and lunch, but refunded dinner. She also refused napping at 11 and I ended up having to walk her to 'our cafe' at eleven, where she refused the bottle (actually, she tossed it out of the stroller at me with quite a bit of force). I raced out of the cafe and speed-walked her around the neighborhood until she finally fell asleep somewhere in Whole Foods and ended up taking a few ounces of bottle from me then. She kept it down, stayed asleep long enough for me to read one chapter of a book I am teaching but have yet to complete and scarf down a Sonoma Chicken Salad wrap. She did better at her 4pm nap, but then needed to get up at 6 for speech therapy. By dinner time she was none too happy of a camper---poorly rested, annoyed, aggravated, and complaining. And so she vomited.
After vomiting she did do something rather amazing (and frightening): we have a weird catch on our bathroom door that is a sort of lever-like thing that needs to be adjusted from time to time so that the door actually locks. The whole family was in the bathroom -- I was running Hallie's bath and fiddling with the lock and Sharon was using the facilities, and Hallie was marauding something or another. Or so we thought. Turns out that the kid was watching me from the corner of her eye. Not one minute after I leave the bathroom (locking the catch behind me so as to contain our toddling explorer) do I hear a shout from Sharon: "Come quickly, she just opened the door!" Great. And if you have ever been to our bathroom, you will know that the 'landing' which was constructed in the 1880s when they put the kitchen/bathroom addition on our house (which dates to at least the 1830s) does NOT meet code. There were no codes back then, so the landing is about a quarter of a foot deep. Not somewhere you want your toddler toddling and also not somewhere one can reasonably install a baby gate. Oy. Our days of peeing in peace are gone!
Anyway, Tuesday resembled Sunday to a tee.
And then we thought about things a bit more carefully and had one of those parenting Eureka! moments. The times when Hallie did NOT vomit were directly correlated to her having a dose of tylenol on board to take the edge off of her teething. The times when she did vomit, she was tylenol-free. While we're technically supposed to wait 4 hours between doses, she gets really cranky at three hours and so we've moved the next dose up a bit. We suspect that her dose is probably on the small side for her at this point since it's not been adjusted since she was about 21 lbs.
So now the plan is to keep the kid happily pumped up with her drug of choice (she used to vomit with baby ibuprofen, and we're not taking any chances!) and hopefully keep the edge off of those molars that are taking their sweet time coming in.
We implemented Project Tylenol yesterday and things were good. One urp, nothing else. I may have just jinxed us again, but I hope not!
Meanwhile, let's hope those chompers come in soon. And might I point out that the concept of teething is particularly cruel for those of us parents whose kids don't really use them to eat.
Sunday, January 13, 2008
Look Ma, No Urps!
OK...it's now safe to report this, so report this we will.
Today was not only a vomit free day, but an urp free day. There were no urps, no retches, no gags, no gurgles, no send-ups, no clothing changes, no emergency baths, no frantic calls for rolls of paper towels and/or wipes, no regrets, and no mommy tensions.
Hallie did have more than four ounces at breakfast, more than four ounces at lunch, more than five ounces at dinner, at least 22 ounces of her goat milk formula, 2 great big poops, and one nice bath (with no ingestion of bath water, which alone would have ruined the day). (She probably also ate a few bites of board book, but that's another story).
She played with her friends, had her first outing to Target as a shopping cart rider (with great cover from Grammy covering any nasty germs on it), and had a wonderful day. She seemed even happier than ever---and all this in spite of teething (breakthrough of lower right molar seems imminent to me).
Anyway, this may not be repeated for a long time, but suffice it to say: it was a good day.
Today was not only a vomit free day, but an urp free day. There were no urps, no retches, no gags, no gurgles, no send-ups, no clothing changes, no emergency baths, no frantic calls for rolls of paper towels and/or wipes, no regrets, and no mommy tensions.
Hallie did have more than four ounces at breakfast, more than four ounces at lunch, more than five ounces at dinner, at least 22 ounces of her goat milk formula, 2 great big poops, and one nice bath (with no ingestion of bath water, which alone would have ruined the day). (She probably also ate a few bites of board book, but that's another story).
She played with her friends, had her first outing to Target as a shopping cart rider (with great cover from Grammy covering any nasty germs on it), and had a wonderful day. She seemed even happier than ever---and all this in spite of teething (breakthrough of lower right molar seems imminent to me).
Anyway, this may not be repeated for a long time, but suffice it to say: it was a good day.
Friday, January 11, 2008
This Week in Hallie's World
I've been meaning to post about several different things this week, but then one thing led to another, and here we are: Friday.
