How Old is Hallie?

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Saturday, March 29, 2008

(Not such a) Big Gulp

I know that I'm posting twice in one day and that this is actually a fairly unusual thing. But as time goes along, I like to try to segregate out the medical from the non-medical posts. It's nice to have a post or two that are not related to diagnoses, therapies, doctors' visits, and the like (though it's harder to segregate out the vomiting).

Anyway, yesterday started out with a bang...or at least a shot or two. Hallie had what will probably end up being her last RSV shot (synagis), for which she was belatedly approved (at least the doctors who do the insurance approval were smart enough to approve it, even if late: doing a risk analysis on a 23 weeker for the cost of the synagis (around 3000 dollars a shot at this point) versus the cost of hospitalization (much more, obviously, especially if you add in the likely oxygen and even possibly CPAP and/or ventilation) is a no brainer. So we plucked Hallie rudely from her bed (our futon in the 'futon room', which is distinct from our glorious yet underutilized bed in our bedroom) and raced off to get her pumped up with synagis. She was not impressed. To say the least.

She did, however, put on more weight so we were impressed. She 's now a robust 25 lbs. 9 ounces, and still at 50% on the actual charts. She is also taller than 33 inches (informal measuring at home) and this accounts for her extended reach and also places her at at least 50% in height, actual.

Then it was off to do the long-awaited (long dreaded) swallow study at CHOP. We had to be there at 10:15 and for once were on time. This was our first mistake. Radiology had an emergency and was running 45 minutes late. So they did not take her until at least 11:15 (perhaps later; I just know that Sesame Street was over, which was also not a good thing. Everything was copasetic until the closing bars of Elmo's World and went steadily downstream from there). By the time we got into the room and did the baseline x-ray (which Hallie hated since it reminded her of the ng tube upper GI of seven months ago...or at least made her feel claustrophobic), Hallie was near hysterical. She was starving (her last bottle was at 11 the night before), grumpy (11 am is naptime especially when she is up early), and now they wanted her to be strapped into a chair, sandwiched between x-ray plates and to eat barium-laced food. No way, Jose. So suffice it to say the solids we tried were thrown clear across the room (that girl can throw) and just about every time we tried to get her to eat or drink she melted down in a way that is not typical of Hallie. We did, finally, get two glugs of unthickened barium (mmmm....) and two swallows of baby food into her. That was it. It took over a half hour to do this, and that half hour felt eight times as long. Anyway, turns out she is not aspirating on thins from the straw, that she is doing fine on baby food, and that we can thicken at our discretion. The excellent SLP who has been doing these studies (and did the FEES back in January) thinks that it's because of the resolution (i.e., control) of Hallie's reflux. Anyway, since we are better-safe-than-sorry proactive mommies, we intend to keep thickening the bottle at night and nap time because her suck is MUCH stronger then and she gulps a bit, and we'll back off from the rest a little. And it's good to know that when she drinks out of someone else's cup, she'll be okay. Unless of course it contains cow's milk, which is another story. But at least we'll know that she's vomiting due to allergy and not aspiration.

On the vomiting note: Hallie has had three more, non-serial, vomit free days in March. I think we're now up to a total of 8 vomit free days in March, and I believe 25 for the year. I want to try to keep a log of this. I know that sounds insane, but there you have it: I am a counting freak.

If you've made it through this post (awake), scroll down for a much more fun post with cute pictures below:

Silly Hallie!

Hallie is a very silly toddler. Some of her favorite games are incredibly silly. Months ago, you might recall, Sharon began to play "where's Grover" with Hallie. This involves making lots of "dah-dah-dah-dah" and "zhip" noises, flying Grover around the room and over Hallie's head and eventually stuffing Grover into Hallie's shirt or pants and making her remove him. She still thinks this is great, but she's branched out a bit:

Another thing that Hallie really enjoys is being smushed, preferably by Karina. This works out well because Karina, as the daughter of a former Rugby player (who gave this up after getting her PhD for a career as a consultant), Karina's got tackle holds in her genes. So she loves to run up to kids and hug them...and squeeze them...and knock them down.

Hallie adores this (though we make sure that Hallie's belly is not full when this happens because I think neither of the kids, nor their horrified parents, would enjoy any of the outcomes of this scenario terribly much).

