Hallie-isms

Hallie is extremely fond of a good metaphor.  Here are just two recent examples:  Papers fluttering in the breeze "look just like leaves on the tree."  The argyles on her socks this morning "look like diamonds; they are just like the kites flying in the sky."  So I suppose that we should not have been surprised when she came out with the following the other night:

Hallie and Sharon were in the bathroom for pre-bedtime hanging out on the potty.  Hallie let out a very loud fart and exclaimed, concerning the constipation that apparently was the underlying cause of this:  "Mommy, there's a traffic jam in my tushie!"  We found this hilarious and quite clever.  And also promise to delete this post from our blog before it can become a source of embarrassment to our poor kiddo. 

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On an unrelated matter, Hallie apparently has apparently embraced the roles that Sharon and I have carved out for ourselves (by design or by necessity).  The other morning, Hallie was talking about an upcoming visit with friends and family (loosely based on a melding of a real impending outing with an imagined one fashioned after an episode of Mickey Mouse's Clubhouse).  She was describing how she'd be taking a choo-choo train and said, "I'll sit next to Hannah and Adam and right near my friends Eliza and Taylor.  Mommy will be in the diamond car."  I innocently inquired:  "where is Mama going to sit, Hallie."  Hallie pointed to me and stated, emphatically:  "You're staying here Mama.  You'll be in the kitchen, cooking."   I guess she notices that I do all the cooking around here, no?  Given Hallie's relationship to food, however, I am not sure whether this is a compliment or an insult.

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The outing that we went on, to a local farm/orchard/pumpkin patch, was organized by our friend Anne, mom to the one and only Eliza Grace.

The farm hosted a small array of barnyard animals, a wagon ride around the stable, some toy tractors and John Deere trikes that the kids could toodle around on in the yard, pumpkins to pick and to decorate, and pony rides.  Our kids loved the animals the most and Lea was thrilled to have a chance to ride the horsies.  They also got into painting their pumpkins and listening and dancing to the band.

Halloween has long been one of Hallie's favorite holidays.  I'm not sure if it's the dress-up aspect (she loves clothing adorned with witches, and pumpkins, and ghosts, etc, as well as full-on costumes), the controlled spookiness of it all (Hallie has been talking about goblins and other scary creatures of late), or just the chocolate (the kid does love her chocolate, but only the plain stuff).   Or maybe it's the fact that she came home from the hospital ten days before Halloween and this is the first holiday of the year that she spent with us?  Who knows.  Whatever it is, it's great fun to see her so happy.  And since Hallie's happiness is infectious, we all end up smiling a lot this time of year, too.

Hallie astride the biggest pony at the farm:

Hallie and Lea dancing around and being silly.

Lea taking her turn on the pony.

Me giving Eliza Grace a ride.

 She also rode a pony and looked good doing it.

And of course the kids had fun clamoring on a miniature John Deere tractor.

A great time was had by all.  Unfortunately, Hallie did develop the sniffles by late in the afternoon.  In retrospect, she appears to have been developing a cold all week (hopefully not a result of the flumist.  Now that she had her bout of pneumonias, I do think it's time to return to the conventional flu shot instead).  But she began to seem run down by late in the day yesterday and has gotten worse throughout the day today.  By tonight she was running a fever of close to 101 degrees.  We're hoping that preemptive flovent and albuterol will keep the junk out of her lungs.  Please cross your fingers on this one since we really cannot (or at least do not wish to) return to the cycle of pneumonias that plagued our kiddo for the better part of last winter and spring.

Pneumonia Redux

Yup, it's happened again. Hallie was just diagnosed with pneumonia for the second time in three months. This time we did not let things get too bad because we knew what to look for: regular low grade fevers that were getting higher steadily; the cough (which came on a lot quicker this time around); a total eating and drinking strike; lethargy; shallow breathing; and the oh-so tell tale burning sensation that Hallie was feeling by her left shoulder blade.

Sharon brought her into the peds today and Hallie was satting a crappy 95. The fever was controlled with tylenol, but the very careful doctor took one look at Hallie's medical history and sent her right up for a chest xray. The left lobe, and particularly its lower section, was very occluded and looked like crap (I think that's the technical medical term). It was a bit hard to tell if this was what her lung looked like healing from the last bout of pneumonia or whether it was a new bacterial infection that had lodged in her not-quite-healed lung. But given her lack of symptoms for three months and the rapid onset of symptoms between Friday night and today, they have decided that it's most likely a new pneumonia. So as of this evening, Hallie will be back on amoxicillin (capsules dumped in apple sauce) and hopefully that will relieve her awful cough (sounds like she's hacking up a lung, which I suppose she is) and get her back on track.

