Honeymoon is Over

This weekend was both wonderful and difficult. As for wonderful, Ben played in leaves and "helped" us rake them, thus conquering his fear of leaves. He and "Papa" have been doing leaf therapy at night. They go out and walk, jump, and crunch in the leaves. Papa is in the family we are staying with, and Ben absolutely loves him. Ben also ate well for me. I had to feed him twice a day by mouth, and I worked very diligently at doing this as I had been instructed. I learned that bananas had to be thinned down some or he would gag to death on them. He learned to enjoy pureed peaches a bit more. For all of my efforts, I was rewarded with Ben's 4 oz. weight gain. ;o)
As for the difficult part of the weekend, I was the only one that could feed Ben. Since I am the only one trained in the protocol, I was the only that could feed him. This has worn me down. It is a good thing to be able to hand him off once in a while. Getting everything set up to feed him, then getting mentally prepared for the feeding takes a huge amount of energy. I was never sure if I would succeed or fail in my efforts. Thankfully he did well eating, and other than feeling blue and homesick, I do feel like I was a success. Also, on Sunday, I helped in the children's nursery at church. At snack time, all the kids (ages 18 mo to 3 yrs) sat down at the table and eagerly ate their snacks. I gave Ben 1 Gerber food puff and he mashed it into pieces, then threw it down. The 2 raisins he was given were both thrown. His one oz. of water was dumped out onto the table. I usually don't let that scene get to me, but it killed me on Sunday. I felt so discouraged. Is this kid ever going to want to sit down and snack, or am I always going to have to initiate, set up, and jump through hoops to get him to put one bite into his mouth? I just want him to be normal. Sometimes I sit back and look at my situation, and I marvel at how something as natural as eating, could ever be so unnatural to him.

Today, he has a cold. He has been really gaggy. He has thrown up during a couple of his feedings. Earlier today, he got into a coughing fit and threw up everything from his most recent feeding. On a good note, if he can keep his food down, all day time tube feedings have been cut, and the overnight one is reduced. Happiness is not tube feeding! So, I guess the honeymoon is over, and I am now on an amazing rollercoaster ride. I will take the good with the bad, and keep hoping for better days and for a child that will eat. Slowly, I am on my way there....