August 19th Childrens Hospital apt.

Went yesterday to see the feeding and swallow clinic and the GI dr.  He saw yesterday the GI dr, the dietician, social worker, phycology worker, and ot therapist.  Two hrs in one small room w/ then coming in and out for two hrs.  What is changing and going to happen after this apt.  He is now being switched formulas from nutra jr to peptamin jr.  and also having more pumped in his gtube so he can gain more and keep up w/ his growth. along w/ starting to pump water in him, b/c he's been fighting dehydration, where he dont drink anything by mouth, and the formula is all he's getting which is a milk product.  They are taking him of zantac and leaving him on his previcid, e.e.s , miralax, to see what will happen.  Suppose to keep a chart of how much he throws up in a day, and call him when things get worse or if he is still throwing up after this change, or still acting in pain.  Otherwise they are going to wait till October and maybe he said do some more tests to see whats going on inside him.  Why he is the way he is.  I don't know if its b/c he will be two then, so maybe w/ the last year worth of growth they can see if anythings changed or not.  I don't know, the dr.s leave you in the dark.  So as right now changing the stuff, and might be going to omaha in october for more tests.  High chance will be going before that for something else.  Have to be calling and talking to nero dr and genetics he may have to go up and see them before oct.  It's been a mess.  Also, his gtube feeding schedule is now 150 ml three times a day w/ 30 ml of water pumped in after each feeding, and then 30ml three more times in the day b/w feedings, plus now 600 ml at night feeding.  And for you who don't know night feedings, we have had back luck w/ I have to get up in the night usually at least once sometimes more because the pump beeps, Its like an IV pump.  So I dont' know the last time I have slept through the night, I feel like I still have a baby that been gettiing up in the night for, even though all my kids sleep for most part during the night.  I pray for him to eat, I pray for him to get better, I pray to be over this mess and have a nights rest. Still don't know the reason for this test. but it sure takes a lot of patience.  Also, forgot to mention he is going to childrens rehab seeing a physiical therapist to try and walk which they say can still be another three months, hips are bowed and anckle problems. Speech and Occupational therapy.  The school also comes out with there people once a week. Plus, have a nurse stop in to check on him, weigh him and make sure not getting liquids in lungs ect... so always busy w/ apt.s for CJ.  Yesterday he did weigh 24 lbs. and 1 oz and his now 32" and 1/4 tall.  He has worked his way up to the 10th percenticle the only problem is thats all w/ the gtube feeding, nothing on own.  So if it wasnt for the gtube, well it really wouldnt be good.