And so, once more, Hallie quickly managed to gain a tremendous amount of weight (she was 33 lbs 8 ounces two weeks ago, stripped naked) and lose it again even more quickly (today, clothed and in a pull up she was 33 lbs even, so she's probably around 32.5 lbs, max, at this point). We're not so worried about her eating right now (she hasn't eaten in three days pretty much at all) as much as her drinking. Dehydration on top of pneumonia would buy us a nice bed in a shared room in CHOP really quickly. And we definitely prefer the notion of staying home.

Home!

Hallie busted free this afternoon (with doctor's permission, naturally). She couldn't wait to leave the joint and was thrilled to pack herself into the little red Radio Flyer wagon that she adopted while at CHOP and get the heck off of the 4th floor of the Seashore House. However, when offered the choices of 1. going straight to the car and coming directly home and 2. passing through the CHOP gift shop and getting a balloon (as I noted a few posts ago, we reward our kids for their trauma by buying them something because, as anyone who has ever been to our home already knows, we don't have enough toys and assorted stuff crammed into our tiny space just quite yet), Hallie responded eagerly with a very resolute "BALLOON!" So now we have a 3 foot Dora (a current favorite of Hallie's) residing alongside the still-inflated bouquet of happy face balloons.

Hallie was relieved to see me and Lea and to get comfy here at home. She was also thrilled by her bath today, which was extra long and involved a lot of 'building' of shaving cream towers with the foam soap that Santa left in her stocking. She took a nice long nap, ate some food. This was not much, but, over the course of the day, managed to ingest a slice of bacon, an ounce of her goat cheddar, some french fries and goldfish crackers, and about two bags of cheese puffs that are utterly lacking in nutritional value but do have some calories, three apple juice boxes that helped us keep her hydrated and, most importantly, about 13 ounces of her fortified goat milk. It's been a good week since she's had any goat milk, which is still the mainstay of her diet and contains her multivitamins, and no doubt this, plus the general malaise of fighting pneumonia and the racing metabolism associated with a fever and elevated heart and respiratory rates, account at least in part for the severe drop off in Hallie's weight. According to our home scale, she is a whopping 30 lbs. 6.4 ounces right now, down from about 31 lbs. 8 ounces two weeks ago. She seems to have also grown in stature and is probably about 40 inches tall right now, so she's essentially a string bean. She weighs less than she did last May, which is worrisome to me. But at least she is not refusing her beloved "ba" (bottle) anymore so maybe she'll pick up steam in the eating department soon.

We found out from the doctors that there are no particular restrictions on her activities at this point, so, as long as the fever stays at bay, she'll be able to go back to school on Monday and to her therapies this week. We were also able to celebrate a somewhat belated New Years this evening with our friends Renee and Kim and their daughter Taylor, and this made us and Hallie very, very happy. Taylor, who is 18 months old, adores Hallie and Lea and they feel the same way about her. The kids had a blast crawling through our play tunnel, making music together, and drawing at the easel. They kept each other amused and the four of us were, for the most part, able to have adult conversation and sit at the table while they all played. This is something pretty new for us. Brief interventions were only needed when scuffles broke out over toys; Lea or Taylor wanted to nurse; and when Lea grabbed hold of Hallie's two-bite brownie (Hallie did not mind) and shoved the whole thing in her mouth and made a mess (she had no problem eating the whole thing; she just had lots of chocolate on her face that required fairly extensive clean up).

We did manage to get the amoxicillin powder (from an opened capsule) into Hallie this evening, which is a relief. Hallie experiences sensory vomiting with some medicines, including ibuprofen and all of those nasty pink bubblegum flavored antibiotic suspensions, and we were not sure how she'd do with the powder (which is no doubt bitter), even if it was mixed into applesauce. We did not (and do not) relish the idea of bringing her to the ped's office for daily shots of antibiotic, so let's keep our fingers crossed that she can continue to take her meds this way for the next nine days.

