A Gracer Update

With all of the koala bear costume fittings around here, it's been awhile since we've updated you on Grace's health.

First up:  ophthalmology.

She's been posturing her head very obviously recently - tilting her head back and a little to one side.  Her ophthalmologist thinks this is clearly related to her vision, more specifically to the nystagmus that she's had since birth.  Nystagmus is when your eyes move back and forth involuntarily.  It's a little bit weakness in muscles, but it's controlled by the nervous system, so it's not something you can strengthen.  Some kids outgrow it eventually, and some have it all their lives.  For Grace, her nystagmus is at its worst when she looks up with her eyes and when she's turned slightly one way.  Her eyes are completely still when she looks down and the opposite direction.  Her vision is better when that shaking isn't going on, so she's posturing her head to help put her eyes in the position in which they work best.  But that's tiring on her neck muscles and it's not good for her balance especially as she's starting to work on standing activities.

So, the plan is surgery on these toddler blues.

The surgery detaches the eye muscles and reattaches them, tightening certain ones to reset her still point so her best vision will be when she looks straight ahead instead of down.  They've found that just detaching and reattaching the muscles in itself helps lessen the nystagmus.  They will also work to clear both of her tear ducts while they're in there.  As creepy and scary as this surgery sounds, it's apparently the most benign and least complicated eye surgery there is, and has little to no risk associated with it.

Before we schedule the surgery, we will meet with an oculoplastic surgeon to see if they think that fixing her right lower eyelid at the same time makes sense.  Her eyelid has always been a little too big for her eye, resulting in redness, irritation, inefficient tearing and an eye that doesn't completely close when she's sleeping.  The ophthalmologist is guessing they won't do anything to it now, since her face isn't mature yet, but she wants to be sure since we'll already be doing general anesthesia.

Now the better news.

Today she had her cardiology follow up.  While we dread the fasting and sedation routine, we're happy to get a chance to look at her healthy heart.  Today we got more reassurance that her heart is indeed healthy.  And that was before the echocardiogram even took place.  Her pulse ox is still 100, meaning that heart is still delivering delicious, fully oxygenated blood to her little body, which isn't so little anymore.  Her height and weight puts her in the 85th percentile on the Down syndrome charts and just shy of the 50th percentile on the typical charts!  The echo confirmed that her growth is indeed sign of a healthy ticker, and her cardiologist confirmed that she has a "good patch".  She still has two small residual holes between the left and right sides of her heart, but they haven't increased since her surgery.  We go again in 6 months and then will be on the annual visit plan, leaving more time for Mommy and Gracer bonding!