Today, I'm Going To Take A Day.
I woke up today already knowing that it would be an emotional day. Myles appointments with gastroenterology are always mentally taxing and my emotions run wild. WILD. I was so hopeful for good news today. Myles hasn't used his feeding tube in months. He's been on a 6 month oral only eating trial and it's done this month. I was hoping to hear the doctor be happy to tell me that we can now schedule to have Myles' tube out. The end of the feeding tube journey! We were hopeful halfway through this trial even though his weight gain hadn't been significant, but he had shown growth in height. The GI doc was happy with that growth then. But that was then. He did not meet the requirements the doctors need to have his tube removed. We have to go back to supplementing calories with tube feeds. Unfortunately, he has not grown at all in the last half of his trial. Weight or height. Nothing. The good news is, he is orally eating enough to maintain his weight and is