How Old is Hallie?

Lilypie Fifth Birthday tickers

How Old is Lea?

Lilypie Second Birthday tickers

Thursday, May 26, 2011

Vocal Cord Surgery: The Picture

This was the picture that Hallie's ENT gave us after the surgery yesterday.  What you are looking at is a magnified image of her vocal folds (taken via the camera attached to the scope).  You will note that there is a bubbly area that is white---that's some of the material that Dr. Z injected to 'bulk' Hallie's paralyzed fold (which is on the left--it's the one that looks a bit irritated).

In case you are interested in learning more about normal and abnormal laryngeal function and vocal folds, you can check out this website.

Hallie's voice today is still hoarse but definitely louder than it had been prior to surgery.  It's nice to hear her more easily.  I'll try to capture a video/audio of Hallie reading or something and will post that soon.

Wednesday, May 25, 2011

Surgery Complete!

Hallie was a model patient and cooperated throughout even though she was pretty scared.  The worst part was recovery and getting her IV taken out (can't say that I blame her, really).  But Sharon was there with her as Hallie woke up and that helped a bit.

Hallie's voice sounds a lot louder but is still quite hoarse (think:  loud frog with a touch of laryngitis) but it should even out in tone a bit as the irritation from the intubation and having the scope down her throat. 

We got a very cool picture of the injection site and I'll post that later as soon as we can scan it.

Vocal Cord Surgery Day

Hallie and Sharon were off to CHOP bright and early this morning so that Hallie could be prepped and sedated for her latest round of vocal cord bulking.  At least this time they did not need to be there at 6:00am and instead had a comparatively late arrival time of 7:00.

Even though Hallie would like her big voice back (since whatever benefits of the temporary bulking have long been reversed and it's nearly impossible again to hear the kid), she was quite nervous and scared about the impending surgery.  Over the past few days, we've been discussing it with her in preparation for this morning.  She remembers the last round and we find it much better not to try to spring difficult things upon the kid; introducing things to her via social stories is far preferable. Hallie generally is a model patient and letting her know in advance what is expected of her usually works quite well.

Anyway, we do hope that the surgery proceeds as quickly and smoothly as it did last time.  The worst part is the anesthesia (coming out of it more than the process of sedation).  But the surgery itself is very quick (it took five minutes last time; however, it's quite high tech and involves robot-guided needles attached to cameras that inject the paralyzed vocal cord with an expensive bulking agent.  Dr. K. will guide the robot by watching the action on a computer screen.  It's all pretty amazing stuff and we are lucky to live so close to CHOP, which is one of the few places where this sort of surgery is done.  I think the last surgery, which was just a test using saline, cost something like $15,000.  This one is probably going to be even more expensive.  Thank goodness we have insurance coverage and our insurance isn't giving us a hard time about paying for this surgery).

Anyway, to give you an idea of what Hallie's voice will sound like, I am uploading a couple of videos I took at her last ENT testing.  This was about two and a half months after the last surgery was done and half of the benefits of that surgery had already worn off, but  this should give you some sense of Hallie's vocal quality.  We are hoping that what we are able to hear from her after today's surgery is better than this but bear in mind that the voice you will hear when you listen to these videos is MUCH stronger than her voice was pre-operatively:

I will update later on today to let everyone who reads this know how things went!

Saturday, May 21, 2011

Kids on Couches

The kids spend a lot of time on our couch.  They jump on the couch; they fall asleep on the couch (this used to be a prime napping zone and it's still where Lea falls asleep every night); they stand on the couch looking out the window; they climb onto, tumble over, and hang out behind the couch (where their millions of stuffed plush creatures reside).  While I will not miss the couch (and its mate, the chair) once we so trash them that we really do put them outside to be picked up and/or turned into firewood, I imagine that the kids (and the cat who has ripped up the couch and chair) will lament their absence.

Anyway, here are a few random pictures of the kids on the couch that I took (and never posted) this winter.