Anyway, it's been a pretty busy and pretty fulfilling week. On Monday, Hallie's first friend from the old ICN days (Ellen, her primary nurse) came to dinner. Hallie was thrilled. She had a great time playing with Ellen and Karina (whom she calls "Kee"--it's very cute: if I tell her that Karina is coming over, Hallie races over to the door and bangs on it and says "Kee...Kee.").
And of course we had a great time seeing Ellen, too.
Then, bright and early on Tuesday morning, Hallie went to her first music class. Sharon and I decided that Hallie really needs to be around age-mates more often. While we are not throwing caution to the wind where germs are concerned, we are trying to walk a fine line where we balance Hallie's physical health and her emotional/social well-being. The Music Class seems to fit the bill pretty nicely: the size of each class is limited to 12 and they provide (and set a good example by using) alcohol and wipes to sanitize the instruments that the kids use. And they make it clear that sick kids need to stay away and make this possible for parents to reschedule an infinite number of classes missed for health reasons. So, at 10:30am on Tuesday, Hallie and I headed out to the community center where her class meets. (Of course, we were running a bit late because Hallie took the opportunity to poop right before we left the house--not that we are complaining about pooping or anything! It's been a banner poop week and we are very grateful for that).
Hallie's response to being in class was interesting: she was thrilled to see other kids, but a bit weirded out by seeing so many in one place (up until now, her exposure to other toddlers has been to one or two at a time and mostly -- nearly exclusively -- to her friends Karina and Ethan and her cousins Adam and Hannah, and Hannah hardly counts as a toddler at this stage). And then the music began. Hallie was intrigued but unsure what to do. A couple of times she burst into tears and needed to jump into my arms. Only when they took out the more percussive instruments did Hallie hit her stride. Anyway, none of this was made any easier by the fact that Hallie was super tired (the class coincides with her purported nap time). Still, she did not do too badly and I think that as the weeks wear on (the class runs for ten sessions), she'll get the hang of things and then we can enroll her in the spring session and she'll be an old pro. Being us, we have taken very seriously our need to do 'homework' by practicing our songs during the week and some of them make Hallie very happy here at home and hopefully this will be the case in 'school' too.
Then, later in the day on Tuesday, I took Hallie to one of the excellent toddler parks in our neighborhood. It was nearly seventy out and sunny and, global warming related guilt aside, it seemed criminal not to go to the park. This was only the second park experience that Hallie has had since beginning to walk in November, and I wanted to make it a good one.
Naturally, I was not the only one who had this thought and the park was filled with toddlers. For the second time that day, Hallie seemed a bit overwhelmed. She looked around at all of the kids and did not quite know what to make of things. Then I walked her over to the slide and helped her ascend the steps to the top. She slid down a few times and after a while (and especially after Auntie Ney met us there and helped enhance the experience), Hallie really seemed to have fun. She began to get into the other kids too; she smiled and waved at them and babbled incessantly. She was especially taken by the little girl in the swing next to hers and by two little boys that were just slightly younger than she is (adjusted). One, named Edison, particularly caught her eye. She noticed him the minute he and his mom got to the park and waved to him frantically. Then, after a long swinging session, I tried putting her into her stroller for a nap (she had been yawning all over the place). She would have none of this and insisted on playing some more. I relented and put her down next to the stroller. She raced over to Edison, grabbed his ball, slid it to him, ran over to get the ball and leaned over to Edison and planted a huge kiss on his face. It was very sweet. Watch out Edison!
Anyway, this experience underscored our sense that we need to let Hallie get out and play more. She strikes me as emotionally and socially closer to a one year old than an eighteen month old--and this is fine. But I want her to be able to have the same, or at least similar, experiences as other kids. She learns from them differently than she does from us and no amount of OT or mommy time or nanny time will make up for the fact that she is deprived of the company of her peers. Sharon and I are on the same page here. Neither of us is advocating that we place her into daycare full time or take inordinate risks, but both of us feel like we need some sort of structured play with peers for Hallie. So we'll start with music and then add in something else, and hopefully Hallie will remain healthy and will be able to fight off any of the germs with which she will inevitably come into contact.
Otherwise: it's been a great poop week, as I said earlier. I don't know if it's the miralax kicking in, the prune and peach cocktail, or the added flax seed oil, but we are not going to change a thing and hopefully this will continue. Hallie's reflux is in a bit of a flareup (she is teething like crazy) but most of the week this has amounted to a wet 'urp here or there -- urps aside we've had three vomit free days this year so far, which isn't too bad (especially compared to our experience in 2007). Hopefully this will continue, too.
