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Wednesday, January 30, 2008

Hallie in her Own Time (and in her Own Way)

This'll be fast because I'm supposed to be sleeping (yes, you guys hear that a lot). (EDIT: Blogger has been a nightmare with pictures, so this is anything but fast...indeed it took twelve hours to post this...I did sleep part of the time, though!)

So, after provoking huge amounts of anxiety in me about the 'no talking' thing, Hallie decided tonight to mix things up a bit. Again.

Tonight, she started practicing her 'b's again and repeatedly said "buh-buh" every time I pointed at Big Bird. She also said something that sounds a lot like "whassthat?" nearly all evening. And she tried to say "chair" (going over to her high chair). It came out like "chuh" but we'll take it. "It's Telly" (again, to Telly, on the television, naturally) came out very clear.

Is this proto-talking a phase? The not-talking a phase? Is she just not interested in telling us stuff one day, and interested the next? Much as we used to want to get into our wonderful old dog, Bailey's, head and find out what she was thinking about (we used to say to one another: 'boy I wish she could just talk to us for one day; I have so many questions to ask her'), we now feel the same way about Hallie (though want to communicate with her even more).

So, who knows? Like everything else, she seems to be doing things her way. Do they conform to typical development? Deviate from it? Who can say. All I know is that she'd be giving me a bunch of gray hairs if I didn't already have them!

And, because I've been a neglectful photo poster, I'm adding in the pics from this past weekend's concert.

This one is of a very cute Hannah and Adam.

In this one, Hallie is making her french-fry eating debut. Doesn't this look a lot like a normal lunch? We're not quite there yet, but we'll make it (although we did have a bit setback today when it was accidentally confirmed to us that Hallie is indeed cow-dairy intolerant. That seems to be at the root of a lot of upchucks in our past).

And in these two, Hallie is engaged in a very engrossing game of 'oh-no-peek-a-boo' with Adam and Hannah. She doesn't quite get that you cover your eyes in peek-a-boo (though she does use things like blankets to cover her head). Instead, she clasps her cheeks. Anyway, she thought this was hilarious and cracked up the entire time.

LATER: Since Blogger is being annoying, I guess I'll write more while I wait for the pics to finally post.

Anyway, Hallie had a super time at the concert and we were thrilled about the fries. And the mamas had a pretty great weekend, all totaled. Friday night's birthday dinner was FABULOUS (it was at a great new-ish restaurant called James that we'd been meaning to try but haven't had the opportunity to since we rarely go out anymore. The best part is that James, along with numerous other fine dining establishments, is located three blocks from our house. So, even though it was frigid out, we were able to walk. I love living in Philly for that reason.

Saturday's concert obviously rocked, and we got to spend time with our niece Megan who is getting help from Sharon on a school project.

And on Monday, Ellen (Hallie's first friend and nurse from the ICN) came over to babysit/spend time with Hal while we went out for Restaurant Week (to a very excellent place we'd been before, called Meritage. They have a great wine list, though we obviously did not choose from its very choicest offerings).

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....


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 she remembered us from the swallow study in August and not only remembered us, but the precise stuff Hallie was dealing with. In a word, she was awesome). Anyway, Staci, the therapist, is not an expert in Apraxia (and neither is Jenny, our also excellent ST through Early Intervention). But the symptoms Hallie is presenting with -- especially given how amazingly social and interactive Hallie is -- are worrisome to her. So we will fill out some paperwork and get ourselves an official evaluation and perhaps also visit neurology (there is a nagging sense we both have about Hallie's unilateral left IVH level 1, but even moreso, about the 'speck' of blood in the frontal lobe that no one could ever explain. I'm not sure how knowing about the IVH or other bleed would change things, but still we are curious. And once we get this evaluation, if it turns out that she is diagnosed with Apraxia, we can begin to get speech therapy that is tailored to that disorder---it is, from what I understand, very specific and very different than the sort of play therapy Hallie now gets. We hope that Jenny can learn some tricks for things to do with Hallie because we LOVE Jenny and Jenny loves Hallie. But we can also see if my insurance (evil thing that it is) or Sharon's (once it kicks in on March 1st...a month later than we thought) can cover additional private therapy. We'd do anything for this kid (and any kid, really) and want her to be as happy as she can be. Meanwhile, we are thrilled that she adores her Signing Time videos and are eager to learn this language with her. But someday, someday, we'd both love to hear 'mama' or some variation on that come out of our little girl's mouth...

