Feeding Update for Eric

His appointment at the feeding clinic was last Thursday. I've been nervous about this appointment and dreading it for a while. He's gone backwards, and has lost a lot of the progress he's made. In his head the only thing that is food is his cheerios, and drink is his pediasure/CIB or fruit juice in his "orange cup" (that's what he calls it, it's that old baby nuby cup). He is so rigid and set in his ways, and at this age it's hard to change. For a while he was doing good when his therapists were here, but would not do anything for me. Now it's a fight even with the therapists, the ones that are still doing this. Some of them are getting discouraged. My ability to work with him has been limited due to having surgery, then other health issues to deal with and also having to work with his 2 brothers that have special needs also. My follow through needs to improve no matter. I feel guilty about this, but I can't change it now. We must move forward.

The appointment started of with some good news, he has gained 6 pounds since his last visit. That's awesome, he needed that. He still won't allow them to get his height. There was a lady who hasn't worked with Eric before doing that and I kept trying to tell her he didn't like that thing coming down on his head and won't let her do it. She finally talked to the team and was told no height needed and we were brought to a room. The psychologist came in quietly while I was talking to the nutritionist. Then we told Dr. F what was going on. She told me that she had to talk to her team of psychologists because she has nothing to suggest at this point. She is going to talk to her team about putting together a plan that can be done inpatient with him, but it's unknown if this can be fixed in 2 weeks. I highly doubt it. I was told otherwise that he could be sent out of state if they can't do anything for him. Problem with that is WI medicaid most likely won't cover that. Never mind how hard either of these would be on him, and the rest of the family. Care for the other kids, I wouldn't know where to begin. So doing this at home is really much more desired, but there are limits. You can't just take away what he will eat and drink because he will not give in, he will get sick. Inpatient treatment is a hellish way of doing this. It's so discouraging that they are just throwing their hands up in the air.

Here's the plan for now. We are going to work really hard on him eating his cheerios with a spoon. Once he has that down we are going to start adding very small amounts of milk, and work with that until he can tolerate it. I've also bought other flavors of cheerios that I will give him to get used to new tastes. A wonderful lady I met on Twitter through The Coffee Klatch, and am also talking to on Facebook now suggested that I try one food, putting the food on her plate, touching the food, then bringing it to her mouth, and eventually taking a bite. This could take weeks for one food. I am starting with a saltine cracker. So far not going too good but keeping on. This child has also had a wonderful OT working with her, helping her make so much progress with eating. Eric has OT at school, but it's no more than an hour a week (Andy's is 1 hour a MONTH!) and they still have to work on writing and school related stuff. His school speech therapist does what she can. The ABA therapists try, but they and the psych doctors at the clinic are all about behavioral training. Yes, he needs that but I think sensory issues are just as much of a problem but not being addressed. Very limited time and money don't help. So we do what we can.

God I would give anything for these boys to eat. It comes naturally to almost everyone, why can't it for them? This is so frustrating. It's been hard for me to find the words to get this out. There are so few people that deal with this type of thing and can even begin to understand this. I feel better now that I finally have. From here, we can hope something works for Eric.