I am unabashedly plagiarizing this idea (and my comment) from one of my favorite autism bloggers, Lisa Quinones Fontanes over at AutismWonderland. In a recent post, she relates a story about how she discovered the extent to which her son, Norrin, who is just a bit older than Hallie, is a literal thinker. In short, this is a problem that many with autism (often of the higher functioning, Aspergerian nature) have with metaphor.
Anyway, I was contemplating posting this before Lisa beat me to the topic (hey, at least I can say that I am frantically working away these days on an article and can use this as an excuse for why I am not keeping up with blogging; once I meet my self-imposed August 1 deadline for submitting said article I shall start using my need to write a conference paper and/or prepare for the upcoming semester as an excuse!). But Lisa is, as I have already noted, an inspiration to us slacker/bloggers. And so I leave you with this story:
Blogging Hallie and Lea's Life
Wednesday, July 13, 2011
Friday, July 8, 2011
Martial Arts
Last week, we decided to enroll Hallie in a martial arts class that meets a few blocks from where we live. I had been passing by Zhang-sah, which is Korean for "brave scholar," for years. Over the past year or so I had been thinking that it would be a very good thing for Hallie to enroll in a martial arts class; as one of her (many) school-based OTs pointed out to us about a year ago, one of the things that we might consider doing for Hallie as she gets older is cutting back (even if just a bit) on some of the formal therapies that she receives and replacing these with social activities that serve a similar purpose. This would help us move from a medical- and intervention-based model to a community- based model, which is, down the road, one of our long-term goals. While we clearly need to continue to do some medicalized/therapeutic intervention to help Hallie attain independence (things like learning how to fasten button and snaps, hold pencils with the correct tripod grasp, and write more fluidly come to mind immediately, but I suppose eating comfortably also falls into that category), we really have gotten to the stage (I think) where some of this is now possible and extremely desirable.
In no small part this is the case because Hallie really has developed a few wonderful friendships at preschool. And, as it has turned out, her closest little girl friend, B., just happens to be taking a pre-martial arts class at the studio that is close to our house (and even closer to B's house). Since B. has now graduated from the YCCA and is about to go on to kindergarten, I've been particularly concerned with trying to find ways for Hallie and B. to maintain their excellent little friendship. Even if they don't see each other every day at school, attending a weekly martial arts class together seems like an excellent way of achieving this goal. And, in the meantime, Hallie will hopefully work on developing her core strength, discipline and focus, coordination, self-esteem and assertiveness, and a bunch of other good things like that.
So, given all of this, last week I popped in to Zhang-sah to sign her up and schedule her "z-mat" test. The sensei would assess her readiness for pre-martial arts and get to know her a bit and Hallie would get to familiarize herself with the dojo and the idea of doing martial arts.
Fortuitously, Hallie, Lea (who would love to take a martial arts class but needs to wait until she turns four...since they are not willing to accept her own self-designation of herself as a six year old) and I ran into B. and her mom on the street on the way to the z-mat. B. decided to accompany Hallie to lend her support during the evaluation.
Not so fortuitously, as it turns out in retrospect, Hallie was getting awfully sick and was a bit miserable. Her sensory issues were way out of whack and her neophobia was at an all time high. So she did not take well to the idea of doing something new and being evaluated for it. However, B.'s presence really helped her through the (perceived) ordeal. I daresay she even managed to have fun.
That remained true, alas, until she needed to try on her gi (the martial arts uniform) to make sure that it was the correct size. At that point, Hallie once more reverted to shut down mode. She literally curled up into a whimpering fetal ball and could not be coaxed into trying on the outfit by anyone or anything. I decided to take the extra small and run with it (even though she's at the 75th percentile in height, she is clearly thin enough to fit into an extra small, and even, as it turns out a 2T pair of shorts right now. The particular illness which she has managed to contract has enabled her to shed two pounds in under a week. The rest of us should only be so lucky!)
Sharon and I had no idea what to expect given Hallie's histrionics. But we decided to plow forward and signed a (month-to-month, just in case things did not pan out terribly well) contract with the martial arts studio. We were impressed by how much the instructor could tell about Hallie from a fifteen minute evaluation. We had divulged nothing on the paperwork other than the fact that she sometimes needs an inhaler before physical activities (this was most certainly the case this past week or so). But he had picked up pretty much everything: the low tone in her trunk and extremities; her right-side weakness (due to her left side grade I intraventricular hemorrhage), her tight heel cords (which are consistent with her undiagnosed but likely case of mild cerebral palsy (probably ataxic) and the like. But, even though she had trouble balancing on one leg and coordinating her movements, she did pass her z-mat. I told her the instructor about her issues (the extreme prematurity, the brain bleed, the low tone, the problems with auditory processing etc) ex post facto, and he seemed cool with it. My feeling is this: she may not be the most proficient martial artist out there, and that's fine. As long as this is good for her self-esteem, assertiveness, physical capacity, and social well-being, that's okay. Not everything is, or should be, a competition.
Yet, that said, we wanted to make sure that Hallie had fun doing this. And our first experience was none too auspicious. We weren't sure whether it was that Hallie was coming off of a recent bad experience with swimming lessons (long story short: the platform that turned a 6 foot pool into a 3 foot one came loose and Hallie went under and was terrified, and remains so to this day) or the illness, or just the sensory stuff that seems to accompany being on the spectrum but we were terrified that Hallie would be miserable when we returned to the dojo to take an actual class.
As it turns out, we should have been considerably less concerned. Hallie had a marvelous time. Maybe it was the series of lengthy conversations about this that Sharon had with Hallie. Or perhaps Hallie was feeling better. Or maybe it was the fact that everyone was wearing a gi. Whatever it was, we are grateful and quite impressed by Hallie's willingness to try new things and do so gracefully.
In no small part this is the case because Hallie really has developed a few wonderful friendships at preschool. And, as it has turned out, her closest little girl friend, B., just happens to be taking a pre-martial arts class at the studio that is close to our house (and even closer to B's house). Since B. has now graduated from the YCCA and is about to go on to kindergarten, I've been particularly concerned with trying to find ways for Hallie and B. to maintain their excellent little friendship. Even if they don't see each other every day at school, attending a weekly martial arts class together seems like an excellent way of achieving this goal. And, in the meantime, Hallie will hopefully work on developing her core strength, discipline and focus, coordination, self-esteem and assertiveness, and a bunch of other good things like that.