To this end, and on the aforementioned topic of supplements, we've begun to add in some Omega 3-6-9s from Nordic Naturals that are supposed to be amazingly helpful for the speech for other kids with issues speaking. We know that a lot of the omega fatty acids are things that babies get from their moms via the placenta in the 3rd trimester and, since Hallie never had one of these, it's something that she missed out on. They cannot hurt, and if nothing else, they add in a few calories.

On the calorie front: we're not changing anything and are going to keep on keeping on. Hallie weighed in today at 24 lbs. 6 ounces, which is an 11 ounce gain since last month. This did not sound like a lot to me since she was 23 lbs 11 ounces last month and 24 lbs 2 weeks ago (on a different scale) but when the nurse charted Hallie for me, it turns out that she moved from the 41st percentile to the 42nd percentile for her ACTUAL age of 19 plus months. That's tremendous and we're not complaining. So, while we won't back off on the Karo syrup or the flaxseed oil or the added goat milk powder, we are still on track and if we have a bad day, it's a bad day and not the end of the world.

On that note, I gotta go get ready: Sharon, Aunt Renee and Aunt Kim and I are going to go out and celebrate my birthday tonight. Ami is going to babysit Hallie and we're going to have a great time! It's the first time that the birthday club has gotten together for a whole night out since June (we used to celebrate each of our big days this way).

Sunday, January 20, 2008

The Good, The Bad, and the Yummy

This has been an odd end of the week and weekend, to say the least.

All week long, Hallie has been refusing to speak; even old chestnuts like "diaper," "big bird" and "teddy" had disappeared. This had Jenny, Hallie's speech therapist, pretty frustrated and upset. On Thursday, after she left, Ami, Hallie's nanny, was equally upset and vowed to redouble her effort to get Hallie to use whatever small vocabulary she has. I guess it was pretty hard to watch Hallie spend an hour avoiding saying the word "book."

So imagine my surprise when I received an email on Friday afternoon that Hallie's speech therapy had discontinued because she was insufficiently delayed. Within a split second, I had Jenny on the phone. She had been equally dismayed by the message when she got it that morning from Hallie's caseworker.

Can you say, oh no?

Hallie sure can.

But, as Jenny informed the Early Intervention caseworker, they'd be hearing from us as quickly as you could mouth the words 'speech therapy' (presuming, of course, that you are not Hallie).

Needless to say, I had shot off an email, left a message for on the never-answered office phone of said case worker, and tracked her down (via cell) in the field. I had also called her supervisor asking to file an appeal.

Jenny concurs with our assessment: Hallie does not use her words consistently enough to qualify them as real speech at this point, and, while her reception is pretty amazing, her spoken language needs lots of work. Not to mention the feeding issues. Which of course Jenny did mention when she spoke to the case worker, who retorted that OT could handle them. Except for the fact that our OT has not been trained to handle them, whereas our Speech Therapist has. Anyway, we're no shirking violets around here and we'll do what we need to do to get Jenny reinstated. But it's a major pain in the butt to have to deal with this.

Happily, there have been some positive developments in terms of communication and oral motor skills on Hallie's part this weekend and they have, for now, overshadowed our upcoming bureaucratic battle.

First, we received our first two Signing Times DVDs from Amazon and Hallie LOVES them. Not only does she enjoy watching them, but she has learned an entirely new (and pretty extensive, for her) repertoire of signs from them. She has been signing 'eat' all week (before the dvds came) but now signs 'milk' and means it, too. And she has randomly signed 'car', 'play,' and we think she tried to do 'fish' earlier on today. We have great hopes for progress in communicating. Like just now, we were giving her juice, and she signed milk. We replaced the juice with milk and avoided a mini Hallie tantrum (or at least whine).

