Update on Dylan

Sorry I haven't written in a while.  It has been so crazy with Dylan lately.  His reflux has hit an all time bad.  He wasn't even eating for a while.  He came very close to having a feeding tube put in but luckily he has started eating enough that he doesn't have to have one.  He is so miserable.  He hates the bottle and screams while eating.  The doctor has switched his medicine again so maybe this will work.  On top of all of the eating issues his eyes have started doing some crazy things.  When he looks down his eyes go to far and they twitch.  We went to the eye doctor and he said that he isn't really concerned.  He thinks that it will correct itself over time but it is still very scary to see.  He is also turning one eye in more than it needs to so he has to wear a patch on each eye for two hours a day.  He is so cute and looks like a pirate.  He is taking everything so well and being a little trouper.  I just wish I could handle things as well as he does.  I flip out about everything because I worry so much stuff means other crazy things.  We go back to the neurologist and cardiologist on Wednesday.  I am hoping that the neurologist will be able to put my concerns at ease.  Dylan's heart is doing wonderful.  It looks like he is going to start growing out of his medicine.  That is a wonderful thing but also very scary.  I am so worried that the medicine has just done such a wonderful job controlling it that if he grows out of his med that he will start having episodes.  The only way that we will know is if we do this, so here we go!!!  Everyone say a big prayer that everything goes well with both of the doctors.  That is all that I have right now.  My stomach stays in knots and I constantly worry.  I pray that all of my fears will not be realized.