First off, thank you everyone for your thoughts and prayers for Will, I really appreciate it. We are now back home from DeVos Childrens Hospital. We will be having continued appointments down there for the forseeable future, looks like I will be putting a lot of miles on the car this summer since it is a 7-8 hour drive one way. We go down again in three weeks to see the developmental pediatric neurologist.
So, on to what we have found out so far. Will ended up having a cut up in his intestines, which was causing all of the blood, and causing him a lot of pain. The G.I. doctor said he has had it for quite awhile too. Everything about this situation makes me so mad at the doctors up here that this went on for as long as it did, but I will save that frustrated vent for another day. His swallow study also showed that he has bad reflux and heart burn when he eats. So, over the last five months that we have been dealing with this he has learned that when he eats, he is going to be in pain, so he didn't want to eat.
Now the kicker about all of this, because he was being deprived of much needed calories for so long, his brain wasn't developing properly. (He went from the 50th % to the 5th% within 3 months.) That is why are seeing the developmental neurologist. He is behind on his fine motor skills and will need continued therapy. We also are on a strict regimine to reteach him to eat.
Through this whole process up here I have called every doctor I thought could help, brought him to the pediatrician and emergency room and have gotten nowhere. They kept telling me to give him pear juice and that he had a hemmrohid and that was where the blood was coming from. It makes me want to scream. We were at DeVos for three days and got so much further towards getting him better. Oh, and FYI, he does not have a hemmrohid.