Second, we finally made some REAL progress on solids. Friday evening, Hallie kept signing 'eat' and asking for Gerber Puffs. So I kept giving them to her. She must have had at least 25 of them, and none came back up. This was unprecedented. Plus, she was chewing really well and seemed to move the food around in her mouth much more effectively than ever before.

So, Saturday morning, spurred on by a lot of positive reinforcement from my preemie blog moms group members, we decided to try some solids with Hallie. Sharon was the intrepid one; I just stood back and let the magic happen. And it did: Hallie had 6 graham cracker sticks and a few fruit flavored cheerios for breakfast. It was clearly a lot of work for her to get these down, but she did it. She concentrated really hard on eating and sent very clear signs when she was all done. And after all this work, she seemed happy and relieved to swallow down her fruity purees. Lunch was a repeat performance, though she was a bit more tired and only had 2.5 graham crackers and a few bites of mushy pasta. She did drink a bit less than average, but this was okay.

And so, for a reward, we took Hallie to her first professional sporting event, the Philadelphia Kixx indoor soccer game. Actually, I lie: we would have gone regardless since Sharon's firm sponsors the team. Since we had a couple of extra tickets (turns out that kids don't need 'em and our niece Megan wasn't able to come down to visit after all this weekend), we brought Karina and Mark and Vanessa along. Everyone had a great time and the kids were really well behaved.

So, it ended up that yesterday was our second day this year that was both vomit and urp-free and our fifth day without vomit if you do not count the urps.

Today has been a bit harder--Hallie was tired and had a backlog of poop (more on this later). But she did manage to get in and keep down some cheerios and had a ball with the graham crackers and her latest food, rice chex. Even if they did not stay in, she was having fun and this counts for a lot. We're trying to be more laid back about things in general and are hoping that this sends her a signal.

Hallie's also been talking more, and finally learned how to blow. This seems like a small feat but we were a bit concerned that she seemed unable to do this. As Jenny has pointed out, Hallie is pretty low-tone around her mouth and we need to build up those muscles so that she can eat and talk more effectively. Of course, she's turned it into yet another tactic to avoid bites of food she doesn't want. What can I say, my kid is a master when it comes to avoidance tactics!

Anyway, back to the being laid back theme: it's a good thing we are since we had a few blowouts from both sides earlier this evening. First, Hallie splashed a bit of water on herself during her first (yes, there were more) bath and spewed forth some of her lunch (we have no idea how much). It's possible that she aspirated a tiny amount or it's possible that she was working on a 'gift' for her mommies.

I got her out of the tub and quickly dried her off and got her into some clean clothing. Then I began to smell some poop. This seemed odd since I had just cleaned her up from a pancake-poop (as we refer to it affectionately) immediately prior to her bath. But the smell was pretty strong. And got stronger. And then I felt the wet spot on my jeans. Fortunately, Sharon got home just around the time when I thought I'd need to deal with this alone. It turns out that Hallie pooped through her onesie, through her pants, onto me, got it onto Sharon, and ended up smearing numerous other objects and places before we were done. I guess she's cleared out now!

Which reminds me, I gotta go do my sixth load of laundry since Thursday. Oy!

Funky Hallie

Just a couple of pictures to tide us over while I compose a more substantive post about Hallie-related developments.

Hallie LOVES her chair and often dresses to match it. She has a pretty unconventional way of getting in, though. She used to climb over the back; now she goes in over the arm instead. Nothing is easy and straightforward with this kid! She also likes to stack toys on the chair, then get in and retrieve them (the keys she stole from mommy were the 'toy' of choice on this particular occasion. Sometimes she ends up knocking the toy off of the chair when she gets into it, and then has to get out and start the whole process all over again. Very funny little kid, our girl!

This second shot is from last night. The hat lasted a few minutes and the shoes not terribly longer. But the whole outfit as an ensemble made us think of the mod squad.

A whole bunch of things have happened since Friday, so stay tuned...