So, after deeming enough Rugby to be enough, we had Karina modify the game a bit:

Suffice it to say that being dragged along the floor by Karina was nearly as much fun as being smushed by Karina.

Hallie's other latest greatest form of silliness involves climbing up on the table next to the couch and diving back onto the couch when we tell her to get off the table. An alternate form of this game involves climbing into the changing table portionof the pack and play located on the other side of the couch and trying to dive off of that one (to parts unknown). Now, technically, this brings her into compliance with the command "get off the table" or "no climbing into the changing table" or what have you. So we have to concede this one. But it doesn't comply with, or facilitate, our goal of keeping Hallie's head in one piece, remaining out of the CHOP ER and silly, frivolous stuff like that. So, over the past two days Sharon and I have each, independently, had to remove Hallie from the couch, stand her up in the living room and give her a talking to that went something like "You are not to climb on the table/changing table because it is dangerous and you will hurt yourself and so you are now officially banned from doing so". Needless to say, and as we both admitted readily to one another, the talking to made us feel better--like we were doing something proactive and being good parents and removing her from a situation that was dangerous, yada yada yada. It appears to have a less than effective impact on Hallie, who continues to climb. So, we need to start thinking about discipline, and hoping that the crocodile tears that this induces will not result in yet more vomiting.

Speaking of crocodile tears, along with ramped up silliness, we've also had ramped up terrible-two-tantrumness lately. Hallie loves to put my shoes on her hands and feet---which is okay with me---but lately she's also taken to trying to pull whatever remains of the fleecy inners of my clogs out of the footbed and EAT it. (Why does she eat fuzz and fluff and cardboard and not food is beyond me). This is not OK. My feet are none too sweet smelling and I cannot imagine that my clogs are anything but repositories for stinky stinky germs and she will not, under my watch, eat my shoes. I feel ridiculous even typing this. So I took them away. And she bawled. It was quite silly, really, and I did not give in, but I did suppress my desire to laugh at her. Eventually, with redirection she forgot (temporarily) about how good my shoe fluff tasted. Eeeeewwww.

Sunday, March 23, 2008

This Week in Hallie's World...

Well, I've done it again: I've fallen behind on blogging. I thought that this would be a good week to catch up on things given that it was spring break, but that seems to have not been the case. I've been busy grading (still more to go...deeply depressing endeavor), reading for class, and trying to invent creative and provocative classroom exercises. This all translated into a virtual blogging drought.

Anyway, here's the recap on our lives.

Last Sunday, we headed down to the Shore (as we lovingly refer to the New Jersey coastline) to celebrate Aunt Laura's 40th birthday. Sharon pulled a couple of all nighters putting together a masterful montage of Laura's finest moments (including some very good representatives of the variations of hairstyles for which the 80s are famous) but somehow we managed to not take a SINGLE electronic photo of the birthday girl herself. She had a great time and everyone loved the video, but spawn-centered parents that we are, we left the shindig with dozens of pictures of our own kids and none of Aunt Laura.

Suffice it to say that Hallie had a lovely time at the party. There was a nice open dancefloor that we were not using (since this was a brunch event) and all of the kids (various of Hallie's cousins, some of whom she had never met before) commandeered it as a play zone. Hallie gleefully entered the boisterous mahem and was particularly enamored of playing with Alex's truck, engaging in games of catch, and, especially, running back and forth like the whirling dervish that she is:

Needless to say, on Monday Hallie was totally wiped out and she's been needing to sleep a whole lot all week which makes us think that another growth spurt is imminent. All of this is to say that our prized possessions are in even further danger of being toddler-handled by Hallie and will need to be moved even further out of reach.