So, given all of this, last week I popped in to Zhang-sah to sign her up and schedule her "z-mat" test. The sensei would assess her readiness for pre-martial arts and get to know her a bit and Hallie would get to familiarize herself with the dojo and the idea of doing martial arts.
Fortuitously, Hallie, Lea (who would love to take a martial arts class but needs to wait until she turns four...since they are not willing to accept her own self-designation of herself as a six year old) and I ran into B. and her mom on the street on the way to the z-mat. B. decided to accompany Hallie to lend her support during the evaluation.
Not so fortuitously, as it turns out in retrospect, Hallie was getting awfully sick and was a bit miserable. Her sensory issues were way out of whack and her neophobia was at an all time high. So she did not take well to the idea of doing something new and being evaluated for it. However, B.'s presence really helped her through the (perceived) ordeal. I daresay she even managed to have fun.
That remained true, alas, until she needed to try on her gi (the martial arts uniform) to make sure that it was the correct size. At that point, Hallie once more reverted to shut down mode. She literally curled up into a whimpering fetal ball and could not be coaxed into trying on the outfit by anyone or anything. I decided to take the extra small and run with it (even though she's at the 75th percentile in height, she is clearly thin enough to fit into an extra small, and even, as it turns out a 2T pair of shorts right now. The particular illness which she has managed to contract has enabled her to shed two pounds in under a week. The rest of us should only be so lucky!)
Sharon and I had no idea what to expect given Hallie's histrionics. But we decided to plow forward and signed a (month-to-month, just in case things did not pan out terribly well) contract with the martial arts studio. We were impressed by how much the instructor could tell about Hallie from a fifteen minute evaluation. We had divulged nothing on the paperwork other than the fact that she sometimes needs an inhaler before physical activities (this was most certainly the case this past week or so). But he had picked up pretty much everything: the low tone in her trunk and extremities; her right-side weakness (due to her left side grade I intraventricular hemorrhage), her tight heel cords (which are consistent with her undiagnosed but likely case of mild cerebral palsy (probably ataxic) and the like. But, even though she had trouble balancing on one leg and coordinating her movements, she did pass her z-mat. I told her the instructor about her issues (the extreme prematurity, the brain bleed, the low tone, the problems with auditory processing etc) ex post facto, and he seemed cool with it. My feeling is this: she may not be the most proficient martial artist out there, and that's fine. As long as this is good for her self-esteem, assertiveness, physical capacity, and social well-being, that's okay. Not everything is, or should be, a competition.
Yet, that said, we wanted to make sure that Hallie had fun doing this. And our first experience was none too auspicious. We weren't sure whether it was that Hallie was coming off of a recent bad experience with swimming lessons (long story short: the platform that turned a 6 foot pool into a 3 foot one came loose and Hallie went under and was terrified, and remains so to this day) or the illness, or just the sensory stuff that seems to accompany being on the spectrum but we were terrified that Hallie would be miserable when we returned to the dojo to take an actual class.
As it turns out, we should have been considerably less concerned. Hallie had a marvelous time. Maybe it was the series of lengthy conversations about this that Sharon had with Hallie. Or perhaps Hallie was feeling better. Or maybe it was the fact that everyone was wearing a gi. Whatever it was, we are grateful and quite impressed by Hallie's willingness to try new things and do so gracefully.
Friday, June 24, 2011
Bear Cubs Wrestling
We are so grateful that our girls (mostly) adore one another. They are the age at this point where they play together regularly rather than parallel play. Sometimes they'll make up games (they do a considerable amount of pretend playing which often involves riffing off of a theme, be it a beloved fairy tale like "The Three Little Pigs" or "Goldilocks and the Three Bears" or "Little Red Riding Hood" or a favorite television show like Ni-Hao Kai Lan or Peppa Pig). They will assume various roles (and assign other roles to us and to Zen the cat, who participates -- sort of -- in a cheerfully bewildered feline manner) and act stuff out, using all of the millions of plastic manipulatives we own and the physical space of our home as props. They also really enjoy reading books together: Hallie will really be reading and Lea will pretend to be reading (she does so in a totally cute manner: she loudly declaims the entire story that she has made up -- which is more or less based upon the pictures she sees in the book she's grabbed, which is inevitably a favorite of her older sister's -- and expects Zen, to whom she does most of her reading, to listen attentively). We love it that books are probably our kids' favorite toys (which is saying something since we essentially live in an exceptionally poorly organized toy store).
But the games that our kids especially enjoys are really physical and sensory. They love to race and chase each other through our pop up gymboree tunnel (one of the best $35 purchases I ever made); roll around inside of it or inside of their Princess Castle Tent with a gazillion balls or stuffed animals; or wrestle with one another like bear cubs.
The other night I took a series of pictures of them doing just that. It's this series (or the series of shots I wish I had gotten) which is probably going to convince us of the absolute necessity of upgrading to a D-SLR camera (note to those few -- I think we're down to one -- people who still buy us holiday gifts: please contribute to our camera fund instead! Especially if you want pictures of your littlest grand daughters!) Anyway, I took lots of pictures and none of them came out great and my pathetic editing skills did not improve them at all but hopefully the joy that these two girls felt shines right through:
But the games that our kids especially enjoys are really physical and sensory. They love to race and chase each other through our pop up gymboree tunnel (one of the best $35 purchases I ever made); roll around inside of it or inside of their Princess Castle Tent with a gazillion balls or stuffed animals; or wrestle with one another like bear cubs.
The other night I took a series of pictures of them doing just that. It's this series (or the series of shots I wish I had gotten) which is probably going to convince us of the absolute necessity of upgrading to a D-SLR camera (note to those few -- I think we're down to one -- people who still buy us holiday gifts: please contribute to our camera fund instead! Especially if you want pictures of your littlest grand daughters!) Anyway, I took lots of pictures and none of them came out great and my pathetic editing skills did not improve them at all but hopefully the joy that these two girls felt shines right through:
Sunday, June 12, 2011
'Before' and 'After': The Fifth Edition
Hallie had a relatively low key fifth birthday: as she does most every Saturday, she spent the morning at hippotherapy in West Chester. Indeed, most of the afternoon was spent at a fun birthday party, just not her own (ironically perhaps, it was for twins born a day after Hallie who are enrolled in her preschool class). Hallie seemed to be okay with not having a big party on her big day and is eagerly awaiting her turn to host an assorted bunch of crazy (in the best possible way) five year olds which will come in a couple of weeks.
