April 19, 2005:  We're home now! :)  It is so great to be here (though the staff at the hospital are nice, it's so much easier to be in your own environment.  She is on the same medications, plus Zantac, to control the stomach acid as her g-tube site heals.  The feedings are easier, and for awhile, we can do a pump feed at night so we don't have to wake up as often (only every 4 hours!) :)  We have check-up appointments in a couple of weeks, and in 3 weeks, we'll go back to the surgeon's to get the tube taken out, and a "button" put in (so it will be flush with the skin, and not as likely to catch on anything)  In the meantime, there is no "tummy time" for Therea, and she'll have to take it a little easier as she heals.  We'll have to be careful not to let her get her hands on her tube and yank it out, but she is in good spirits, and so are we!

 

April 20, 2005:  Theresa was well enough to have her occupational therapy today.  She usually enjoys it, but today was a little out of sorts in the beginning, but not too upset.  Our goal is to get her to drink from a bottle.  She used to suck and swallow from the bottle without too much difficulty, but as soon as she did, she would throw it up, and it has made her wary of having anything liquid in her mouth.  So, now we are having to progress slowly and introduce a small amount at a time until she realizes that she won't throw it up immediately.  We are dipping her pacifier in it, letter her try and suck a little from a bottle, etc.  (all recommended by the therapist, Joyce)  Now that she is actually "hungry" before her next feeding, she should have more motivation to try and eat by mouth.  For the near future, she won't take in enough nutrition to do without the g-tube, but we are hoping to beat the estimated 2-3 year average for having one in.

We are also trying to fine tune her nutritional intake.  Before, she was on so little volume and none to her stomach, and now we have increased it so much that she is very uncomfortable after being fed for a few minutes (imagine gorging quickly on Thanksgiving dinner each meal after dieting for months prior.)  Sometimes it goes down without a problem, other times we are struggling a lot. 

When she feels good, she starts to do so much more than she did with her nasal tube.  Even the therapist commented on how well she was trying to move her head from side to side and look around (before, pulling the tube in her nose gagged her)  She also coos, "talks" and has a loud belly laugh when she is really happy.  Theresa made some noises before (mostly fussy ones), but never really attempted to mimic us or talk as much as she is now!  It is like we have a new baby at the house, but this one acts more her chronological age.  Yes, she still has tight extremity muscles, and needs help with oral/motor skills and other therapies, but she is improving.