We also replaced our under-utilized Rainforest Jumperoo with Hallie's new art desk this week, and Hallie has been having a blast coloring at it. Mostly she colors herself and sucks on the markers, but some of her creativity has made it onto paper:

Otherwise: this week has been relatively uneventful. Hallie did have two more vomit free days in a row, flanked by other, alas, more typical days where she spewed forth in one way or another. And today (yes, Easter Sunday) we had an evaluation at a Feeding and Speech clinic that is covered by Sharon's insurance. The therapist seems knowledgeable (deals with both swallowing issues and apraxia) and, sort of a schlep of about a half hour and one state away. Sharon's insurance has no limit to speech therapy sessions AS LONG AS Hallie qualifies (and even with her complex medical history, who knows yet whether we'll face a fight to precertify services). This is far better than my awful insurance that allows 24 sessions combined of PT/OT/Speech per year and only at facilities totally inappropriate for a toddler who can't swallow or speak correctly (they wanted us to call the Sports Medicine team at Pennsylvania Hospital or a rehab center for adult stroke victims, which are the only two facilities within 25 miles that are in-network. WTF?????).

Anyway, the therapist feels that Hallie clearly needs some help with both of these things but that, with the correct help, she'll be a totally different kid in terms of eating and speaking within 6 months or so. We're happy to give it a try. There's so much research to do, and making sure we're on top of all of this, as well as Hallie's other medical concerns (GI, Pulmo, trying to get her covered again for Synagis--which she was dropped from this month but there's a chance the new insurance will cover it, Allergy, and her regular Early Intervention therapy appointments) means that we have a lot to juggle. Hallie really is such a sport about things and is totally happy to hang out and play in doctors' and therapists' offices, and in this we're lucky. She did not have to end up being as good natured as she is, and even with her toddler tantrums and testing (yes, terrible twos have begun!), she's the sweetest and greatest kid in the world and we're trying to be the best moms to her that we can be.

Enough rambling---now off to join the wife and daughter at Karina, Mark, and Vanessa's for Mark's yummy burgers. We LOVE our neighbors...having dinner cooked for you half the week (as well as the stellar company) totally rocks!

Sunday, March 16, 2008

Meet our New Speech Therapist

...none other than 2 year old Karina, our next door neighbor.

Happily, she has agreed (I have it in chalk!) to a mere 10 dollars an hour.

Seriously, though, she is the one person (toddler) who can get Hallie imitating. Her trick? Imitating Hallie. She does a very nice job of it and only occasionally gets frustrated by the antics of her slightly younger client. See for yourselves:

Actually, Hallie has been having a bit of speech explosion. She has been babbling and for once it sounds like really baby babbles. And while she still loses words (doggie is replaced by its corresponding sign, as has her 'read it' command and 'cookie' is nowhere to be found), she's also been gaining new ones. Her latest is 'wah-dah' for water and I am reinforcing it by turning on the water and letting her wash her hands in it. She loves it, but I do need to get her a stepstool since my back is killing me from lifting our 25 and half pounder.

More later on our fun visit with the family for the joyous occasion of Aunt Laura's 40th birthday.

Funky Hair Day

This morning when Hallie got up, she looked a lot like Rod Stewart at some point in the 70s:

Notice that she not only is sporting the spiky punk rocker look in front, but also a very well developed mullet in back:

Apparently it dried like this after her bath last night, and in a gravity-defying feat of amazing hair trickiness, it stayed like this all day. I kept explaining this to other parents at the playground; what I really should have done is dressed her in all black, put a mini leather jacket with safety-pins in it on her, and found a nice pair of size 5.5 doc marten high tops.

Thursday, March 13, 2008

The Ides of March...

Well, not quite, and not quite as ominous sounding as Shakespeare made them seem, in any event.

I just had to post a quick post tonight: we've had 2 vomit free days in a row! Yay! That makes it 20 for the year 2008 so far, which isn't too horrible (especially when placed in perspective of the last six to eight months of 2007). Indeed, almost a third of our days have been vomit-free so far this year, which amounts to a huge savings in terms of the number of trees cut down to make sufficient paper towels for cleaning up after Hallie. My gosh, she's practically got her own Green program going now, doesn't she?

And even more impressive (if such a thing was possible) was Hallie's fluid intake today. Ami really stepped to the plate and stepped things up today. Hallie had roughly 15-16 ounces of milk today, and another 5 or 6 ounces of drinkable goat-yogurt and another 5 or so ounces of juice (laced with miralax---which produced 3 very nice sized poops and one load of laundry that required soaking in Totally Toddler). That's over 25 ounces, folks! A new record, especially since she also ate about 16 to 18 ounces of baby food and numerous Veggie Booty puffs. So not bad at all.

