Super Carter

This is our super hero, Carter.  He is the bravest 3 1/2 year old that we know.  He has the biggest personality and lights up a room when he enters it, despite having so many medical issues.  When Carter was 2 weeks old we started to realize something was wrong.  He always seemed to have difficulty breathing.  At 2 months old he had a cold and stopped breathing at home.  At 8 months old after many tests we learned that he was "drowning" in his formula.  He was not swallowing properly and small amounts of his formula were going into his lungs.  He was aspirating.  A feeding tube was inserted into his nose and down to his stomach to feed him.  He was no longer allowed to drink from a bottle.  We were told this would be temporary.  It was not.  Since then life has been a roller coaster of ups and downs.  Carter has 6 specialists and a list of medical issues.  He gets between 10 and 20 medication doses a day.  He is sick almost all the time with respiratory issues.  He has had aspiration pneumonia on and off his whole life.  He has been under anesthesia 7 times and admitted to the hospital sick 7 other times.  He has had an enormous amount of tests and procedures done to him.   Last year Carter had a feeding tube surgically implanted into his stomach and gets the majority of his nutrition thru the tube.  All liquids are given thru the tube since we still do not know why he can not swallow properly.  He could eat solid food by mouth but for the most part choices not to because of severe food adversions.  Five times a day liquids are given to him thru the tube in his stomach.  He is medically fragile and needs to be watched carefully.  His muscles are weak and his muscle biopsy is abnormal.   We still do not have a lot of answers and do not know if what he has is progressive.   We have exhausted all of our resources.  Carter's medical bills have already exceed $20,000.  Our plan is to take him in the spring to Cincinnati Children's Hospital to the airodigestive clinic.  Carter is now starting to see that he is different then his brother and most kids.  He dreams of being able to drink from a cup like his brother and of not being in and out of hospitals all the time.  Please help us find answers for Carter.