On other, loosely related developments: Hallie is now drawing faces that are pretty darned accurate. A month or two ago, she'd draw a circle for us, but, after the points of her pen or crayon met, she'd continue to go round and round (so that the resulting product would look more scribblish than circlish). Over the past couple of weeks, she has stopped doing this and instead draws a circle and stops when the points meet. She places eyes, nose, and mouth in the proper place (though she does not yet accurately distinguish between a happy smile and sad downturned lips), and will add in ears, chin, hair and a body if this is requested of her. And tonight she drew a very accurate looking sun in the sky when asked to do so. She is also attempting to draw her own hand and asked me to help her turn it into a chicken (I think she meant turkey; this was something I tried to do with her back around Thanksgiving and she expressed no interest in my turkey hand art at that point but clearly remembered that hands can look like various species of fowl). And she loves carrying around her 'notebook' (a little spiral bound notebook I picked up for her at Rite Aid) and writing down 'clues' in it, a la Blue's Clues (another favorite show of hers). It's very cute.

OK--it's super duper late (the kids were both up very late due to massively disrupted schedules that somehow have to right themselves by Sunday evening) so I should end this here but I do promise to talk about Christmas at some point before Valentine's Day!

Ushering in the New Year at CHOP

Sharon took this picture of Hallie just around the time of her admission last night (or early morning, really). It took a while for the nurses to start Hallie's IV so that she can get antibiotics and fluids into her system and then even more time to find a room for her. Hallie and Sharon weren't settled down into their new (and hopefully very temporary) digs until around 4am. As you can see, Hallie was exhausted. She was a great patient though and balked only at the blood pressure cuff and IV stick; otherwise, she was a charming little girl who cooperated with her nurses and doctors throughout the whole process and kept thanking them for doing things like taking her temperature and listening to her heart and lungs.

Meanwhile, back at home, Lea and I found ourselves awake, too. Neither dark quiet time nor a bedtime bath really settled Lea down. She was missing her mommy and interested in going to sleep in her arms (and at her breast), not mine. Finally, some very vigorous rocking did the trick at around 2 am. I collapsed in bed with her, my bottle in the cooler at the bedside ready for when she inevitably woke up seeking out Sharon to nurse. That happened some time between 6 and 7 am and Lea's response to the bottle was none too pleased. When she realized that mama, and not mommy, was in bed with her, she began to thrash and kick and give me a tongue lashing (she makes these very annoyed back-talking sounds --a very guttural and prosodic "rah-rah-rah-rah-rah" that suggest her deep displeasure with you when you don't do something she wants to do or deny her something she wants to have). I whipped out and presented the bottle to her but she was having nothing of it and began to kick me more fiercely. Then I tried to place the bottle in her hands (she likes to hold her own bottle and not have it held for her). She grabbed it and threw it at least a foot. And began to thrash, kick, scream, and backtalk some more. This lasted about fifteen minutes. She then seemed to collapse from exhaustion but in fact was only gathering more steam for the next battle, which lasted just as long. Finally, some time after 7, I managed to shove the binky in her mouth and get her to sleep.

Both Lea and Hallie slept until well past 11 am. The nurses and doctors assessed Hallie while she was asleep and decided that she needed to spend another day and night at CHOP: it seemed imprudent to discharge her because of her oxygen saturation, which was hovering in the lower mid 90s (93-94) and never exceeding 96; needing to make sure Hallie wasn't reacting to the antibiotics she was being administered; and the very real need to ensure that Hallie doesn't get dehydrated (which is especially a problem now that she is refusing to drink her milk entirely and is seriously limited in terms of intake more generally---she looks painfully thin right now). Fortunately, Hallie did not need to be placed on oxygen, but she needed (and continues to need) IV fluids right now.

Sharon did find out that it would be possible to bring Lea over for a visit. I was of two minds about this: on the one hand, Lea missed her sister and needed to nurse (and Sharon needed to nurse her just as much). On the other hand, bringing her to CHOP places her at a greater risk of picking up some yucky bugs (it places Hallie at just as great, if not a greater, risk, too). But we decided to bring her in since we could keep her in the room with Sharon (there's a pretty comfortable bed/couch for parents in the room). So Aunt Renee shuttled us off to CHOP early this evening and we spent a few hours there.