On another note: Hallie has a new word: "Water". This one has lasted about 3 days so far and hopefully will join the pantheon of words-that-stay (which includes "Kitty", "Teddy," "Buh" (for Bert and Big Bird). She began saying "wa-dah" on Sunday night, and in a very cute way, does it along with the sign. It's a bathtub word and since Hallie loves her bath, she's more vocal there than she is at most times (I think she feels comfortable there....I wonder whether it's entirely unorthodox to do Speech Therapy with a naked child splashing in the tub). And she's been babbling more than usual. So maybe we're making
a bit of progress. Either way, I'm going to be spending a bunch of time on the phone with the three insurances that Hallie has (don't ask) to make sure we have all the codes and such right so we can get her into private therapy and, hopefully, get the cost of this venture (over a 100 an hour, and no one really seems to take insurance) covered to some extent. And then we have to hope that it works. But meanwhile, we have on our hands one very delightful toddler who delighted us even more by not
putting up a fight about sleeping tonight (the past three or four nights: sheer horror. Good thing she's cute even at 1:30 or 2:00am when she's racing around her room tearing it up!).

On that note, yeah, I know it's late, so it's time for me to get to bed, too!

Tuesday, March 11, 2008

Happy Birthday, Karina!

This weekend, Karina celebrated her second birthday. Time really does fly around here. We can still remember visiting Vanessa (with some yummy Capogiro gelato) right after Karina was born. I was so afraid to hold her--Karina was less than a day old and I'd never held a baby so small. Little did we know that in three short months, Hallie and Olivia would redefine "small" for us in ways unimaginable at the time.

Anyway, Karina had a stellar birthday weekend. On Friday night, the whole commune went out to Chuck-e-Cheese for dinner and entertainment. The bigger kids (Ethan and Karina are both two, so they get to be called big kids now) had a blast, Hallie had a pretty good time, but was a bit overwhelmed---she enjoyed going on the merry go round and riding in the Barney car and the like and kept signing 'more' for us to deposit another token, but refused to smile the whole time. We're going to try to get her out more so that we begin to redress this social fear to whatever extent we can.

Here's a great picture of Karina with her daddy, Mark, who is very intensely at play:

Hallie got to play with Karina on Saturday night, too, and was thrilled at the prospect. In addition to the Chuck-e-Cheese adventure, the girls had an impromptu playdate on Friday afternoon as well---they had not seen each other all week at that point. Basically, the more Hallie sees Karina, the more she wants to see Karina. I hear the feeling is quite mutual and that Karina spends considerable time at home asking to see Hallie. Hallie doesn't use words to ask for Karina, but she goes over to the party wall that we share and bangs it, or goes to the door and rattles it and begins to whine. It's pretty clear what she wants. And every time I take her down the block on foot or in her little car, she walks up the steps to Karina's house and begs to be let in. Very cute.

Sunday was Karina's big party day. This is the sort of smile that entering Karina's house elicits from Hallie:

All the kids had fun playing and being read to by various adult guests:

And Hallie had a great time devising alternative uses for chopsticks (the rest of us used them for very yummy dim sum):

And while Hallie's stay at the party was cut a bit short by an altercation with blue jello (her difficulty with this texture really makes me think that a big part of her eating problem is sensory in nature), she did get to see Karina for dinner again on Sunday and Monday nights. Hallie was in seventh heaven and we have some great pictures/video footage of Hallie having an extensive conversation with Karina last night. Generally speaking, Hallie is happier to talk to Karina than to anyone else in the world and we are beginning to think that we should put Karina on the payroll as our private speech therapist. Karina may or may not want this job, though. While she adores Hallie, Hallie did boink Karina on the head pretty hard last night while leaning in to kiss her best friend (and I also think Karina may be a bit creeped out by Hallie's slobbery open mouth kisses, to boot!). This had Karina beating a hasty retreat when Hallie leaned in again a few minutes later. Nothing like a good Hallie boink (the kid really has a hard head!) to make you summon all possible self-protective measures against future head boinking.

