Same old same old

Like the last post, Kiera is basically doing the same.  She is getting over a cold which has made her mucus/saliva swallowing even tougher because it is stickier and can't make it's way down the esophagus.  The phlegm gets caught in her esophagus for two reasons:  (1) we believe her esophagus is closing up again and she will need another dilatation (another surgery) and (2) the site of her esophageal repair has dismotility and she needs gravity for food/saliva/mucus to make its way to the stomach.

Kiera is still not interested in eating or drinking but that is not stopping us from trying.  As funny as it may sound, we hope that her esophagus is closed because that would give her a real physical reason for not eating and that her food refusal is not yet (or less of a) mental problem.  So for now, we offer food, we let her taste, but we never force large amounts of food into her mouth.  We are also continuing with the 24-h g-tube feeding with several bolus feeds throughout the day.  [Recall that her bolus feeds are about 20 ml of baby food mixed with cornstarch and water that we push into her g-tube using a syringe.]

Kiera's height and weight and head circumference have climbed and are now all in the average range.  This of course depends on who is measuring them but we always believe the best numbers.  She is doing so well growth wise that it surprises some of her doctors.  Although Kiera is falling behind on some of her developmental milestones, we firmly believe that she will catch up.  She is consistently rolling from her tummy or from the crawling position onto her back.  [She hates tummy time, like most infants do until a certain age.]  She is also consistently waving "hello" or "bye-bye".

Now that Kiera is doing better, we can spend a lot more quality time with Piper and have enrolled her in all sorts of fun things.  Music lessons, ballet, and preschool give her a schedule that makes us all a new kind of busy.  Piper is having so much fun!  After the first day of music lessons last week, she was so excited about doing homework that we had to practice everyday, sometimes twice a day.  After the first day of preschool (see picture on right:  Piper and her friend outside of the classroom), all she could talk about was pirates, treasure boxes, and the fact that there was a play structure outside.  I'm sure that after the first ballet class, which begins in a few weeks, she will talk nonstop about wanting to wear a tutu (which they don't do) and Ms. Merrilee.  Her zest for life is truly awesome!