Hallie began private speech therapy on Sunday. We consider ourselves very fortunate that our therapist was able to get approval to see her twice weekly for 12 weeks. Hopefully, she'll be able to extend this because it's really clear to us that this is not a problem that is going to go away in 12 weeks. Indeed, I suspect this will stretch on for years and, unfortunately, at this juncture point, it's unclear where or how this story is going to turn out.
In other words, the shoe that we always expected, appears to have dropped. Very quietly.
So, this is not a fun post to write. Normally I'm either an optimist or I am indignant and a fighter where Hallie is concerned. I'll do anything to get to the bottom of what's going on (figuring out the reflux puzzle, figuring out the allergy puzzle, not taking no for an answer or accepting easy fixes that specialists throw at you when I know my kid better than they do, etc etc). This talking puzzle, and to some extent, its corollary, the eating puzzle, have me stymied and dejected. I don't even know what to say anymore. How appropriate.
So therapy is very hard for Hallie. Talking is very hard for Hallie. That's what it boils down to. She is so clearly unable to make her mouth and lips work to make sounds, even when she knows those sounds and makes them in other contexts. For example, Hallie has begun to imitate the word "good" (sounds like "guh" or even just a glottal "g" stop sound) at home. If we say "good" (as in "good girl"), Hallie says "guh" almost every time. But when the therapist put her on a swing at the office and tried to get her to imitate "go" ('guh' would have been perfectly acceptable), Hallie simply and clearly could not do it. Over and over again. The second we said "good" she'd go "guh" and if we said "go" she'd look at us, and try to move her mouth, and nothing would come out. The good news about "go" is that we eventually managed to get "go" (guh again) out of her on the park swing last night after we both got home from work. And now we can probably go with it, so to speak, but this is so, so hard for Hal.
The word that had her so frustrated and broke our hearts was "ball." Balls are one of Hallie's favorite things but for some reason she cannot sign them and she cannot say "ball." She says "buh" for Big Bird, Bert, and Bubbles---they all sound the same and are just consonants, really, but we'll take that. But not for "ball." And the therapist would not give her a ball until she said and signed something and so over, and over again our little girl was upset, and frustrated, and at the end literally threw up her hands in the air and did not know what to do. We'll work on ball at home, too, and eventually she will get it. But this is so hard and our hearts are breaking.
I think it'll go like this for every word at this point, and they are not really words but mere approximations. And then we will need to fight to turn them from mere statements into modes of communication (nothing except Sesame Street functions that way yet). And then we will need to add vowels, and syllables and build language.
It's like teaching someone who had a massive stroke how to speak, I imagine. And not knowing if they ever will.
So we are just sad. We'll fight this, of course, no matter what it takes and we will get her to speak however best she can and communicate with us in whatever mode works, and love her, love her, love her throughout this process, but this morning, and last night, and the day before have been very hard.
On a positive note: we did have a four day vomit free streak (March 31-April 3) and yesterday was sans spew, too. So we are up to 30 days of no vomit this year, four of them being in April. May the streak go on!
How Old is Hallie?
How Old is Lea?
Showing posts with label apraxia. Show all posts
Showing posts with label apraxia. Show all posts
Wednesday, April 9, 2008
Wednesday, April 2, 2008
Hallie at the Drive In
Wow. It's really spring. What better time for a quick zip over to the Drive-In (Home) Theater and a few hundred episodes of Sesame Street? At least that's what Hallie thinks!
Anyway, today was gorgeous--around 70 degrees--and even if I had to work, and got home on the typical late side (around 7pm), Sharon got home early enough (kind of has to, in order to relieve Ami) to take Hallie to the park to hang out with the neighborhood kids. It had rained this morning and early afternoon, so the slide was wet and Hallie stuck to it (making it harder for her to use her blossoming pushing-off skills) but apparently she had a great time and tuckered herself out (despite her three hour nap this afternoon). It seemed like Hallie had a great day, and we'll know better in the future when Hallie can actually tell us something about it.