I'll try to get around to uploading the video later on, since it really was a nice exchange (and hopefully we will be able to hear all of Hallie's very soft chattering throughout the conversation). But meanwhile, I just wanted to close by saying that Hallie has definitely been speaking more the past couple of days. This may or may not be related to the new fish oil dose (10 ml), and the upsurge in vomiting also may or may not be somewhat related to this increase. But she has been speaking more and last night kept repeating "wada" (water) and doing the sign for "water" over and over again. Let's see if we still hear it today. "Mama" is being used very sparingly and "kitty" "whas dat?" and "teddy" seem to still be the most stable words in Hallie's rather thin repertoire. Meanwhile, we got the write-up of her speech eval, complete with a long list of goals that neither of us can imagine Hallie achieving, and certainly not within the next three months. This was pretty shocking and depressing but we're doing what we can to get her into private therapy as quickly as possible and we're reading up on alternative techniques for providing therapy to an apraxic child and these might be helping some, too. We'll take it one day at a time, hope we can make some reasonable progress and pray hard that the words Hallie is saying become second-nature to her and that we hear them all the time.

On the eating front: no progress. Last week was one of the worst refund weeks ever (Sunday was a record bad day for 2008 with 5 separate vomit-cleaning occasions and the average has been twice a day for the rest of the week). We're not really sure what is going on, but it could be the extra calories in Hallie's food, it could be too much in the way of banana and not enough in the way of liquids to move things through her system, but whatever it is, we are officially tired of it and want it to go away so that we can rest a little and not have to refeed our kid five to seven times a day. And in terms of feeding, our new OT will try to work with Hallie on this some. So Friday we have a date with some mashed potatoes and rigatoni. I can only imagine what that's going to be like, but at least I'll have a professional around to keep Hallie distracted while I clean up the mess!

To not end on such a sour (stomach) note, I'll leave you with a cute picture of Hallie's belly. Our girl can now completely undress herself as long as there is no onesie involved, and perhaps even if there is. Isn't her tummy cute?

Wednesday, March 5, 2008

The Weigh-In

The weight is back! Yay! We just visited Hallie's pediatrician for a weight check and found out that all of our hard work this past two weeks has really paid off---Hallie gained a pound in 10 days. Woo hoo! Let's hear it for 30+ calorie goat milk formula and 6 ounces of baby food per meal. She now weighs 25 lbs. 5 ounces (an all time high for 'playing weight').

She's still snarfly, though, which sucks, since it means that we are back to our daily refunds. But her ears are clear and she's clearly not feeling ill. It's either a cold or teething (she seems to be getting her first year, second year, canine, and eye teeth all at the same time. Lucky us!). But either way, she's weathering things well and we're glad for it.

We also talked to our pediatrician about our speech concerns and, while he feels that Hallie is still a bit young to warrant serious concern, he understands where we're coming from, and, as he put it, we need to get her the best possible therapist because she's an amazing little girl and deserves the best. We love this about our pediatrician. We pretty much love everything about our pediatrician. Anyway, so he is all for me drafting the kind of letter that will work with our insurance, he'll add in a lot of serious-sounding medical stuff that makes our argument compelling, and that's all we need to do. No neurologist (he doesn't think that hooking her up to a bunch of electrodes and subjecting her to a lot of tests will tell us anything that will prove helpful), no developmental ped. Just one really supportive doctor. This rocks.

Otherwise: Hallie's sorting skills keep getting better and better everyday and she's beginning to pretend play: she's feeding me and her babies from her favorite Duraclear margarita glasses (that are still proving to be indestructible, amazingly enough). This is very cute. She is also all about cuddles and kisses right now. And she did the cutest thing this evening. We were watching one of our new Signing Time DVDs (volume 10: "My Day", which is already one of my favorites) this evening after we got home from the pediatrician's. The video opens with the kids waking up and beginning their day. The second sign Rachel teaches us is "good morning." Well, Sharon and I kept on repeating 'good morning' and learning the new sign. Meanwhile, Hallie raced off to her bookshelf and found her book "Good Morning, Little Bert," and brought it over to us. As Telly would say, "she is sooooo smart!" Of course we proceeded to read it and SIGN it to her. I know it's only at the preschool level, but heck, our signing is getting pretty good too!

Finally, it seems like Hallie is about to step down to one nap a day. This is not our call, but hey, we all know who calls the shots around here and it ain't us.

Cute pictures later's way too late to fiddle with downloading and uploading!