A Lil' Boy's Journey to Live….


As many of you have already figured…we are still at CHOP.  Riley’s discharge is all based upon his tolerating his feeds.  Right now he is getting 24 calories at 15ml/hr.  He needs to get to 27 calorie w/ microlipids at mininum of 45ml/hr.  That is what we came into the hospital with him tolerating.  This, of course, has him almost on a continuous feed all day…having him eating for like 3 1/2 hrs, then breaking for like 1 1/2 hrs.  Idealy we would like his bolis feeds to last maybe a hour, but I don’t know if that we actually happen before discharge.
I also requested to see a speech therapist.  We do have Chris, Riley’s speech therapist at home, but I thought maybe if we saw one here they might have some ideas about getting him to take things orally again.  Of course no one can figure out why he just suddenly decided to stop taking a bottle.  The only thought is that he got sick…literally….of refluxing everytime he had a bottle.  Anyway…we just had Riley sit in a high chair and pretty much just play with some baby food.  He seemed to enjoy himself as long as we didn’t try to force anything to his mouth. 
Im thinking to just focus more on baby food or regular food when we get home.  We’ll let him get his formula through the g tube.  We’ll see.
Ok…well I’ve been actually writing this blog for about an hour.  Our nurse has been in talking with us.  So I need to sum it up. 
The hope is to be discharged on Sunday.  Again this is all depending on his feedings.  So we shall see.
I am going to post some pics that Dennis took yesterday.  Thank you to Dennis and Jackie for bring me Applebee’s!  Also Thank you to Danielle for being her on Wednesday when the whole g tube episode happened, and thank you to my parents for bring Christian up to visit this evening.  We went to McDonald’s and got to have some alone time together.  It was nice.  This whole thing is really effecting Christian so I was glad to have some time with him.
I’ll update again soon…
Finally pics of Riley and Dennis!!
Granny and Riley!!

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