Friday, July 23, 2010

An Appointment a Day Keeps the Doctor Away?

Oh wait.  That doesn't work.  But we tried it this week.

Monday: First visit to WAVES.  See two posts ago for more details.  Definitely a fun, fun appointment.

Tuesday: Endocrinology.  Regularly scheduled, also turned into hospital follow up.  See detailed description below.

Wednesday: Physical therapy with Ms. Ashley at 100 Oaks.  I may have said this before, but Ms. Ashley is wonderful, though she is definitely no Ms. Jane, but the facility is a magical playland.  I want to have my birthday party there.  Zip line, foam pit kind of thing, a track around the room for riding toys, a mini basketball court, and fancy stairs with - how to explain this? - colored water in the walking surface that moves around when you step (make any sense?).  Becca had a hard time focusing on the task at hand (whatever the task was at the moment), but, frankly, so did I.  So fun.  Now that Itty is walking, we are working on stooping to pick up a toy and learning to use our feet (to kick, etc.).  It involves putting stickers on the tops of her shoes and kicking beach balls.  PT is fun.  (And this makes me feel better about spending Becca's gymnastics money on repairing the leaking water main.  Homeownership is not fun these days.)

[Just for the record, I am ignoring my daughter, who is standing at the back door (I am on the deck) screaming, "Mama! Mama!  Mama!  Mama!"  I wonder how long it will take until it bothers John, and he rescues her.  (He is "primary parenting" right now, as I like to call it.  Thank God for Fridays.)]

Thursday:  Occupational therapy evaluation.  Good eval; still looking at weekly therapy whenever a spot opens up.  Fine motor still looks good, but we'll work on sensory issues and some related feeding issues.  (OT is the primary discipline for working with sensory integration, the kind of therapy required for kids with sensory processing disorder, or "SPD.")  I'm still crossing my fingers that Karla will miraculously decide to transfer over to Vandy, but for now, I'm waiting for a call.  For sanity's sake, I might hold out for a slot that piggybacks on PT.  Therapy exhaustion is a very real issue, and not just for the kids.  There's only so much back and forth and home therapy exercises you can do before you all burn-out.  But hopefully that will open up soon.

Friday:  Feeding therapy, first session.  Again, no Ms. Caroline or Ms. Roxi, but I think Melissa will work well with Becca.  She did convince her to lick a piece of peach drenched in syrup, so that was progress.  We'll do 20 sessions once a week, which is down from the 2 per week we were doing, due to availability - as in, we are only able to get into therapy because being inpatient for so long (and having a fabulous inpatient therapist) bumped us up - not even kidding - 40 spots on the waiting list.  Wow.  Again, I say: pediatric feeding therapists, get thee to Nashville!  We need you (and your GI buddies).

Okay, now back to endocrine.  The good news is that we don't have to test her blood sugar anymore, unless we see something suspicious.  But the bulk of the appointment was spent talking about growth (our regularly scheduled programming, right?).  Now that she is two, beginning therapy with growth hormone is an option.  Once we begin therapy, we will continue it until her growth plates close around age 14.  (Yes, that's 12 years.)  After reading Becca's "bone age test," which is just an x-ray of her wrist, looking at whether her growth plates are closing more or less quickly than average (they aren't), Dr. Lomenick's best (highly) educated guess is that her full adult height, without the help of growth hormone therapy, is around 4 feet, 7 inches.  Yikes.  (Note to anyone reading who may be 4'7" or shorter: I am not saying there is anything wrong with being of very small stature.  But I would like to spare Becca some challenges in life, since she's faced more than just about any of the rest of us in her 2+ years.  My guess is that you would agree.  And I'd love to her your input either way.)

To clarify: Becca's body does produce growth hormone effectively, but it likely doesn't use it efficiently, and even if it did, she had such a disadvantage at birth (you know, being 9.5 inches, stretched out head-toe), that she needs extra hormone to help her reach a more manageable adult height (hopefully somewhere around 5' - 5' 2").

John and I have decided that, assuming our insurance will cover it (according to the docs, they have never had a company deny it when it is specifically for kids who were small for gestational age at birth - but I'll believe it when I see it!), we are going to begin therapy right away.  We'll have to give her daily subcutaneous injections.  (Subcutaneous means "under the skin;" they aren't injected directly into a muscle, like many vaccines are).  "SubQ" injections, like the ones I gave myself while I was pregnant, are less painful, though they are still no picnic.

We could have decided to wait a couple of years to begin so that Becca would be better able to understand why we were giving her all of these shots, but there are several reasons we want to go ahead and get the show on the road.  The most important is that the longer you give the shots, they more effect they have.  (Makes sense, right?)  If we're going to do this thing, let's do it.  Kind of how we approach much of life.  This way we'll also see faster results (again, makes sense).  After seeing her at school on Monday, so so so so much smaller than her peers, we agreed that it would be good to at least help her a little before kindergarten.  Dr. Lomenick thinks that if we start now, she might at least be near the bottom of the growth curve by the time she is 5 or 6.  (By the way, she is still hanging out 6 inches below the 3rd percentile.  I'm serious when I say she's not on the charts.)  And finally, if we start now, she'll be used to getting the shots.  She won't like them, I'm sure, but she is a tough kid who gets accustomed to doing difficult things, so I think it's wise to go ahead and use that adaptability to her advantage, rather than waiting until she is a more inflexible 4 or 5 year old (when changes or unpleasant experiences tend to be more difficult to introduce).

As Dr. Lomenick said, though, the question was really about when to begin treatment...because the question of whether or not to treat her, when we have a therapy that is safe and effective, and at least attempting to help her grow taller than 4' 7", is really a "no-brainer."  (Seriously, his words.  Very rarely are doctors so forward in sharing their opinions on such matters.)  And he's right.  I hate the idea of giving her shots, but I know we can do it, and when you start thinking about independent living at 4'7", it gets difficult.  Not impossible, of course, and I have no doubt that Becca could manage just fine, thank you, but that's a lot of adapting.  For example, imagine someone the height of an average 9 1/2-year-old girl (pre-growth spurt) trying to see over the steering wheel when driving.  That's tough.  So we're going for it.  We should hear back from their office with clearance from insurance by next Wednesday.  And we had better have clearance from insurance...because growth hormones are very expensive, especially 12 years' worth.

Next week, miracle of miracles (okay, not really - it was just a lot of rescheduling on my part), we have no appointments, because we will (probably) be going to camp!  John is definitely going to lead a week at Aldersgate Camp (his old church camp and his favorite place in the world), and I'm hoping that Becca and I will get to join him for a few days, God willing and the creek (aka the bog from the leaking water main) don't rise - and the plumbers cooperate.

That's all well and good, but I'm pretty sure 90% of you are here for the pictures.  How about this gem for today, then?
Mommy and Becca, mid-silliness


  1. I love you so freaking much. That picture is 112 kinds of precious.

  2. love the picture! And I continue to be so so interested in your story as it seems to mirror ours in so many ways (a year behind you all and a few pounds bigger though!). I will be very interested to see how the growth hormone therapy goes for you all, as we are headed there too it appears. If Charlie has this "syndrome" they think he may have, his adult height (if untreated) could be only 4foot 9". It does seem cruel to allow that to happen when there is a way to help them be more "normal."

  3. My cousin Courtney had to take growth hormone shots all through childhood. She is now 5 foot 1 I believe. So they worked well for her and became part of her everyday routine. I think she stopped toward middle school. I'll have to see about that.