But we're not complaining. Hallie has been imitating like crazy this past two weeks, and especially over the past few days, and we're (ok--at least I am crediting this (in part) to adding one capsule of Nordic Naturals EPA to her two capsules of Nordic Naturals 3-6-9, and constant speech drilling. Hallie has been saying the following words, on command, this past week:
"kitty" (her favorite, never has lost this one), 'teddy', 'diaper' (sounds a bit like 'pah' sometimes), 'good' or 'good girl', 'cookie' (another favorite), 'buh' (big bird), 'seh-see seet' (sesame street), 'buht' (bert), 'eh-die' (ernie), 'day-dee' (baby), 'am-ma' (mama), 'igg-ee' (piggy), and of course, 'wah-dah' (water). There are probably others, but those are the ones that come immediately to mind. And the thing is: the repetition and imitation is fluid and on command. This has never been the case before, and we certainly hope that it lasts. (And none of this has replaced signing; in fact, tonight, Hallie signed an entire book -- Goodnight, Baby! -- to me as I read it. It was way cute. And very smart, since she has consistently chosen this book as the book she'd like me to read to her when she wants to go upstairs to take her bath and go to sleep and we moms are dilly--dallying).
In this photo, Hallie is saying 'buh'.
Doesn't she have a great pout? I am certain that she will use it against me!
Anyway, we are heartened by the speech gains and are hoping that the SLP with whom we are trying to work privately does manage to get us approved by our session on Sunday. If not, we'll call out the big guns (our fab pediatrician will write all sorts of letters and make every effort to use his diagnostic tool bag to get us services). But we are hoping that Independence Blue Cross doesn't make us get ornery (or cross) with them. It ain't pretty when the mamas get their feathers all ruffled.
In other related news: the eating is getting a bit better. Hallie has thrived on her diet of Veggie Stix (those meltable snack food items and NOT carrot and celery sticks in the raw) and has mastered the art of making it through about 20 of these at a dinner time seating, meaning that we get to sort of eat as a family these days. And even more impressively, she ate 5 whole Scooby Snacks graham cracker sticks tonight at dinner. This is a whole 60 calories, folks, and replaced an entire jar of baby food puree. And even her purees are getting a bit more sophisticated (she ate two jars of Stage 3 this week). So maybe we're seeing some oral progress across the board. Who knows, perhaps we will free up that big shelf filled with tiny jars some day? I'm not going to run away with my fantasy of having more space in our cupboard just yet, but I am pleased that Hallie does seem to be making a bit of progress in terms of texture and that this progress has gone on long enough for it to seem real as opposed to totally fleeting.
And, finally, sort of in terms of progress, I do have two more vomit free days to log in to our tally, one in the month of March and one in the month of April. Hallie did well on Saturday AND Sunday (making it another one of those two-in-a-row sort of victories), but Monday ended up being a wash out (huge post dinner vomit) for reasons utterly unknown. Today was a good one, however, and so we got to start off the month of April on the right foot (or mouth...). The kiddo is still not pooping up to our standards (or her GI tract's standards, at least) and so this continues to be of concern. We have her on Reglan, Miralax, Pear nectar, and taking a pretty large dose of flax seed oil. We are also giving her Calcium/Magnesium and the fish oils. All of that should promote easy pooping. Yet not in our girl (who will be embarrassed to read this some day. Sorry, baby!)
We're hoping that our eagerly-awaited upcoming visit to the Allergist (what the hell kind of parent can't wait until an Allergist pricks their kid's skin?) will shed some light on what's going on here. And it might provide some insight into the small patch of dry skin/eczema that Hallie has on her thighs and, more intermittently, on her eyelid. It's hard to know what's setting this off, but we'd like to get some insight into this so that we can nip this problem in the bud. There's a strong family history of allergies, asthma, and eczema (and all three seem to go hand in hand and are to some extent related to diet), so I am not sure we can place the blame here on microprematurity. But whatever is going on, we mamas really want to get at the root of things so that we can fine tune our very fine toddler.
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).
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