Thursday, January 17, 2008

Jonesing for Tylenol

OK. So I knew that posting about our urp-free existence was going to fly back in my face (in that projectile kind of way that Hallie has mastered).

So, Saturday was lovely: Hallie woke up kissing and hugging us, had a great day, played happily, cooed, laughed, talked, and did not vomit.

Sunday, not so much. She tossed back everything we gave her for breakfast, lunch, and dinner. At least the kid is consistent. I'm not sure what that makes up for, but you do get high points for consistency in Early Evaluation, so I will give credit where credit is due.

Monday started out a bit better and she did manage to keep down her breakfast and lunch, but refunded dinner. She also refused napping at 11 and I ended up having to walk her to 'our cafe' at eleven, where she refused the bottle (actually, she tossed it out of the stroller at me with quite a bit of force). I raced out of the cafe and speed-walked her around the neighborhood until she finally fell asleep somewhere in Whole Foods and ended up taking a few ounces of bottle from me then. She kept it down, stayed asleep long enough for me to read one chapter of a book I am teaching but have yet to complete and scarf down a Sonoma Chicken Salad wrap. She did better at her 4pm nap, but then needed to get up at 6 for speech therapy. By dinner time she was none too happy of a camper---poorly rested, annoyed, aggravated, and complaining. And so she vomited.

After vomiting she did do something rather amazing (and frightening): we have a weird catch on our bathroom door that is a sort of lever-like thing that needs to be adjusted from time to time so that the door actually locks. The whole family was in the bathroom -- I was running Hallie's bath and fiddling with the lock and Sharon was using the facilities, and Hallie was marauding something or another. Or so we thought. Turns out that the kid was watching me from the corner of her eye. Not one minute after I leave the bathroom (locking the catch behind me so as to contain our toddling explorer) do I hear a shout from Sharon: "Come quickly, she just opened the door!" Great. And if you have ever been to our bathroom, you will know that the 'landing' which was constructed in the 1880s when they put the kitchen/bathroom addition on our house (which dates to at least the 1830s) does NOT meet code. There were no codes back then, so the landing is about a quarter of a foot deep. Not somewhere you want your toddler toddling and also not somewhere one can reasonably install a baby gate. Oy. Our days of peeing in peace are gone!

Anyway, Tuesday resembled Sunday to a tee.

And then we thought about things a bit more carefully and had one of those parenting Eureka! moments. The times when Hallie did NOT vomit were directly correlated to her having a dose of tylenol on board to take the edge off of her teething. The times when she did vomit, she was tylenol-free. While we're technically supposed to wait 4 hours between doses, she gets really cranky at three hours and so we've moved the next dose up a bit. We suspect that her dose is probably on the small side for her at this point since it's not been adjusted since she was about 21 lbs.

So now the plan is to keep the kid happily pumped up with her drug of choice (she used to vomit with baby ibuprofen, and we're not taking any chances!) and hopefully keep the edge off of those molars that are taking their sweet time coming in.

We implemented Project Tylenol yesterday and things were good. One urp, nothing else. I may have just jinxed us again, but I hope not!

Meanwhile, let's hope those chompers come in soon. And might I point out that the concept of teething is particularly cruel for those of us parents whose kids don't really use them to eat.

Sunday, January 13, 2008

Look Ma, No Urps!'s now safe to report this, so report this we will.

Today was not only a vomit free day, but an urp free day. There were no urps, no retches, no gags, no gurgles, no send-ups, no clothing changes, no emergency baths, no frantic calls for rolls of paper towels and/or wipes, no regrets, and no mommy tensions.

Hallie did have more than four ounces at breakfast, more than four ounces at lunch, more than five ounces at dinner, at least 22 ounces of her goat milk formula, 2 great big poops, and one nice bath (with no ingestion of bath water, which alone would have ruined the day). (She probably also ate a few bites of board book, but that's another story).

She played with her friends, had her first outing to Target as a shopping cart rider (with great cover from Grammy covering any nasty germs on it), and had a wonderful day. She seemed even happier than ever---and all this in spite of teething (breakthrough of lower right molar seems imminent to me).