Our heat was out in this one.  We have a pesky boiler that we installed new when we bought the house but that has a piece that blows out constantly.  The piece, called a thermal coupler, costs about $3.00.  The heating repair folks charge $300.00 to replace it.  Sharon has learned how to do it herself and has saved us about $2990.00 over the past ten years.  But sometimes it takes a day or two to track down the right part when we run out of the stash we maintain, so the kids were huddled up in blankets on the couch while Sharon hunted down the correct piece.  They looked awfully cute when doing so.

In this picture, Lea is pretending to be a dragon.  She makes an awfully cute dragon, but I am not sure why the blanket's makers decided that dragons are orange.

And here Lea has fallen over, fast asleep after a session of jumping on the couch. 


This week, Hallie was discharged for the very first time by one of the specialists whom she sees at CHOP.

When we got home from the NICU 4.5 years ago, we immediately set up appointments with pulmonology, gastroenterology, otolaryngology, and ophthalmology.  Over the years, we've added orthopedics and developmental pediatrics.  And we've always considered ourselves lucky because we have never needed to see a cardiologist, neurologist, nephrologist, and a bunch of other folks whom I am sure are very knowledgeable, personable, and at the top of their fields but whom I prefer not to get to know up close and personal.

Anyway, we see most of the aforementioned specialists twice a year, which is about an average schedule for a former micropreemie, though there were times that we had to go in to GI or Pulmonology three or four times a year when Hallie was going through particularly rough spots.

This past year, we ended up needing to see Ophthalmology an extra time because one of Hallie's OTs (there's been a lot of turnover at both the private practice and school-based agencies that see her) thought that Hallie wasn't tracking properly.  We had also begun to note a pronounced squint and facial tic developing and were pretty concerned.  Hallie had developed advanced Retinopathy of Prematurity (ROP)  (she was at Stage 3, Zone 3, with Plus Disease, which means that the blood vessels behind her retina were severely abnormal and she was getting close to the point where her retina could have detached).  Things were so bad that the mobile CHOP Ophthalmological team had scheduled her for bedside laser surgery.  They checked her out the night before surgery (they'd come into the NICU with their crazy headgear, dilate the babies' eyes, and check them out.  This all would have been super cool were my kid's eyesight not at stake).  And lo and behold, the ROP began to resolve.  They continued to check on her every few days, and then every week, for the next eight or ten weeks (we had weekly appointments at CHOP to see the eye specialists after discharge).  But things were looking good.

Still, Hallie's eye doctor warned us that it was extremely likely that Hallie would require glasses by the time she reached school age.   Pretty much all kids who have the laser surgery do, but most kids who develop such severe ROP require them as well.  We could live with this (I am extraordinarily  near-sighted and while I would prefer to see well, or even better, and while this has affected my peripheral and night vision even more than my daytime vision, between glasses and contact lenses and possible corrective surgery, there are fairly easy measures that one can take to rectify poor eyesight).

Anyway, we were all geared up for this to be the year that Hallie would need glasses.  Instead, Dr. D. cheerfully discharged Hallie:  as it turns out, Hallie sees 20/30 in her left eye and 20/40 in her right.  She is at no more risk than anyone else for needing glasses and while we are welcome to come back any time (which we will if we think she does need glasses; why go to Pearle Vision when you have the fabulous CHOP docs right in your 'hood?), we need not make a follow up appointment for Hallie ever again.  At all.

That does not mean, however, that we will not be seeing the lovely Dr. D. in six months.  As it turns out, she would like to follow up with us for Lea.  At Lea's two year well-baby check up (the same one that turned into a check-up for a raging double ear infection), our ped. noted that light was reflecting off of her cornea unevenly.  This could be a sign of strabismus, where eyes do not look at an object at the same time.  So he wanted us to check this out, and as it turns out, Dr. D. is an expert in both ROP and strabismus.  She does not feel that Lea has it (instead, she thinks she's got a condition appropriately called pseudostrabismus).  But, since strabismus is a fairly serious condition that can lead to permanent vision loss and requires treatment, she wants to see Lea in six months to be sure that her diagnosis is correct.  So we'll be back at CHOP Ophthalmology in the fall.

