Since the second week of December, Jayson has majorly regressed in oral feeds. He's regressed in quantity, in quality, and has completely stopped feeding himself. In October he finally learned to bring food to his mouth! He was feeding himself crackers, cereal and little baby puffs every day. He continued to do it after surgery, but then stopped abruptly. He went from 16 oz of oral feeds a day to about 2-4 oz. He refused to eat any solids whatsoever, and all of his purees had to be very finely pureed with no pieces of solids or else he'd spit it out and melt down. It has been a challenge. He lost 2 1/2 lbs, and we had to add to his tube feedings which was really discouraging. I have been trying to be patient and give Jayson time. He has had a very rough few weeks. His feeding therapist said that this happens with some kids who have major surgeries, particularly brain or distraction surgeries. Not only does J's head and brain feel different, but when you move the skull you're moving parts of the face as well. It would be strange if it didn't affect his eating. I just kept hoping and praying he would bounce back.
The fear is real. Jayson is still undiagnosed. Many genetic syndromes cause regression in many areas of development. Any time he slides back, I hold my breath. It makes me fear the worst that maybe the regression is permanent. Maybe he won't bounce back. Even though we have a very good explanation for why Jayson regressed in eating, we also have a very good reason why it might be permanent. His surgery involved the brain. There were changes in his head and in the position of his brain. These changes might be enough to affect him permanently. I have been scared.
Well today, Jayson gave us a miracle. I pushed him hard today during his lunch feeding. I feared I pushed him too hard. I forced him to eat a puff. I held him down, forced his mouth open, shoved it in, and covered his mouth with my finger to keep him from spitting it out. It felt so wrong, but I just had to try it. Those little puffs were his very most favorite thing. I thought that maybe if I made him eat it that he'd remember he liked it. That he wouldn't be scared to mash and swallow it once he could see and remember that he could. I feared I was wrong when it resulted in him crying so hard he was shaking. But then, the miracle happened. He started grabbing for the puffs. He allowed me to keep feeding him yogurt. Despite the fact I crossed a line with him and pushed him to the point of meltdown mode, he pulled it back together and kept eating. I knew that was a good sign. So I pushed the limit again. I put puffs in his yogurt. I've done this many times the past 2 months, and he always rejected it and melted down. Not this time. This time he smiled and gave me his proud face look as he mashed it and swallowed. I was THRILLED!! I was in tears. He amazes me everyday.
He kept playing with the puffs and picking them up, I could tell he remembered how much he liked them, so I pushed the limit and picked up another one and brought it to his mouth. He opened, took it in with his tongue, and ATE IT!!! He looked so very proud of himself. It was amazing. He ate another, and another. Again, I was in tears. Another miracle.
Be he wasn't done.
Just when I was ready to wrap up one of our most successful feeding sessions, EVER, Jayson did this and I caught it on camera:
He did it!!!!!! He brought a puff to his own mouth and ate it!!!! We were back on track! We were back in the game! He showed me that he may have hard times, and he might regress, but he will NEVER stop trying. He will never stop amazing me.
You'd think by now that I would
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