Gracer Update

Grace saw her pediatrician today, who we LOVE, for her post-op check-in.  As we had mentioned, we had a list (typed, with bullets - sad and true) of different topics to go over with her.  She kept her best "these parents aren't wackadoos" face on and I'm sure used us as an excellent teaching example of overreactive first-time parents for her resident in training after we left.  And by us, I mean me.  Grace, however, doesn't have the poker face that Dr. Zbar does and clearly displayed her concern over the insanity she is dealing with daily.  

Grace clocked in at 10 pounds, 7 ounces and 24 inches long, which puts her between the 25th and 50th percentile for height and between the 5th and 25th percentile for weight on the Down Syndrome growth chart.  It puts her in the 10th percentile for height and not quite on the chart for weight on the typical growth chart.  Her weight gain since leaving the hospital is good but could be better so we will fortify more of her meals to help her pack on the calories.  When Dr. Zbar suggested this, Grace tried to explain that she is a city girl and thin is in, plus it's New York Fashion Week, but the doc would have none of it.  

Dr. Zbar didn't see any teeth on the horizon, so it must be that bubbling drool is the Fall 2011 lipstick color.  Grace rolled from right to left throughout the appointment and her doc was impressed with how active she is.  We will get more info on how her heart is handling the decrease in meds and the city pace next week when we follow up with Dr. Geiger, her local cardiologist.  There's some concern that she's sweating more with her feeds, but then again the city humidity may explain that. 

Our big concern were the new spasms that we had seen yesterday.  On the heels of the facial tic that we saw in the hospital, Grace had a series of spastic movements (40-50 within 15 minutes) yesterday morning that looked similar, once surfing the net, to Infantile Spasms - a form of epilepsy.  Freaked out does not begin to describe our mental state yesterday.  We showed the video to Dr. Zbar, who said she's not overly concerned, especially because they did not happen today, but that we should see a neurologist to rule out anything serious.  She suggested we put away the computers and assume she has some sort of benign movements that are common in babies rather than a rare epileptic disorder.  Sound advice, sane one, sound advice indeed.

So the next month will be busy doing the -ology shuffle with cardiology, neurology, ENT and ophthalmology in addition to resuming our early intervention.  We're looking forward to more appointments where the words "I'm not overly concerned" are used.