But even if we didn't have her party today, we both knew that we needed to celebrate Hallie in one particular way: we needed to bring Hallie over to the Pennsylvania Hospital Intensive Care Nursery to see some of her first friends.
At first, Hallie was appropriately shy (a word that she has begun to use quite recently, and with great effect). Even though Hallie read the signs on the walls and knew that she was in the 'nursery', she had no idea why we were schlepping her there. Those developmental visits to the ICN ended way long ago (too long ago. Note to NICU professionals reading our blog: consider following up kids through at least age five or the onset of elementary school. Hallie was discharged at age 2 corrected with little notation of her delays/disorders. We are savvy and well-educated and have sufficient insurance to have hunted down referrals to developmental pediatricians and gotten Hallie into oodles of therapy. The results of these interventions are very clear, as I shall show below. But not everyone has the resources we do and some people optimistically take 'discharged at 2 corrected' to mean 'caught up by 2 corrected' and are blindsided by the problems that arise down the road. End of speech, sound of getting down from soapbox).
But then Sharon had the brilliant idea of using Hallie's favorite literary form, of all things the 'knock-knock' joke, to help break the ice. Soon Hallie was regaling the nurses with the sort of inane, meaningless, and absolutely hilarious 'knock-knock' jokes that are the fare of typically developing five year olds everywhere (or at least among her peers at the YCCA).
Hallie's joke telling was incredible, but even more incredible were the peals of hysterical laughter that she emitted at her own jokes. I am hoping that the nurses would tell the parents in the ICN who were hovered around the isolettes of their extremely premature babies that the funny five year old to whom they were listening resided, sometimes in a rather precarious state, in the ICN's nurseries (she was a resident in three out of four of them) for 121 days, often hooked up to various life-saving machines and devices, and was never expected to turn out like this at all.
And on that note, I leave you with the 'before' and 'after' shots. Here's one of Hallie during the first week of her life:
And here's Hallie (and Lea) with one of Hallie's primaries, Corinne:
And, finally, here's one of Hallie with her very first friend, Ellen, who was the first ICN staff member whom we officially met, and who has, indeed, remained a close person in Hallie's life:
But even if we didn't have her party today, we both knew that we needed to celebrate Hallie in one particular way: we needed to bring Hallie over to the Pennsylvania Hospital Intensive Care Nursery to see some of her first friends.
At first, Hallie was appropriately shy (a word that she has begun to use quite recently, and with great effect). Even though Hallie read the signs on the walls and knew that she was in the 'nursery', she had no idea why we were schlepping her there. Those developmental visits to the ICN ended way long ago (too long ago. Note to NICU professionals reading our blog: consider following up kids through at least age five or the onset of elementary school. Hallie was discharged at age 2 corrected with little notation of her delays/disorders. We are savvy and well-educated and have sufficient insurance to have hunted down referrals to developmental pediatricians and gotten Hallie into oodles of therapy. The results of these interventions are very clear, as I shall show below. But not everyone has the resources we do and some people optimistically take 'discharged at 2 corrected' to mean 'caught up by 2 corrected' and are blindsided by the problems that arise down the road. End of speech, sound of getting down from soapbox).
But then Sharon had the brilliant idea of using Hallie's favorite literary form, of all things the 'knock-knock' joke, to help break the ice. Soon Hallie was regaling the nurses with the sort of inane, meaningless, and absolutely hilarious 'knock-knock' jokes that are the fare of typically developing five year olds everywhere (or at least among her peers at the YCCA).
Hallie's joke telling was incredible, but even more incredible were the peals of hysterical laughter that she emitted at her own jokes. I am hoping that the nurses would tell the parents in the ICN who were hovered around the isolettes of their extremely premature babies that the funny five year old to whom they were listening resided, sometimes in a rather precarious state, in the ICN's nurseries (she was a resident in three out of four of them) for 121 days, often hooked up to various life-saving machines and devices, and was never expected to turn out like this at all.
And on that note, I leave you with the 'before' and 'after' shots. Here's one of Hallie during the first week of her life:
And here's Hallie (and Lea) with one of Hallie's primaries, Corinne:
And, finally, here's one of Hallie with her very first friend, Ellen, who was the first ICN staff member whom we officially met, and who has, indeed, remained a close person in Hallie's life:
Labels:
birth story,
birthday,
developmental milestones,
Hallie,
ICN,
NICU
Saturday, June 11, 2011
Friends on Steps
Last night we ate dinner with our friends Uri, Shira, and Eran. Eran goes to school with Hallie and Lea and is approximately halfway between our two girls, age wise (he's about 3.5). Eran made a very strong first impression on the kids: from the moment he started school at the YCCA this fall, we've been hearing about him. Hence we felt very happy/lucky to have begun to make good friends with him and his family this past winter.
Anyway, we were over at their house last night for a very fine dinner composed mostly of their yummy and fresh CSA (farm share) produce.
The kids had a great time wrestling around like bear cubs (Hallie insisted that we bring her pink pop up princess castle and it was a real hit with Eran, as she predicted). They tore the place apart as only they can do (Uri and Shira insisted that most of the mess was Eran's and predated our visit but I've met our kids before and have seen their amazing handiwork, particularly in relatively new environments replete with unfamiliar toys that must.all.be.explored.at.ONCE!).
We also inaugurated Hallie's birthday season, which began at school with mini cups of Haagen-Dazs ice cream and party hats for the Rainbows (Hallie's group at school). All of the kids were still wearing them and talking about the ice cream when I got there at pick up time. Sadly, no one took pictures of this, but Hallie declaimed it, and the ice cream, to be the favorite part of her day yesterday.
Then, after a nice healthy dinner, we got out a small ice cream cake (half chocolate for Hallie and half vanilla for Eran, who despises chocolate) and sang and blew out candles again. Hallie was very pleased, to say the least. And she can now blow out five candles quite quickly, completely unassisted (this is a major change for her). Being the really dreadful parents that we are, we have no pictures of this, either.