At first Hallie was pretty lethargic and subdued. Renee was worried about this. But after a popsicle, she perked up and we took the kids on a wagon ride through the hospital. The kids had a blast (and particularly enjoyed the relatively fast downhill run in the corridor between the main hospital and the Wood building).

but once 7pm rolled around, Hallie was exhausted and weepy again (this has been the trend the past few days). She was none too thrilled about eating her dinner and managed only to get in a couple of bites of fish stick, a slice of apple, one fry, and four sips of apple juice. (Lea, in contrast, happily ate a bunch of food, of course). She quickly began to lose it, so Renee, Lea, and I headed home. An hour later, Hallie was up and crying for me. This broke my heart. She was inconsolable and, as of my last conversation with Sharon at midnight, remained so.

Lea slept happily for a couple of hours and is now awake again. I fed her some more food (the kid can eat), another 6 ounces of bottle, and changed her diaper and got her into jammies. And as soon as this is done and posted (in a matter of seconds), I'm going to try to get her down again. Anything short of 2am will be a victory, of sorts.

So this has ended up being a very different way of ushering in 2010 than anyone ever expected, but hopefully things improve from here.

I hope everyone out there reading this had a happier new year celebration and wish you all health, peace, and love in 2010.

Hospitalized

Well, they don't like what they see or hear (her left lung looks pretty bad) and want to keep Hallie at CHOP for at least 24 hours. They suspect it's a bacterial infection and have started her on IV antibiotics. Her pulse ox is hovering around 95, as long as she is not crying, and then it's in the 80s. Unfortunately, the sound of the monitor beeping is all too resonant for her and scares her, so she was whimpering in the background while Sharon updated me on Hallie's status. Come to think of it, monitors scare me, too.

I can't believe that Hallie gets to usher in the New Year in the hospital. Poor kid.

Out with a Bang....

Hallie had a very nice Christmas eve and day with her cousins (more about this later, I hope) and a lovely time with Eliza Grace on Boxing Day (which extended Christmas for the two of them...both are entirely enamored of opening presents...She is still asking us to "do Chanukah" every night because that means more presents to open). Sadly, though, she came down with a fever while at Eliza's Nana's house (we didn't know this until we got home; the condo was warm and the oven was on and so it didn't seem so concerning that Hallie was flushed but, in retrospect, flushed=fever in Hallie's world). She cried and vomited in the car on the way home from the greater Princeton area and was clearly sick by Sunday morning. She ran a pretty high fever all day on Sunday, topping out at a troubling 104 F + (we take her temperature under her arm and axillary temps are none too reliable). We called the after hours practice and the very cautious doctor on call (whom we like a lot) had us bring her into the ER at CHOP. It seemed like a garden variety viral infection to the ER docs and so, as long as she could stay hydrated (and she could, since the vomiting was not persistent), she was free to go. Monday was more of the same. Tuesday she seemed better by the afternoon and had not been running a fever all day but the fever had returned by the evening, though less virulently than it presented the day before. Today, Wednesday, she seemed totally normal and so the virus seemed to have abated. She even wanted to eat (ate about a slice of bacon and a slice of buttered toast, which is more than she's consumed the past three days combined). So the worst was over...

...or so we thought. Tonight the fever returned. Our axillary reading (100.7) was lower than what her fever turned out to be (at least a couple hours later, when it read 104, rectally, at CHOP). But more troublesome was her grey/blue ashen color, which seemed very off to me, and her rapid, labored breathing. We called the after hours practice and the nurse had us count her respiratory rate. Over 40 breaths per minute is troublesome; Hallie was at 57 by our reckoning. So Sharon brought her back in. At triage, her pulse ox was reading 90-92 and never went above 95. Her chest sounded 'squeaky'. And her heart rate was over 160.

Of course, Hallie, being Hallie, was a charming patient who was very engaged with her doctors and nurses and teasing and playing with them. She has a bit of an appetite, so she ate a saltine and at last update was working on a graham cracker. She acted fine. But her chest xray indicates otherwise.

The upshot: pneumonia.

They are trying to figure out whether she gets to stay at CHOP for New Years Eve (oh joy!) or come home and recuperate here. I haven't heard anything from Sharon for a bit, but my sense is that it will depend on whether she needs to receive any oxygen therapy (or at least be in close range of nasal cannula...what a horrific thought, given that she came off the Os 3 years ago now).

So 2009 is going out with a bang. And not a festive one, either.