In December of 2009, we visited The Institute for the very first time. On our first break, we cornered one of the doctors and briefly explained Aviana's accident and how she had just failed her swallow study. We asked him how we should proceed? He quite simply said, "you feed her. If she doesn't use it, she'll lose it." He told us to start off slow and build up. And so we did, all the way until we got her feeding tube out 2 years ago this August.
We started to chop her food up more coarsely, to see if she could handle it. At first she was getting better and better. But then slowly, she began to regress, as with all of her therapy. The little, tiny bit she had gained, she had lost. She always got tired and stopped. As with feeding, she did the same. At the time, we were with her amazing doctor at Kaiser. He was working with us all the way through: with her liver, her feeding, with everything. He was talking with the nutritionist, the feeding specialists, consulting with many in an effort to help us.
At this point, we had also very much so seen the writing on the wall, and realized that Aviana was not making any strides on the program she was on and had stopped. We had very much so accepted our reality, and even enrolled her in school. We were making changes in that general direction, both mentally and physically. But prior to the accident, food was Aviana's number one thing in life. Anyone who knew her, knew the girl loved to eat, and eat, and eat. She loved everything and anything, just give it to her! So food was the one thing we wanted to preserve. In a world full of loss, we wanted for her to be able to taste her food, if we could.
As you all know though, we had problems feeding Aviana. She didn't like to open her mouth all the time, which poses a problem for eating, right!
Her best doctor was bound and determined to help us. He explained how this amazing feeding therapist (outside of Kaiser) would come to our house and perform all these assessments. They would watch me feed her, they would analyze over the sessions, etc. They would come up with a plan. Together, we would figure this out, because he and I agreed, it had nothing to do with her brain injury and everything to do with her behavior. She was exercising her Meekie muscle of control. Everything was going to be put into motion. I was so excited!
Well, along comes the botched liver biopsy, and guess who gets sold down the river...exceptional feeding program and all! US! He pawned us off to a Kaiser pediatric psychologist?!? In email form and all. I was furious. I shot back an email, and he made up some lame excuse. Stick a fork in me, I was d-o-n-e!
I later talked to the psychologist and very respectfully asked if he'd ever worked with a brain injured child like Aviana before, but furthermore - one with these sorts of feeding issues. I further explained that I didn't want to waste his time, or mine. He turned out to be one of the most amazing people I've ever talked to at Kaiser. He told me he had looked through our whole file before talking to me. He knew everything and had first apologized for our accident and all we had been through. He then asked how everyone was doing. He went on to say he had never seen parents go to such extremes for their child. He heard me out about all that was promised in regard to the feeding program, and then after the failed liver biopsy how I was automatically transferred to him. He said how sorry he was, and how he understood exactly what happened, "we were promised a Mercedes, and drove off in a Yugo!" He then said with all our knowledge, and all we had been through in the feeding department thus far, he did not believe he could be of any help to us and didn't want to waste any of my time.
I had a nice, long conversation with him...it was more like talking to a friend than anyone else. I so appreciated his compassion and honesty.
After I realized Kaiser would be of no service to us, I was at a loss. I soon turned to you for help in the feeding area. I tried everything you all told me. Some worked for a while, but as with everything...Aviana grows tired of the routine.
I have unintentionally gone on too long...I'll be back with Part 2 of this story : )