How Old is Hallie?

Lilypie Fifth Birthday tickers

How Old is Lea?

Lilypie Second Birthday tickers

Saturday, May 21, 2011


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.


Robin Elizabeth said...

good luck, I will be thinking positive thoughts for Hallie on Wed

Anne said...

Good for Hallie! I hope all goes well with Lea and with Hallie's surgery this week.

Eliza still sees her ophthalmologist each year (I get to go twice yearly). This year before dilating her pupils Dr. Merkur, on his initial exam, thought Eliza would need glasses. While waiting for them to dilate she gleefully picked out her frames since she wants to wear glasses just like me! Upon finding that she did not need glasses she was beyond distraught! Thew herself on Dr. Merkur's couch wailing about the unfairness of this decision and life in general. So we went out and bought several cute sunglasses instead.

Having gotten my new prescription and discovering the cost of the lenses ($400), I am now a huge fan of Progressive lenses with clip on sun shades... $49.00!