The following is what I wrote on Facebook after the appointment with her feeding doctors:
I met with Elizabeth's feeding clinic doctors today. I guess first off, at least I feel the least bit better that at least these doctors are genuinely concerned & looking for more answers. That being said, Elizabeth has an abdominal ultrasound scheduled for Monday @ 10:30 am. This is to see if anything could be wrong with her gallbladder or other abdominal areas. They are also ordering a video swallow study to see if she can handle thin liquids & to hopefully get her off the pudding milk. They are worried that all the fat content in all her foods maybe causing problems with her tummy. They are also worried that maybe the milk content of her foods may be a factor in her tummy problems. She had issues with breaking down the proteins in milk when she was an infant. So maybe she is still having some small issues there. They are just trying to truly rule everything out.
They also said ABSOLUTELY NO on putting her back on Reglan. Which I am so happy about, as I didn't want to put her back on that, but the surgeon was insisting on it. Instead they have upped her dose of Nuerontin & also put her on a decent size dose of Ery Pred, which is an antibiotic but given daily on a regular basis helps the stomach contract & empty. So we will begin the med change tomorrow.
Onto the bad news....Based on the behavior problems I have been having with Elizabeth, they have decided to put Elizabeth on the waiting list to go back into the intensive feeding program. In other words they believe we need to do the program again, 5 days a week, 8 hours a day, AGAIN!! Especially to get her to eat textured foods. I'm rly having a problem with this. We already did 10 weeks in the program!! We are a year out almost from when we went through it before & we should be further along. The doctors didn't like that the behaviors are coming back & worse now!! I'm very frustrated, sad, and disappointed in myself!! I hate that E is going through this. I dislike that we need to do 10 more weeks of intensive therapy!! The waiting list is 9 to 12 months long, so until then we just need to continue to do what we are w/ some adjustments. And if need be, we will fall back on the feeding tube. It's just a lot to take in.
I know some of you are confused because I had previously mentioned that Elizabeth has fed herself. She can feed herself, but won't and if we allow her to, she won't eat anything at all. That is why we still have to physically feed her as if she were a baby. Her drs at the feeding clinic have said that her feeding herself will be the last piece to fall into place when she is totally comfortable with the whole process and eating. So yes, we feed her like a baby. We even have to give her her drinks through a bottle we squeeze into her mouth. I know it sounds so strange, but at least we are getting some food into her mouth. One of these days I will take a video of feeding her and post it so you can all understand a little more.
So for now, I'm going to sit back, let this all settle in & try to accept it all. Wish me luck!
No comments:
Post a Comment