Anyway, this may not be repeated for a long time, but suffice it to say: it was a good day.

Friday, January 11, 2008

This Week in Hallie's World

I've been meaning to post about several different things this week, but then one thing led to another, and here we are: Friday.

Anyway, it's been a pretty busy and pretty fulfilling week. On Monday, Hallie's first friend from the old ICN days (Ellen, her primary nurse) came to dinner. Hallie was thrilled. She had a great time playing with Ellen and Karina (whom she calls "Kee"--it's very cute: if I tell her that Karina is coming over, Hallie races over to the door and bangs on it and says "Kee...Kee.").
And of course we had a great time seeing Ellen, too.

Then, bright and early on Tuesday morning, Hallie went to her first music class. Sharon and I decided that Hallie really needs to be around age-mates more often. While we are not throwing caution to the wind where germs are concerned, we are trying to walk a fine line where we balance Hallie's physical health and her emotional/social well-being. The Music Class seems to fit the bill pretty nicely: the size of each class is limited to 12 and they provide (and set a good example by using) alcohol and wipes to sanitize the instruments that the kids use. And they make it clear that sick kids need to stay away and make this possible for parents to reschedule an infinite number of classes missed for health reasons. So, at 10:30am on Tuesday, Hallie and I headed out to the community center where her class meets. (Of course, we were running a bit late because Hallie took the opportunity to poop right before we left the house--not that we are complaining about pooping or anything! It's been a banner poop week and we are very grateful for that).

Hallie's response to being in class was interesting: she was thrilled to see other kids, but a bit weirded out by seeing so many in one place (up until now, her exposure to other toddlers has been to one or two at a time and mostly -- nearly exclusively -- to her friends Karina and Ethan and her cousins Adam and Hannah, and Hannah hardly counts as a toddler at this stage). And then the music began. Hallie was intrigued but unsure what to do. A couple of times she burst into tears and needed to jump into my arms. Only when they took out the more percussive instruments did Hallie hit her stride. Anyway, none of this was made any easier by the fact that Hallie was super tired (the class coincides with her purported nap time). Still, she did not do too badly and I think that as the weeks wear on (the class runs for ten sessions), she'll get the hang of things and then we can enroll her in the spring session and she'll be an old pro. Being us, we have taken very seriously our need to do 'homework' by practicing our songs during the week and some of them make Hallie very happy here at home and hopefully this will be the case in 'school' too.

Then, later in the day on Tuesday, I took Hallie to one of the excellent toddler parks in our neighborhood. It was nearly seventy out and sunny and, global warming related guilt aside, it seemed criminal not to go to the park. This was only the second park experience that Hallie has had since beginning to walk in November, and I wanted to make it a good one.

Naturally, I was not the only one who had this thought and the park was filled with toddlers. For the second time that day, Hallie seemed a bit overwhelmed. She looked around at all of the kids and did not quite know what to make of things. Then I walked her over to the slide and helped her ascend the steps to the top. She slid down a few times and after a while (and especially after Auntie Ney met us there and helped enhance the experience), Hallie really seemed to have fun. She began to get into the other kids too; she smiled and waved at them and babbled incessantly. She was especially taken by the little girl in the swing next to hers and by two little boys that were just slightly younger than she is (adjusted). One, named Edison, particularly caught her eye. She noticed him the minute he and his mom got to the park and waved to him frantically. Then, after a long swinging session, I tried putting her into her stroller for a nap (she had been yawning all over the place). She would have none of this and insisted on playing some more. I relented and put her down next to the stroller. She raced over to Edison, grabbed his ball, slid it to him, ran over to get the ball and leaned over to Edison and planted a huge kiss on his face. It was very sweet. Watch out Edison!

Anyway, this experience underscored our sense that we need to let Hallie get out and play more. She strikes me as emotionally and socially closer to a one year old than an eighteen month old--and this is fine. But I want her to be able to have the same, or at least similar, experiences as other kids. She learns from them differently than she does from us and no amount of OT or mommy time or nanny time will make up for the fact that she is deprived of the company of her peers. Sharon and I are on the same page here. Neither of us is advocating that we place her into daycare full time or take inordinate risks, but both of us feel like we need some sort of structured play with peers for Hallie. So we'll start with music and then add in something else, and hopefully Hallie will remain healthy and will be able to fight off any of the germs with which she will inevitably come into contact.