I might put some candles in Hallie's toast this morning. Perhaps I can get pictures of that!
Anyway, we were over at their house last night for a very fine dinner composed mostly of their yummy and fresh CSA (farm share) produce.
The kids had a great time wrestling around like bear cubs (Hallie insisted that we bring her pink pop up princess castle and it was a real hit with Eran, as she predicted). They tore the place apart as only they can do (Uri and Shira insisted that most of the mess was Eran's and predated our visit but I've met our kids before and have seen their amazing handiwork, particularly in relatively new environments replete with unfamiliar toys that must.all.be.explored.at.ONCE!).
We also inaugurated Hallie's birthday season, which began at school with mini cups of Haagen-Dazs ice cream and party hats for the Rainbows (Hallie's group at school). All of the kids were still wearing them and talking about the ice cream when I got there at pick up time. Sadly, no one took pictures of this, but Hallie declaimed it, and the ice cream, to be the favorite part of her day yesterday.
Then, after a nice healthy dinner, we got out a small ice cream cake (half chocolate for Hallie and half vanilla for Eran, who despises chocolate) and sang and blew out candles again. Hallie was very pleased, to say the least. And she can now blow out five candles quite quickly, completely unassisted (this is a major change for her). Being the really dreadful parents that we are, we have no pictures of this, either.
I might put some candles in Hallie's toast this morning. Perhaps I can get pictures of that!
Memorial Day Weekend
We spent Memorial Day weekend hanging out with our friends Sheila, Brett, and Alex.
First, we took in the school carnival. Hallie and Alex were thrilled to go on some pretty grown up rides without adult companionship. Here they are getting ready to be swung wildly:
Brett did have to accompany them on their spin on the tornado:
And, likewise, Brett was there for the ride on the "Scrambler." This only makes sense since, as you will note, we cannot even see Hallie's face over the bar (though you might be able to make out the hair on the top of her head if you look real closely):
Lea, meanwhile, could only ride on one ride by herself:
Sharon and I took turns taking Lea on the two rides that she could go on while accompanied by an adult (a pretty innocuous dinosaur ride and one other the identity of which now escapes me) but she was far from satisfied by these experiences. She wanted to do it all, and particularly the fast, scary rides. Both kids love roller coasters, speed, and height. I am 100% certain that they do not get this from me (astute observers will note that it was Brett taking them on these rides, whilst I was manning the iPhone camera).
I did manage to sort of deflect Lea's ire at not being able to operate her own bumper car by taking her over to some of the game booths where we could win prizes. Strategically, we decided to play a game which everyone won. There's really nothing quite like shelling out six dollars for a dollar store ball to placate a two year old's tantrum.
Amazingly, I did win Hallie a prize on my first shot a wack-a-mole. This was not something that I could replicate so yes, of course, we ended up shelling out lots of money for another prize for Lea.
Suffice it to say that the kids had a great time (even with Lea's confinement to solid ground for much of the time) and we have just what we need out of the experience: more balls and more stuffed creatures to which we must tend.
Anyway, here's a cute shot of all the kids on Alex's front porch:
And here's one of Lea standing in the green grass. Doesn't her hair look really red? During the winter she seemed to be turning into a brunette, but now that she's out in the sun a lot, her red hair has returned.
Anyway, the girls really love spending time with their friend Alex and hope to do it again very soon!
First, we took in the school carnival. Hallie and Alex were thrilled to go on some pretty grown up rides without adult companionship. Here they are getting ready to be swung wildly:
Brett did have to accompany them on their spin on the tornado:
And, likewise, Brett was there for the ride on the "Scrambler." This only makes sense since, as you will note, we cannot even see Hallie's face over the bar (though you might be able to make out the hair on the top of her head if you look real closely):
Lea, meanwhile, could only ride on one ride by herself:
Sharon and I took turns taking Lea on the two rides that she could go on while accompanied by an adult (a pretty innocuous dinosaur ride and one other the identity of which now escapes me) but she was far from satisfied by these experiences. She wanted to do it all, and particularly the fast, scary rides. Both kids love roller coasters, speed, and height. I am 100% certain that they do not get this from me (astute observers will note that it was Brett taking them on these rides, whilst I was manning the iPhone camera).
I did manage to sort of deflect Lea's ire at not being able to operate her own bumper car by taking her over to some of the game booths where we could win prizes. Strategically, we decided to play a game which everyone won. There's really nothing quite like shelling out six dollars for a dollar store ball to placate a two year old's tantrum.
Amazingly, I did win Hallie a prize on my first shot a wack-a-mole. This was not something that I could replicate so yes, of course, we ended up shelling out lots of money for another prize for Lea.
Suffice it to say that the kids had a great time (even with Lea's confinement to solid ground for much of the time) and we have just what we need out of the experience: more balls and more stuffed creatures to which we must tend.
Anyway, here's a cute shot of all the kids on Alex's front porch:
And here's one of Lea standing in the green grass. Doesn't her hair look really red? During the winter she seemed to be turning into a brunette, but now that she's out in the sun a lot, her red hair has returned.
Anyway, the girls really love spending time with their friend Alex and hope to do it again very soon!
Friday, June 10, 2011
Two Gorgeous Girls
I really enjoy having one-on-one time with each of the kids. This is something that really is only possible when I am done teaching for the semester since our childcare tends to coincide with my teaching schedule; right now the kids go to preschool three days a week and our nanny takes care of them on the fourth day (which is also a therapy-heavy day for Hallie). But having Laura watch the kids on Tuesdays has enabled me to schedule appointments and such of various sorts for one or another kid on Tuesdays and not have to schlep both of them all over the place. So, while the idea of having alone time with each of the kids overlap with appointments might sound a tad bit pathetic (and certainly less obviously fun than alone time spent at a music class or playground or what have you), our kids are used to attending lots of appointments for all of the obvious reasons and hence are quite good at refashioning the mundane into something fun. You can see this very clearly from these pictures:
Here's Hallie on a pizza 'date' with mama after an evaluation at Penn:
And here's Lea hanging out waiting for her new hair-do:
Here's Hallie on a pizza 'date' with mama after an evaluation at Penn:
And here's Lea hanging out waiting for her new hair-do:
Thursday, June 2, 2011
Thursday, May 26, 2011
Vocal Cord Surgery: The Picture
This was the picture that Hallie's ENT gave us after the surgery yesterday. What you are looking at is a magnified image of her vocal folds (taken via the camera attached to the scope). You will note that there is a bubbly area that is white---that's some of the material that Dr. Z injected to 'bulk' Hallie's paralyzed fold (which is on the left--it's the one that looks a bit irritated).