And in terms of the eating, we've got a FEES (flexible endoscopic evaluation of swallowing) scheduled with ENT for a couple of weeks from now. We're not sure how this will go: Hallie is not one for letting ANYTHING near her face, let alone a small camera threaded down her nostril. The goal is to see what is going on structurally with the laryngomalacia and paralyzed vocal cord and whether these, or something else, is structurally impeding Hallie's swallow. Neither of us want to assume out of hand that Hallie's inability to deal with solid food (including most meltables) is merely behavioral and our sense is that it's not entirely reflux-related, either. Hopefully Hallie will cooperate and we'll have more information in a couple of weeks from now and will have a better sense of how to proceed with treating her eating/feeding issues.
Well, that's all for now! Whew...
Because everything looks better in black and white...
I misunderstood that Sharon meant for these to be in black and white. So, here's a couple de-colorized.
She took these without a flash using our Sony Cybershot---it's nothing fancy, but she's got great vision (of course she is an architect and consequently very particular!).
I'm still working on some other posts, but in the meantime, enjoy these (familiar, but very different) shots.
She took these without a flash using our Sony Cybershot---it's nothing fancy, but she's got great vision (of course she is an architect and consequently very particular!).
I'm still working on some other posts, but in the meantime, enjoy these (familiar, but very different) shots.
Thursday, January 10, 2008
Sleep Study
...just not the kind that us overly-medicalized parents might think of!
Sharon took these the other night. It's impossible not to think that your child is the most beautiful one in the world when you are watching him or her sleeping.
And for those of you used to seeing Hallie in non-stop motion, these should serve as evidence that she really does sleep.
Sharon took these the other night. It's impossible not to think that your child is the most beautiful one in the world when you are watching him or her sleeping.
And for those of you used to seeing Hallie in non-stop motion, these should serve as evidence that she really does sleep.
Saturday, January 5, 2008
Hallie's Goals
Hallie had her much delayed Early Childhood Intervention assessment yesterday. I was struck by several things involving this process: 1. how bureaucratic it is and how much paperwork is involved. I felt like I was signing mortgage papers all over again. 2. how artificial the categories seem. For example, there's nowhere on the DAY-C assessment sheets for scoring fine motor skills in any real way. Does she stack? No. Does she do puzzles accurately? No. Does she put things in things deliberately? Yes. So she passes. The three skills don't seem precisely analogous to me. 3. The answers depend very much on what you want them to be. So the Special Instructor, who has been a no-show more frequently than a show for the past six months (she was slated to come twice a month since June and has been here maybe four or five times since then) wanted Hallie to age out of Special Instruction, so she did. This is fine with us.
That said, Hallie placed pretty well in most categories: she is at 15-18 months for Social and Cognitive and Physical skills (the latter collapses fine motor and gross motor skills into one category; Hallie excels at the latter but not at the former). She is 27% delayed for Speech and Communication and places at the 11 month old level for that. Three weeks ago her delay would have been closer to 50% and she would have placed, at best, at 8 or 9 months. She has three to seven words that she uses in an emergent way and three signs that she uses consistently (more, book, and all done) and shakes her head 'no' but not 'yes' and, while it's clear that she knows what 'no' means when told it, she does not always use 'no' the head-shake to signify that. This delay is a good thing in some respects, because Jenny, Hallie's wonderful speech therapist, wants to keep working with her. So we'll now have speech twice a week (which is what it's been since August or so) and OT once a week. And we'll also start working on eating with Jenny, too (nowhere does this show up in the DAY-C assessment at all---she'd have placed at the 6 month to 8 month level had feeding constituted a category, I think).
Given the artificiality of it all, I am not sure how to assess the assessment tools' validity (SIDE RANT: This is, after all, the larger problem of all outcomes-based assessments, which is very much in vogue at all educational levels these days. How you phrase the question matters and often how you phrase the questions is predicated on what you want to see). But I am relieved that Hallie, right now, seems to be doing quite well, and even where she is lagging behind a bit, she is making progress.
Feeding is another issue altogether, and we are beginning to lose patience a bit. She is drinking out of her straw cup (a real one) nicely, and she's pretty good with Stage 2s and pureed fruit, but the attempts we've made at Stage 3s and crunchy meltables all pretty much end the same way. It ain't pretty. We'll be taking her to the ENT for a follow up on the question of how much structural stuff might be at the root of Hallie's dysphagia (vocal cord paralysis, laryngomalacia, and possibly tonsils that impede her swallow). And we'll be consulting with Hershey Medical Center (largely because they MIGHT take our insurance---who knows really? millions of phone calls need to be made on this) about feeding therapy. At the very least it'll give us another opinion.
Yesterday we did have the first vomit-free day of the year. The total for the second half of 2007 (mid May to end of December) was 16 vomit free days. We are hoping to break that goal this year, but suffice it to say that we tried a Stage 3 today, so today does nothing to advance this long-term objective. However, and this is important, the flax seed oil or the prune/peach/miralax cocktail does seem to be helping in the pooping department. As you can imagine, we need to febreze our entire living room/dining room area pronto!
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