Otherwise: it's been a great poop week, as I said earlier. I don't know if it's the miralax kicking in, the prune and peach cocktail, or the added flax seed oil, but we are not going to change a thing and hopefully this will continue. Hallie's reflux is in a bit of a flareup (she is teething like crazy) but most of the week this has amounted to a wet 'urp here or there -- urps aside we've had three vomit free days this year so far, which isn't too bad (especially compared to our experience in 2007). Hopefully this will continue, too.

And in terms of the eating, we've got a FEES (flexible endoscopic evaluation of swallowing) scheduled with ENT for a couple of weeks from now. We're not sure how this will go: Hallie is not one for letting ANYTHING near her face, let alone a small camera threaded down her nostril. The goal is to see what is going on structurally with the laryngomalacia and paralyzed vocal cord and whether these, or something else, is structurally impeding Hallie's swallow. Neither of us want to assume out of hand that Hallie's inability to deal with solid food (including most meltables) is merely behavioral and our sense is that it's not entirely reflux-related, either. Hopefully Hallie will cooperate and we'll have more information in a couple of weeks from now and will have a better sense of how to proceed with treating her eating/feeding issues.

Well, that's all for now! Whew...

Because everything looks better in black and white...

I misunderstood that Sharon meant for these to be in black and white. So, here's a couple de-colorized.

She took these without a flash using our Sony Cybershot---it's nothing fancy, but she's got great vision (of course she is an architect and consequently very particular!).

I'm still working on some other posts, but in the meantime, enjoy these (familiar, but very different) shots.

Thursday, January 10, 2008

Sleep Study

...just not the kind that us overly-medicalized parents might think of!

Sharon took these the other night. It's impossible not to think that your child is the most beautiful one in the world when you are watching him or her sleeping.

And for those of you used to seeing Hallie in non-stop motion, these should serve as evidence that she really does sleep.

Saturday, January 5, 2008

Hallie's Goals

Hallie had her much delayed Early Childhood Intervention assessment yesterday. I was struck by several things involving this process: 1. how bureaucratic it is and how much paperwork is involved. I felt like I was signing mortgage papers all over again. 2. how artificial the categories seem. For example, there's nowhere on the DAY-C assessment sheets for scoring fine motor skills in any real way. Does she stack? No. Does she do puzzles accurately? No. Does she put things in things deliberately? Yes. So she passes. The three skills don't seem precisely analogous to me. 3. The answers depend very much on what you want them to be. So the Special Instructor, who has been a no-show more frequently than a show for the past six months (she was slated to come twice a month since June and has been here maybe four or five times since then) wanted Hallie to age out of Special Instruction, so she did. This is fine with us.

That said, Hallie placed pretty well in most categories: she is at 15-18 months for Social and Cognitive and Physical skills (the latter collapses fine motor and gross motor skills into one category; Hallie excels at the latter but not at the former). She is 27% delayed for Speech and Communication and places at the 11 month old level for that. Three weeks ago her delay would have been closer to 50% and she would have placed, at best, at 8 or 9 months. She has three to seven words that she uses in an emergent way and three signs that she uses consistently (more, book, and all done) and shakes her head 'no' but not 'yes' and, while it's clear that she knows what 'no' means when told it, she does not always use 'no' the head-shake to signify that. This delay is a good thing in some respects, because Jenny, Hallie's wonderful speech therapist, wants to keep working with her. So we'll now have speech twice a week (which is what it's been since August or so) and OT once a week. And we'll also start working on eating with Jenny, too (nowhere does this show up in the DAY-C assessment at all---she'd have placed at the 6 month to 8 month level had feeding constituted a category, I think).

