4 Weeks to go!

So far he still has 1 tiny spasm a day!  So I'd say he is tolerating the weening process just fine.  As far as his heart drops...even after the monitor was adjusted he is still having an occasional drop.  Maybe twice a week.  We will talk to the Developmental team about this at the upcoming Riley visit on Monday.  We will also discuss the necessity of one of his meds.  It was given to reduce his saliva production because he was retching and not swallowing the saliva in his mouth...we felt that this would reduce the urge to retch and make him more comfortable.  He currently takes 5 different meds...3 of which (possibly 4) he will go off once we finish ACTH.  Also to be discussed...Nicolas' formula.  He was put on 27 calorie food that had less water but still met the regular daily caloric intake.  We reduced the amount of fluids because AGAIN he was retching and not tolerating feedings at all.  We felt the overproduction of saliva and large volume of formula were related some how.  Since ACTH he has not retched once and we now have him on 20-calorie food (which is the normal amount) and he is still taking in the same amount of calories.  Now that he is tolerating his feedings we would like to start weaning him off the night drip feed.  The night drip feed starts at 9pm and finishes at 7:30am...and accounts for 14ounces a day.  Getting him off the pump means more feeds by day. Once we get the OK from the developmental team we will start weaning.  All feeds are still via feeding tube.  As far as Oral feeds go...we cannot begin that until he has another swallow study and passes...which we hope to do once off ACTH.  Even though oral feeds aren't possible at this time, the speech therapist suggested today that we start putting formula on the pacifier so that he can develop and enjoy the sense of taste.  

I can't believe he is turning 10...It doesn't see possible!

He may be wearing deodorant but he is still my baby!

In celebration of his 10th birthday, this Friday Jake and I are taking Garrett and 3 of his friends to an indoor water park in Shipshewana!  Oh pray for us! HA!  His birthday isn't until November 2nd so he thinks he is having a BIRTH WEEK!!!  Honestly, I don't know where he gets it!      

Enjoy your weekend!

Felisa