Meanwhile, just a note about how good the kids were at the eye doctor:  We got into the exam room and Hallie immediately sat down in the examination chair (she's sort of an expert patient, which makes things really easy for us, but is a bit sad when you think about why this is the case).  When the assistant (maybe a fellow?) came in to do a basic examination before Dr. D. saw Hallie and Lea, Hallie said to her: "Hi Dr. D.!"  The assistant told her that her name was Samantha, so Hallie said, "Hi Samantha!  Do you want to see my books?  This one (pointing to a Dora book) is my favorite, and this one over here (pointing to Danny and the Dinosaur) was mommy's favorite when she was little!"  This is a major indicator of how far Hallie's social skills have come this year.  A year ago (two months ago, even), she'd never have been so personable, and would certainly not have initiated conversation in this manner.

Hallie happily read the eye chart for Samantha.  Then she greeted Dr. D. warmly and chatted with her.

When it was time for Lea to read the eye chart, Hallie asked if Lea could sit on her lap.  We put Lea on Hallie's lap and had her attempt to decode the shapes on the screen.  Since Hallie was reading the eye chart with letters at 18 months, Dr. D. wanted to try Lea with the letter chart, but that was a no go.  Everything except for the letter "O" was a "K" and this was not helpful.  So we resorted to a shape chart, but even this was hard for Lea, who predictably identified circles correctly but mixed up squares and triangles.  So we gave Hallie a card with the various shapes on them to hold and asked Lea to point to the correct analogy to what she saw on the screen. 

In the old days, Hallie would have just shouted out the answers (she is a bit of a know it all who in the past has demonstrated limited self-restraint).  But Hallie listened to our directions to allow Lea to do the work, controlled herself admirably, and held up the chart so that Lea could point to things on her own.  I was so proud of her.

Anyway, even with the tiny meltdown that the eyedrops induced (telling kids that they are "magic drops" does not, in fact, make them any more acceptable or less uncomfortable), the kids were fabulous and the appointment could not have gone smoother.

Next up:  vocal cord surgery for Hallie on Wednesday.  We are sort of excited about this because her voice has gotten pretty weak again and I know that she wants her big voice back.  So wish us luck.  We are pretty old hat at the anesthesia-and-surgery-thing but still it kind of stinks that we have to keep doing this.

Friday, May 20, 2011

The One Where We Forgot to Blog about the Second Child's Second Birthday

The good news is that Lea is a few weeks away from being 2.5 years old.  The bad news is that her moms, in their constant state of being harried parents who are finding it increasingly challenging to juggle parenting, two full time jobs, the great search for an appropriate kindergarten, and general household duties like folding laundry, taking out trash, and changing yet another failing garbage disposal, have somehow neglected to blog about their second kid's second birthday.  It's a pathetic truism that there are fewer pictures of the second child than the first, but this seems less motivated by intentional neglect than the exponential speeding up of time that ensues when one is chasing two kids in two different directions and still attempting to remain centered.  Whatever that might mean.

So in the spirit of attempting to rectify this situation, I present you with a brief (and I mean brief) pictorial timeline of the week long celebration of Lea that occurred at the end of January.

Behold the Cookie Monster cupcakes:

These were very much a collaborative endeavor.  Lea was really into a cookie monster phase (which we find interesting and a bit odd considering that the kid does not watch Sesame Street at all.  Instead, she favors her sister's 'shows' -- this is what Hallie calls them.  So Lea's viewing tastes run in the direction of Ni Hao, Kai Lan! and Dora the Explorer, which Hallie is only beginning to sort of outgrow).  Anyway, Lea loved/loves Cookie and we decided to make her these cupcakes.

A few observations about cupcake making:

1.  Do yourself a favor.  If you are going to make 36 or 63 or 122 cupcakes to bring in to preschool, buy a mix.  Duncan Hines has some great ones.  This runs counter to everything in which I firmly believe (apparently, my mom's lessons about baking from scratch sunk in completely despite the fact that she rarely let me actually help in the kitchen and tried to pass off doing the dishes--which she abhorred--as a glamorous component of baking).  But cupcakes are a major pain in the butt; kids like things sweet, and no one eats them anyway.  So just buy a few boxes.

2.  Don't be afraid of taking this task on.  After all, someone else can do the actual decorating.  Preferably someone else like Sharon, who is, after all, an architect who is meticulous and detail oriented.  So, really, all you have to do is buy the materials.  A couple of trips to Wegmans, finding a nice recipe for frosting on the internet, and a couple of emergency trips in medias re to the grocery store to procure yet some more confectioners' sugar and you are set.