Given the artificiality of it all, I am not sure how to assess the assessment tools' validity (SIDE RANT: This is, after all, the larger problem of all outcomes-based assessments, which is very much in vogue at all educational levels these days. How you phrase the question matters and often how you phrase the questions is predicated on what you want to see). But I am relieved that Hallie, right now, seems to be doing quite well, and even where she is lagging behind a bit, she is making progress.

Feeding is another issue altogether, and we are beginning to lose patience a bit. She is drinking out of her straw cup (a real one) nicely, and she's pretty good with Stage 2s and pureed fruit, but the attempts we've made at Stage 3s and crunchy meltables all pretty much end the same way. It ain't pretty. We'll be taking her to the ENT for a follow up on the question of how much structural stuff might be at the root of Hallie's dysphagia (vocal cord paralysis, laryngomalacia, and possibly tonsils that impede her swallow). And we'll be consulting with Hershey Medical Center (largely because they MIGHT take our insurance---who knows really? millions of phone calls need to be made on this) about feeding therapy. At the very least it'll give us another opinion.

Yesterday we did have the first vomit-free day of the year. The total for the second half of 2007 (mid May to end of December) was 16 vomit free days. We are hoping to break that goal this year, but suffice it to say that we tried a Stage 3 today, so today does nothing to advance this long-term objective. However, and this is important, the flax seed oil or the prune/peach/miralax cocktail does seem to be helping in the pooping department. As you can imagine, we need to febreze our entire living room/dining room area pronto!

This Year in Hallie's World: 2007 Retrospective

I've been a bad mommy blogger. I've been meaning to work on this year-in-Hallie retrospective all week, but between childcare (Ami was off for a couple of weeks and Sharon is working) and trying to get some of my own work done (very overdue book review is first item on list), I've not really had time to sort through things.

Anyway, rather than let this project go, I've decided to try, even if the results are less than perfect, to review Hallie's past year. Oddly, this coincides with Hallie's much-delayed (three months late) Early Childhood Intervention annual review, but I'll talk about that in a separate post.


Princess Hallie hit ten pounds this month, which seemed enormous to us, and she was beginning to outgrow the cute little holiday dress that we had bought her on the last weekend she was in the NICU. We were still in the midst of some horrible feeding issues and met with, and then decided never to return to, CHOP's Feeding and Swallowing program.


February brought a visit from the cousins, Aunt Laura, and Grandma Sandy, who were all very impressed with how big Hallie was getting (now weighing around 11.5-12 lbs), Hallie's "I'm home longer than I was in the NICU" party and a visit from three out of her four primary nurses; and a nasty case of the croup that coincided with both Valentine's Day and an ice storm. CHOP's ER was empty and the steroids she got were amazingly fast acting and so Hallie recovered VERY quickly from her first illness. Even more significantly, Hallie got rid of oxygen full time at the end of the month.


March witnessed the onset of swinging weather, and Hallie started going to one of the many playgrounds pretty regularly. This was also the month when she perfected her hat- and sunglass-removing skills, so we stopped being able to keep those on her! Hallie put in a brief cameo appearance at Karina's first birthday party and ended the month with a huge milestone: adoption day.


Hallie sat unassisted for the first time on Easter Sunday and was a champ at getting into the sitting position on her own not long after. She closed out the month in summer dresses and new sandals. You'll notice that she's already trying to take off her shoes. She worked on the hat next.

April also ended with the participation of Team Hallie & Olivia in the March of Dimes annual Walk America (now the March for Babies). We raised nearly 4000 dollars this past year and hope to raise even more in 2008.


May was a harder than average month for Hallie. We ran out of mommy's milk and had a hard time figuring out what she could eat. Her tummy issues and reflux picked up big time and she ended up with a nasty cold in the middle of the month that had her at CHOP's ER a couple of times, briefly hospitalized once, and at the ped's office so many times that we were awarded the Munchausen Moms' Award (just kidding). This began our long search that has led us to the discovery of some of Hallie's underlying conditions. Even though this process has been really difficult and even though it led to the cutting short of our much needed and now indefinitely postponed vacation, all in all this has been important knowledge to have.

