Ethan and I drove up to Altoona, PA to meet up with Mark, Emma and Evan at Obie & Ray's house. What a beautiful weekend! Sunny and 75, need I say more? We hung around Obie & Ray's house on Saturday and went to an old fashioned amusement park on Sunday where we rode a wooden rollercoaster built in 1902. We had a great time.
The one odd thing about the weekend was Ethan's feeding. Ethan walked into Obie & Ray's house, sat right down at the table and ATE ALL WEEKEND LONG. He didn't eat any new foods, but he scarfed down more of his 'safe' foods than we had ever seen. I think he was making up for his lack of eating the past two weeks at the program.
It was back to reality today. The doctors at the feeding program took all the pressure off Ethan since Friday. He was able to eat his 'safe' foods, have me in the feeding room with him, and watch Thomas videos (his reward) while he ate. Today we phased me out of the room and phased the feeder and recorder back into the room. Since he seems to be relaxing, we will soon start putting some pressure back on for the rewards and start on some new foods.
He is still not drinking much. We had to cancel Wednesday's cardio consult, because his KKI doctor wants him to see the director of pediatric cardio surgery at Johns Hopkins instead of the doctor we had scheduled. We are also waiting for the scheduling of the Gtube, or PEG, as they call it. I think the GI doc here wants to do a scope and look at his eppiglotis and vocal chords at the same time. (Please excuse my spelling, I seem to spell eppiglottis differently every time!)
That's all for now! We miss you all!
Molly & Ethan