Mya did great for her first day at therapy with Ben. It was actually a lot harder than what I anticipated it would be. Don't get me wrong, Mya left each feeding smiling and playing and her happy go lucky self. But it was an exhausting day for Mya and the two of us. We did three feedings with Ben today and that was plenty! Mya was wore out! We are still adjusting to the time change and were up again at 4:00 a.m. this morning California time!
Mya's feedings each got better as the day went on, but there was a lot of crying, gagging, vomiting, and refusing. I am so happy that we are here, but wish we would have done this sooner. The older she gets the harder this is going to be. I think Matt and I are coming to terms that Mya's feeding disorder is actually worse than what we thought. She only ate 360 calories of food today and in reality needs well over 1000. She spit a lot of the food out so one bite would take him 5-10 times to try to get her to swallow. She would pack the food in her cheeks or simply just sit there with the food in her mouth not wanting to swallow. Ben is very positive with her and does not use force what so ever. We have a long way to go but for Day 1 she did great!
By the last feed she was actually opening her mouth for the spoon (in not to good of a mood about it but was opening her mouth). At this point until she progresses Ben does the feedings with Mya and Matt & I are in a completely separate room watching everything on a TV. Although it is hard to watch I know that we are doing the right thing.
Ben is a very down to earth kind of guy and as a father of 3 he knows what it is like to have your little baby go through tough times! We talked a lot today about her history and our health care here in the U.S. Basically these parents are sent home with a "quick fix" feeding tube and end up with a complete mess when their children get hooked on them and develop oral aversions.
Overall day 1 was a success but I have to admit I hope the ride gets easier! Thank goodness Matt is here with me!!! Keep praying for Mya!!! I know she can do this!!!