People often think I’m being negative when I don’t get excited about good things going on in our lives.. It’s like I’m constantly waiting for the next shoe to drop. If you watched our video about Raedyn drinking from a bottle you’ll understand.. i was SO excited, I started thinking of all the things. What if we start weaning him off the pump and offer bottles during the day? What if he we can get his tube out? What if he starts eating everything by mouth? On the first day I noticed by evening time Raedyn’s stomach had nearly doubled in size, it was rock hard and he was pretty uncomfortable. I decided to vent his G-tube and unfortunately all of the food/drink he had in his belly came right out. The next day, we tried again. And by afternoon he was crying uncontrollably. His stomach was huge, and he was so uncomfortable. Venting him wasn’t helping and he hasn’t made a dirty diaper in 2 days 😥 I know it’s probably an easier fix, we need to adjust his motility meds and see about his feeding schedule. But dang it’s so hard, because we just wanted to celebrate his milestone and now we cannot even do that because he is in pain. Raedyn was born with a mal-rotation so his digestive system is a lot different than ours. On top of that Raedyn has really bad Reflux which is why he is fed into his intestines instead of his stomach. Both of those combined, along with very very very slow motility (how fast food moves through the digestive system) his stomach bloats when the food is waiting to go down, then he will get constipated. I called to get into GI and they said we can’t be seen until May 😭#michellepfeiffer #life #neuroblastoma #motherson - @risewithhayz