In case you are interested in learning more about normal and abnormal laryngeal function and vocal folds, you can check out this website.
Hallie's voice today is still hoarse but definitely louder than it had been prior to surgery. It's nice to hear her more easily. I'll try to capture a video/audio of Hallie reading or something and will post that soon.
In case you are interested in learning more about normal and abnormal laryngeal function and vocal folds, you can check out this website.
Hallie's voice today is still hoarse but definitely louder than it had been prior to surgery. It's nice to hear her more easily. I'll try to capture a video/audio of Hallie reading or something and will post that soon.
Wednesday, May 25, 2011
Surgery Complete!
Hallie was a model patient and cooperated throughout even though she was pretty scared. The worst part was recovery and getting her IV taken out (can't say that I blame her, really). But Sharon was there with her as Hallie woke up and that helped a bit.
Hallie's voice sounds a lot louder but is still quite hoarse (think: loud frog with a touch of laryngitis) but it should even out in tone a bit as the irritation from the intubation and having the scope down her throat.
We got a very cool picture of the injection site and I'll post that later as soon as we can scan it.
Hallie's voice sounds a lot louder but is still quite hoarse (think: loud frog with a touch of laryngitis) but it should even out in tone a bit as the irritation from the intubation and having the scope down her throat.
We got a very cool picture of the injection site and I'll post that later as soon as we can scan it.
Vocal Cord Surgery Day
Hallie and Sharon were off to CHOP bright and early this morning so that Hallie could be prepped and sedated for her latest round of vocal cord bulking. At least this time they did not need to be there at 6:00am and instead had a comparatively late arrival time of 7:00.
Even though Hallie would like her big voice back (since whatever benefits of the temporary bulking have long been reversed and it's nearly impossible again to hear the kid), she was quite nervous and scared about the impending surgery. Over the past few days, we've been discussing it with her in preparation for this morning. She remembers the last round and we find it much better not to try to spring difficult things upon the kid; introducing things to her via social stories is far preferable. Hallie generally is a model patient and letting her know in advance what is expected of her usually works quite well.
Anyway, we do hope that the surgery proceeds as quickly and smoothly as it did last time. The worst part is the anesthesia (coming out of it more than the process of sedation). But the surgery itself is very quick (it took five minutes last time; however, it's quite high tech and involves robot-guided needles attached to cameras that inject the paralyzed vocal cord with an expensive bulking agent. Dr. K. will guide the robot by watching the action on a computer screen. It's all pretty amazing stuff and we are lucky to live so close to CHOP, which is one of the few places where this sort of surgery is done. I think the last surgery, which was just a test using saline, cost something like $15,000. This one is probably going to be even more expensive. Thank goodness we have insurance coverage and our insurance isn't giving us a hard time about paying for this surgery).
Anyway, to give you an idea of what Hallie's voice will sound like, I am uploading a couple of videos I took at her last ENT testing. This was about two and a half months after the last surgery was done and half of the benefits of that surgery had already worn off, but this should give you some sense of Hallie's vocal quality. We are hoping that what we are able to hear from her after today's surgery is better than this but bear in mind that the voice you will hear when you listen to these videos is MUCH stronger than her voice was pre-operatively:
I will update later on today to let everyone who reads this know how things went!
Even though Hallie would like her big voice back (since whatever benefits of the temporary bulking have long been reversed and it's nearly impossible again to hear the kid), she was quite nervous and scared about the impending surgery. Over the past few days, we've been discussing it with her in preparation for this morning. She remembers the last round and we find it much better not to try to spring difficult things upon the kid; introducing things to her via social stories is far preferable. Hallie generally is a model patient and letting her know in advance what is expected of her usually works quite well.
Anyway, we do hope that the surgery proceeds as quickly and smoothly as it did last time. The worst part is the anesthesia (coming out of it more than the process of sedation). But the surgery itself is very quick (it took five minutes last time; however, it's quite high tech and involves robot-guided needles attached to cameras that inject the paralyzed vocal cord with an expensive bulking agent. Dr. K. will guide the robot by watching the action on a computer screen. It's all pretty amazing stuff and we are lucky to live so close to CHOP, which is one of the few places where this sort of surgery is done. I think the last surgery, which was just a test using saline, cost something like $15,000. This one is probably going to be even more expensive. Thank goodness we have insurance coverage and our insurance isn't giving us a hard time about paying for this surgery).
Anyway, to give you an idea of what Hallie's voice will sound like, I am uploading a couple of videos I took at her last ENT testing. This was about two and a half months after the last surgery was done and half of the benefits of that surgery had already worn off, but this should give you some sense of Hallie's vocal quality. We are hoping that what we are able to hear from her after today's surgery is better than this but bear in mind that the voice you will hear when you listen to these videos is MUCH stronger than her voice was pre-operatively:
I will update later on today to let everyone who reads this know how things went!
Saturday, May 21, 2011
Kids on Couches
The kids spend a lot of time on our couch. They jump on the couch; they fall asleep on the couch (this used to be a prime napping zone and it's still where Lea falls asleep every night); they stand on the couch looking out the window; they climb onto, tumble over, and hang out behind the couch (where their millions of stuffed plush creatures reside). While I will not miss the couch (and its mate, the chair) once we so trash them that we really do put them outside to be picked up and/or turned into firewood, I imagine that the kids (and the cat who has ripped up the couch and chair) will lament their absence.
Anyway, here are a few random pictures of the kids on the couch that I took (and never posted) this winter.
Our heat was out in this one. We have a pesky boiler that we installed new when we bought the house but that has a piece that blows out constantly. The piece, called a thermal coupler, costs about $3.00. The heating repair folks charge $300.00 to replace it. Sharon has learned how to do it herself and has saved us about $2990.00 over the past ten years. But sometimes it takes a day or two to track down the right part when we run out of the stash we maintain, so the kids were huddled up in blankets on the couch while Sharon hunted down the correct piece. They looked awfully cute when doing so.