Good things that happened this month included: Hallie learning how to clap her hands and crawl (obviously this month was brought to us by the Letter C); hanging out with micropreemie pals Maya (25 weeker) and Sydney and Payton (23 weeker twins) at their first birthday parties; and playing with the cousins until she got sick. Hallie began crawling and pulling to stand this month and cruising was imminent.

Bittersweet events this month included our first annual Mothers' Day visit with Hallie to Pastorius Park, which is the site of Olivia's grove.


We celebrated Hallie and Olivia's birthday in June and had a blowout bash for Hallie at Smith Playground on the Sunday following her birthday. Lots and lots of friends attended and we released balloons in honor of Olivia. We brought Hallie to Pastorius Park again on the 28th of June to commemorate the day we lost Olivia. Fittingly, the evening ended in a sudden and theatrical rain storm.

The rest of the month was devoted to continue figuring out what was going on with Hallie's GI tract and breathing. She was doing great from a lower respiratory standpoint but never quite shook that cold that did her in during the middle of the month of May. She ended up nursing that "cold" for at least fourteen weeks. Turns out that that "cold" was a symptom of her massive reflux and her probable aspiration of thin liquids (of which Pediasure, the food she was on, was one of the chief culprits).


On July 4th, we had an impromptu and very fun meetup with Holland and Eden at Sesame Place and got to meet some of Hallie's (now, more than then) favorite characters. That night, Hallie learned to climb up the stairs for the first time at Aunties' Renee and Kim's house---this is forever and indelibly etched upon the brain of Aunt Laura, who has to play the video we took for Hallie's cousin Adam multiple times a day STILL.

Hallie also spent some time with her favorite real life pals: our neighbors Karina and Ethan; cousins Hannah, Adam, Sarah, and Megan who live down at the Shore; and her friends Maya and Benjamin from the good ole (?) days in the ICN. During her playtime with friends and at home, Hallie perfected her cruising skills, which began to emerge back in June. We continued to have a ton of visits to the doctor and lots of attempts at antibiotics that did not really help Hallie much. In desperation, we began bringing Hallie to St. Joseph's in Paterson for Feeding and Swallowing issues and scheduled Hallie for a series of scopes to be performed inpatient in early August.


The early part of the month was taken up with medical diagnoses: laryngomalacia, left vocal cord paralysis, failed swallow study and aspiration. Fun stuff. At least we knew that the Simply Thick was a good idea (too bad the doctors never thought of it!) and that we were not totally nuts. We briefly got rid of the 14 week illness at the end of the month, but a week later, it was back again.


Hallie spent Labor Day weekend at the Shore, but got sick again, and we were back on the roller coaster ride. Hallie got to be a ring bearer at Aunt Neystice and Aunt Kim's Civil Union and enjoyed this role very much. Sharon lost her job and got to spend more time with Hallie, and I stepped up my research on how to handle Hallie's various issues. We now added a new diagnosis, Delayed Gastric Emptying, to the mix and began our ongoing quest to make Hallie poop.


We celebrated Hallie's adjusted birthday on October 3rd, her homecoming on October 10th, and Hallowe'en throughout the whole second half of the month. Hallie got ear tubes on the 29th and these proved a godsend---she's now cleared two colds without any repercussions. Otherwise, her health concerns and lack of eating advancement continued to mark our lives, and things seemed to be getting worse on the reflux front. We invested in large quantities of pediasure with fiber and nutren, jr. with fiber (that now resides in our basement), huge amounts of various herbal/organic/natural remedies, and nothing helped.


This month will go down in the history as the Month of the Goat (milk). It will also go down in history as the month that Hallie learned how to walk. We ended the month by being thankful for nanny goats and mobility. Thanks, Aunt Laura, for such a lovely Thanksgiving celebration!

Hallie entered the holiday season on two feet, three pounds heavier than she had been at the end of September, and in generally good spirits. This month, Hallie outgrew her first real shoes and started using language more consistently. We had a great time celebrating Chanukah and Christmas with friends and loved ones.

So Happy Holidays everyone! And may this be a wonderful new year, filled with joy and great things for all of you!