3.  Be tolerant of sweets.  The whole house smelled like powdered sugar for a several days running.  Cooking dinners that involved the consumption of lots of garlic helped restore the olfactory pH of the place by the end of the week.

4.  Buy an awesome cupcake carrier.  Buy this one. Ours is an oh-so-fashionable lemongrass and really works.  But don't plan on balancing it on top of your double stroller.  This is impossible to do once it is filled with 36 cupcakes and is still not advised when empty.  

5.  Plan on showing up at school for the event, even if you need to be at work.  Attempts to get teachers to both take and send you pictures often prove futile. 

Anyway, this explains why we have no pictures of Lea blowing out her candles at school, but we are assured everyone had a great time.  No one seems to have suffered in a long lasting way from sugar shock, either.

Of course, we were not satisfied by the notion of just having a school party (especially since neither of us were able to attend).  It's kind of hard to figure out what to do to celebrate a two year old's second birthday when said birthday takes place at midwinter.  Fortunately, we are blessed with kids who love to see shows and who are excellent audience members.  We are also extraordinarily lucky to be living in the middle of a city that has a lot of cultural offerings for kids, many of which are quite reasonably priced.  So after some major research, we decided to take Lea and a few of her/our friends to see a matinee of Harry the Dirty Dog:  The Play,  which was being produced at the oldest theater in the United States, the Walnut Street Theater.

Given that we needed a whole bunch of tickets and got a comparatively late start on things, we ended up with nose-bleed seats.   No one's nose actually bled (though there was some running here and there) and we all had a good time despite this.

The kids got all dolled up for the production:

After the theater, we came back to our place for some snacks, followed by cake.

The theme of the day was dog (though we did not serve hot dogs.  At that point Lea did not eat hot dogs, so that would have been a poor choice).

Instead, we went with Snoopy and a Peanuts theme:

This time we outsourced the decorating to Wegman's.  We drew a mock up of the cake and purchased all sorts of plastic/PVC figures to place on the cake ourselves (since apparently Snoopy/Peanuts designs have fallen out of favor and have been supplanted by the likes of Dora, Diego, Elmo, Disney Princesses, etc.  We are finding that the same is true of Puff the Magic Dragon, who is the guest of honor of Hallie's upcoming 5th birthday celebration).

Anyway, Lea thought her cake was grand (and so did everyone else.  Wegman's does mighty tasty cakes for a mere $26.00 for a half sheet.  We highly recommend them). 


Here's a picture of Gina, Jake's mom, with Lea:

The girls loved the Mickey Mouse ears that they got from Aunt Laura, Uncle Bryan, and the kids (not a birthday present, but a souvenir from the cousins' Christmas/New Years trip to Disneyworld).  And everyone really enjoyed (and still enjoys) the awesome keyboard that Jake and Gina gave Lea for her birthday:

As the day wound down, Hallie was able to have some quality time with her sister (which she devoted to giving Lea some raspberries--still a favorite activity of our belly-button obsessed two year old).

And, since we have the benefit of some hindsight here, suffice it to say that being two has proven to be a grand thing for Lea:  she is much more self-sufficient (don't even try to help her get dressed in the morning!), capable (she can count to twenty, sings the lyrics of numerous official songs and makes up many of her song lyrics and melodies), and dramatic (despite her incredibly advanced language skills, she knows how to use the well placed whine and shriek in her favor, sadly enough).  She is also a great younger sister and has a wonderful relationship with Hallie and a great pet mom who is always looking out for her cat Zen (and making impassioned pleas for why we need to get a dog sooner rather than later).

We are thrilled to have Lea in our lives and happy to celebrate everything about her and with her, even when we do neglect to blog about it for a good four months!  So happy belated second, not so little one!

Sunday, May 8, 2011

Mothers' Day 2011

Pink flowers (2 kinds, no less)?  Check
Pink paper?  Check.
Pink princess?  Check.
Mommy returning home from three-days away on West Coast?  Check.

Happy Mothers' Day, 2011!  Check, Check!