In this picture, Lea is pretending to be a dragon. She makes an awfully cute dragon, but I am not sure why the blanket's makers decided that dragons are orange.
And here Lea has fallen over, fast asleep after a session of jumping on the couch.
Anyway, here are a few random pictures of the kids on the couch that I took (and never posted) this winter.
Our heat was out in this one. We have a pesky boiler that we installed new when we bought the house but that has a piece that blows out constantly. The piece, called a thermal coupler, costs about $3.00. The heating repair folks charge $300.00 to replace it. Sharon has learned how to do it herself and has saved us about $2990.00 over the past ten years. But sometimes it takes a day or two to track down the right part when we run out of the stash we maintain, so the kids were huddled up in blankets on the couch while Sharon hunted down the correct piece. They looked awfully cute when doing so.
In this picture, Lea is pretending to be a dragon. She makes an awfully cute dragon, but I am not sure why the blanket's makers decided that dragons are orange.
And here Lea has fallen over, fast asleep after a session of jumping on the couch.
Discharged!
This week, Hallie was discharged for the very first time by one of the specialists whom she sees at CHOP.
When we got home from the NICU 4.5 years ago, we immediately set up appointments with pulmonology, gastroenterology, otolaryngology, and ophthalmology. Over the years, we've added orthopedics and developmental pediatrics. And we've always considered ourselves lucky because we have never needed to see a cardiologist, neurologist, nephrologist, and a bunch of other folks whom I am sure are very knowledgeable, personable, and at the top of their fields but whom I prefer not to get to know up close and personal.
Anyway, we see most of the aforementioned specialists twice a year, which is about an average schedule for a former micropreemie, though there were times that we had to go in to GI or Pulmonology three or four times a year when Hallie was going through particularly rough spots.
This past year, we ended up needing to see Ophthalmology an extra time because one of Hallie's OTs (there's been a lot of turnover at both the private practice and school-based agencies that see her) thought that Hallie wasn't tracking properly. We had also begun to note a pronounced squint and facial tic developing and were pretty concerned. Hallie had developed advanced Retinopathy of Prematurity (ROP) (she was at Stage 3, Zone 3, with Plus Disease, which means that the blood vessels behind her retina were severely abnormal and she was getting close to the point where her retina could have detached). Things were so bad that the mobile CHOP Ophthalmological team had scheduled her for bedside laser surgery. They checked her out the night before surgery (they'd come into the NICU with their crazy headgear, dilate the babies' eyes, and check them out. This all would have been super cool were my kid's eyesight not at stake). And lo and behold, the ROP began to resolve. They continued to check on her every few days, and then every week, for the next eight or ten weeks (we had weekly appointments at CHOP to see the eye specialists after discharge). But things were looking good.
Still, Hallie's eye doctor warned us that it was extremely likely that Hallie would require glasses by the time she reached school age. Pretty much all kids who have the laser surgery do, but most kids who develop such severe ROP require them as well. We could live with this (I am extraordinarily near-sighted and while I would prefer to see well, or even better, and while this has affected my peripheral and night vision even more than my daytime vision, between glasses and contact lenses and possible corrective surgery, there are fairly easy measures that one can take to rectify poor eyesight).
Anyway, we were all geared up for this to be the year that Hallie would need glasses. Instead, Dr. D. cheerfully discharged Hallie: as it turns out, Hallie sees 20/30 in her left eye and 20/40 in her right. She is at no more risk than anyone else for needing glasses and while we are welcome to come back any time (which we will if we think she does need glasses; why go to Pearle Vision when you have the fabulous CHOP docs right in your 'hood?), we need not make a follow up appointment for Hallie ever again. At all.
That does not mean, however, that we will not be seeing the lovely Dr. D. in six months. As it turns out, she would like to follow up with us for Lea. At Lea's two year well-baby check up (the same one that turned into a check-up for a raging double ear infection), our ped. noted that light was reflecting off of her cornea unevenly. This could be a sign of strabismus, where eyes do not look at an object at the same time. So he wanted us to check this out, and as it turns out, Dr. D. is an expert in both ROP and strabismus. She does not feel that Lea has it (instead, she thinks she's got a condition appropriately called pseudostrabismus). But, since strabismus is a fairly serious condition that can lead to permanent vision loss and requires treatment, she wants to see Lea in six months to be sure that her diagnosis is correct. So we'll be back at CHOP Ophthalmology in the fall.
Meanwhile, just a note about how good the kids were at the eye doctor: We got into the exam room and Hallie immediately sat down in the examination chair (she's sort of an expert patient, which makes things really easy for us, but is a bit sad when you think about why this is the case). When the assistant (maybe a fellow?) came in to do a basic examination before Dr. D. saw Hallie and Lea, Hallie said to her: "Hi Dr. D.!" The assistant told her that her name was Samantha, so Hallie said, "Hi Samantha! Do you want to see my books? This one (pointing to a Dora book) is my favorite, and this one over here (pointing to Danny and the Dinosaur) was mommy's favorite when she was little!" This is a major indicator of how far Hallie's social skills have come this year. A year ago (two months ago, even), she'd never have been so personable, and would certainly not have initiated conversation in this manner.
Hallie happily read the eye chart for Samantha. Then she greeted Dr. D. warmly and chatted with her.
When it was time for Lea to read the eye chart, Hallie asked if Lea could sit on her lap. We put Lea on Hallie's lap and had her attempt to decode the shapes on the screen. Since Hallie was reading the eye chart with letters at 18 months, Dr. D. wanted to try Lea with the letter chart, but that was a no go. Everything except for the letter "O" was a "K" and this was not helpful. So we resorted to a shape chart, but even this was hard for Lea, who predictably identified circles correctly but mixed up squares and triangles. So we gave Hallie a card with the various shapes on them to hold and asked Lea to point to the correct analogy to what she saw on the screen.
In the old days, Hallie would have just shouted out the answers (she is a bit of a know it all who in the past has demonstrated limited self-restraint). But Hallie listened to our directions to allow Lea to do the work, controlled herself admirably, and held up the chart so that Lea could point to things on her own. I was so proud of her.
