The feeding clinic

Well the feeding clinic was not exactly what I thought but it was informative. Jonathan loves food in his mouth anything actually he has no sensory issues so that is great however he does not eat enough to gain the weight even if we add a half stick of butter he still would gain no weight and I am not going to give my son butter to live on cause it can't be healthy! So the clinicians advised us to try a feeding pump at night to get most of his calories in then during the day we don't have to push so much. We have tried the feeding pump the last three nights and it works to some degree, I get to go to bed at 9pm and not worry about getting a feeding in him however jonathan is waking up at 330am or 4am (not cool) in a very good mood but I really don't like getting up when its dark. Plus he is not handling the amount of 70ccs an hour he is only wanting about 55ccs an hour so we may have to get something done to check his stomach size according to the clinic because he should be able to tolerate more than that! They think its possible he has a very small stomach and its just not stretching, he also had a swallow study to make sure he is not aspirating and he did great he drank his bottle and ate some applesause and did not aspirate. They were very impressed that he still loves things in his mouth after having an ng for as long as he has. So all that said we are going ot go ahead and scheduale a g tube. This will help him get the calories he needs and he will be able to eat his limited intake without a tube stuck in his throat. We are sad it has to be this way but also know it will help him, he is really sick of the tube. So we will set up the date this monday with his surgeon and go from there.

I will update more when I get time and post some cute pictures of the little man!!