Anyway, even with the tiny meltdown that the eyedrops induced (telling kids that they are "magic drops" does not, in fact, make them any more acceptable or less uncomfortable), the kids were fabulous and the appointment could not have gone smoother.
Next up: vocal cord surgery for Hallie on Wednesday. We are sort of excited about this because her voice has gotten pretty weak again and I know that she wants her big voice back. So wish us luck. We are pretty old hat at the anesthesia-and-surgery-thing but still it kind of stinks that we have to keep doing this.
When we got home from the NICU 4.5 years ago, we immediately set up appointments with pulmonology, gastroenterology, otolaryngology, and ophthalmology. Over the years, we've added orthopedics and developmental pediatrics. And we've always considered ourselves lucky because we have never needed to see a cardiologist, neurologist, nephrologist, and a bunch of other folks whom I am sure are very knowledgeable, personable, and at the top of their fields but whom I prefer not to get to know up close and personal.
Anyway, we see most of the aforementioned specialists twice a year, which is about an average schedule for a former micropreemie, though there were times that we had to go in to GI or Pulmonology three or four times a year when Hallie was going through particularly rough spots.
This past year, we ended up needing to see Ophthalmology an extra time because one of Hallie's OTs (there's been a lot of turnover at both the private practice and school-based agencies that see her) thought that Hallie wasn't tracking properly. We had also begun to note a pronounced squint and facial tic developing and were pretty concerned. Hallie had developed advanced Retinopathy of Prematurity (ROP) (she was at Stage 3, Zone 3, with Plus Disease, which means that the blood vessels behind her retina were severely abnormal and she was getting close to the point where her retina could have detached). Things were so bad that the mobile CHOP Ophthalmological team had scheduled her for bedside laser surgery. They checked her out the night before surgery (they'd come into the NICU with their crazy headgear, dilate the babies' eyes, and check them out. This all would have been super cool were my kid's eyesight not at stake). And lo and behold, the ROP began to resolve. They continued to check on her every few days, and then every week, for the next eight or ten weeks (we had weekly appointments at CHOP to see the eye specialists after discharge). But things were looking good.
Still, Hallie's eye doctor warned us that it was extremely likely that Hallie would require glasses by the time she reached school age. Pretty much all kids who have the laser surgery do, but most kids who develop such severe ROP require them as well. We could live with this (I am extraordinarily near-sighted and while I would prefer to see well, or even better, and while this has affected my peripheral and night vision even more than my daytime vision, between glasses and contact lenses and possible corrective surgery, there are fairly easy measures that one can take to rectify poor eyesight).
Anyway, we were all geared up for this to be the year that Hallie would need glasses. Instead, Dr. D. cheerfully discharged Hallie: as it turns out, Hallie sees 20/30 in her left eye and 20/40 in her right. She is at no more risk than anyone else for needing glasses and while we are welcome to come back any time (which we will if we think she does need glasses; why go to Pearle Vision when you have the fabulous CHOP docs right in your 'hood?), we need not make a follow up appointment for Hallie ever again. At all.
That does not mean, however, that we will not be seeing the lovely Dr. D. in six months. As it turns out, she would like to follow up with us for Lea. At Lea's two year well-baby check up (the same one that turned into a check-up for a raging double ear infection), our ped. noted that light was reflecting off of her cornea unevenly. This could be a sign of strabismus, where eyes do not look at an object at the same time. So he wanted us to check this out, and as it turns out, Dr. D. is an expert in both ROP and strabismus. She does not feel that Lea has it (instead, she thinks she's got a condition appropriately called pseudostrabismus). But, since strabismus is a fairly serious condition that can lead to permanent vision loss and requires treatment, she wants to see Lea in six months to be sure that her diagnosis is correct. So we'll be back at CHOP Ophthalmology in the fall.
Meanwhile, just a note about how good the kids were at the eye doctor: We got into the exam room and Hallie immediately sat down in the examination chair (she's sort of an expert patient, which makes things really easy for us, but is a bit sad when you think about why this is the case). When the assistant (maybe a fellow?) came in to do a basic examination before Dr. D. saw Hallie and Lea, Hallie said to her: "Hi Dr. D.!" The assistant told her that her name was Samantha, so Hallie said, "Hi Samantha! Do you want to see my books? This one (pointing to a Dora book) is my favorite, and this one over here (pointing to Danny and the Dinosaur) was mommy's favorite when she was little!" This is a major indicator of how far Hallie's social skills have come this year. A year ago (two months ago, even), she'd never have been so personable, and would certainly not have initiated conversation in this manner.
Hallie happily read the eye chart for Samantha. Then she greeted Dr. D. warmly and chatted with her.
When it was time for Lea to read the eye chart, Hallie asked if Lea could sit on her lap. We put Lea on Hallie's lap and had her attempt to decode the shapes on the screen. Since Hallie was reading the eye chart with letters at 18 months, Dr. D. wanted to try Lea with the letter chart, but that was a no go. Everything except for the letter "O" was a "K" and this was not helpful. So we resorted to a shape chart, but even this was hard for Lea, who predictably identified circles correctly but mixed up squares and triangles. So we gave Hallie a card with the various shapes on them to hold and asked Lea to point to the correct analogy to what she saw on the screen.
In the old days, Hallie would have just shouted out the answers (she is a bit of a know it all who in the past has demonstrated limited self-restraint). But Hallie listened to our directions to allow Lea to do the work, controlled herself admirably, and held up the chart so that Lea could point to things on her own. I was so proud of her.
Anyway, even with the tiny meltdown that the eyedrops induced (telling kids that they are "magic drops" does not, in fact, make them any more acceptable or less uncomfortable), the kids were fabulous and the appointment could not have gone smoother.
Next up: vocal cord surgery for Hallie on Wednesday. We are sort of excited about this because her voice has gotten pretty weak again and I know that she wants her big voice back. So wish us luck. We are pretty old hat at the anesthesia-and-surgery-thing but still it kind of stinks that we have to keep doing this.
Friday, May 20, 2011
The One Where We Forgot to Blog about the Second Child's Second Birthday
The good news is that Lea is a few weeks away from being 2.5 years old. The bad news is that her moms, in their constant state of being harried parents who are finding it increasingly challenging to juggle parenting, two full time jobs, the great search for an appropriate kindergarten, and general household duties like folding laundry, taking out trash, and changing yet another failing garbage disposal, have somehow neglected to blog about their second kid's second birthday. It's a pathetic truism that there are fewer pictures of the second child than the first, but this seems less motivated by intentional neglect than the exponential speeding up of time that ensues when one is chasing two kids in two different directions and still attempting to remain centered. Whatever that might mean.
So in the spirit of attempting to rectify this situation, I present you with a brief (and I mean brief) pictorial timeline of the week long celebration of Lea that occurred at the end of January.
Behold the Cookie Monster cupcakes:
These were very much a collaborative endeavor. Lea was really into a cookie monster phase (which we find interesting and a bit odd considering that the kid does not watch Sesame Street at all. Instead, she favors her sister's 'shows' -- this is what Hallie calls them. So Lea's viewing tastes run in the direction of Ni Hao, Kai Lan! and Dora the Explorer, which Hallie is only beginning to sort of outgrow). Anyway, Lea loved/loves Cookie and we decided to make her these cupcakes.
A few observations about cupcake making:
1. Do yourself a favor. If you are going to make 36 or 63 or 122 cupcakes to bring in to preschool, buy a mix. Duncan Hines has some great ones. This runs counter to everything in which I firmly believe (apparently, my mom's lessons about baking from scratch sunk in completely despite the fact that she rarely let me actually help in the kitchen and tried to pass off doing the dishes--which she abhorred--as a glamorous component of baking). But cupcakes are a major pain in the butt; kids like things sweet, and no one eats them anyway. So just buy a few boxes.
2. Don't be afraid of taking this task on. After all, someone else can do the actual decorating. Preferably someone else like Sharon, who is, after all, an architect who is meticulous and detail oriented. So, really, all you have to do is buy the materials. A couple of trips to Wegmans, finding a nice recipe for frosting on the internet, and a couple of emergency trips in medias re to the grocery store to procure yet some more confectioners' sugar and you are set.
3. Be tolerant of sweets. The whole house smelled like powdered sugar for a several days running. Cooking dinners that involved the consumption of lots of garlic helped restore the olfactory pH of the place by the end of the week.
4. Buy an awesome cupcake carrier. Buy this one. Ours is an oh-so-fashionable lemongrass and really works. But don't plan on balancing it on top of your double stroller. This is impossible to do once it is filled with 36 cupcakes and is still not advised when empty.
5. Plan on showing up at school for the event, even if you need to be at work. Attempts to get teachers to both take and send you pictures often prove futile.
Anyway, this explains why we have no pictures of Lea blowing out her candles at school, but we are assured everyone had a great time. No one seems to have suffered in a long lasting way from sugar shock, either.
Of course, we were not satisfied by the notion of just having a school party (especially since neither of us were able to attend). It's kind of hard to figure out what to do to celebrate a two year old's second birthday when said birthday takes place at midwinter. Fortunately, we are blessed with kids who love to see shows and who are excellent audience members. We are also extraordinarily lucky to be living in the middle of a city that has a lot of cultural offerings for kids, many of which are quite reasonably priced. So after some major research, we decided to take Lea and a few of her/our friends to see a matinee of Harry the Dirty Dog: The Play, which was being produced at the oldest theater in the United States, the Walnut Street Theater.
Given that we needed a whole bunch of tickets and got a comparatively late start on things, we ended up with nose-bleed seats. No one's nose actually bled (though there was some running here and there) and we all had a good time despite this.
The kids got all dolled up for the production:
After the theater, we came back to our place for some snacks, followed by cake.
The theme of the day was dog (though we did not serve hot dogs. At that point Lea did not eat hot dogs, so that would have been a poor choice).
Instead, we went with Snoopy and a Peanuts theme:
This time we outsourced the decorating to Wegman's. We drew a mock up of the cake and purchased all sorts of plastic/PVC figures to place on the cake ourselves (since apparently Snoopy/Peanuts designs have fallen out of favor and have been supplanted by the likes of Dora, Diego, Elmo, Disney Princesses, etc. We are finding that the same is true of Puff the Magic Dragon, who is the guest of honor of Hallie's upcoming 5th birthday celebration).
Anyway, Lea thought her cake was grand (and so did everyone else. Wegman's does mighty tasty cakes for a mere $26.00 for a half sheet. We highly recommend them).
Here's a picture of Gina, Jake's mom, with Lea:
The girls loved the Mickey Mouse ears that they got from Aunt Laura, Uncle Bryan, and the kids (not a birthday present, but a souvenir from the cousins' Christmas/New Years trip to Disneyworld). And everyone really enjoyed (and still enjoys) the awesome keyboard that Jake and Gina gave Lea for her birthday:
As the day wound down, Hallie was able to have some quality time with her sister (which she devoted to giving Lea some raspberries--still a favorite activity of our belly-button obsessed two year old).
And, since we have the benefit of some hindsight here, suffice it to say that being two has proven to be a grand thing for Lea: she is much more self-sufficient (don't even try to help her get dressed in the morning!), capable (she can count to twenty, sings the lyrics of numerous official songs and makes up many of her song lyrics and melodies), and dramatic (despite her incredibly advanced language skills, she knows how to use the well placed whine and shriek in her favor, sadly enough). She is also a great younger sister and has a wonderful relationship with Hallie and a great pet mom who is always looking out for her cat Zen (and making impassioned pleas for why we need to get a dog sooner rather than later).
We are thrilled to have Lea in our lives and happy to celebrate everything about her and with her, even when we do neglect to blog about it for a good four months! So happy belated second, not so little one!
Sunday, May 8, 2011
Mothers' Day 2011
Pink flowers (2 kinds, no less)? Check
Pink paper? Check.
Pink princess? Check.
Mommy returning home from three-days away on West Coast? Check.
Happy Mothers' Day, 2011! Check, Check!
Pink paper? Check.
Pink princess? Check.
Mommy returning home from three-days away on West Coast? Check.
Happy Mothers' Day, 2011! Check, Check!
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I guess the kid has a point; we really weren't outside! And I just love it that she stood her ground and explained her perspective to me. Every day, she's getting better at this, at answering questions appropriately, and at asking questions of us.