As you all know, Adam does not eat. I mean, really- no food. We have had operations, feeding specialists, been to both clinics in our state, see a GI every 8 weeks, and a weekly feeding therapist. We have tried: skipping meals, only favorable foods, tv, sticker charts, punishment, rewards, small portions, clapping, and ignoring. We eat at the same time, all together, he sits in the same seat.
Basically- Here is a typical dinner routine.
It's 5-5:30ish After working all day, I have prepared any one of my 6 dinner meals. Let's say it's pasta night. So, there are turkey meatballs, pasta, maybe some fish, garlic, olive oil, tomatoes, salad kind of dinner. It's made and Adam was encouraged to "help". He also was allowed to smell and take part.
We sit down to eat, everyone is sitting. Adam has a bit of food on his plate, maybe a small piece of meatball, a few pieces of pasta, a cucumber. We ask him to eat. He refuses, whines, pushes plate away. We eat and exclaim how delicious everything is. We then ask him to try one bite. If he gives in, he will then force himself to gag and sometimes vomit. We clean him up with little fuss and ignore, then we put him in his chair again and ask him to try a bite. He asks for a toy or tv. We tell him if he eats one bite, then he can have whatever it is he wants. Sometimes he will do this, most often he does not. Now he throws food off the tray. We make him get down and pick up the food and then return him to the chair. We ask him again to eat, now he will say he wants something that's not offered. Now we give him whatever he asks for: cheese, crackers, yogurt, milk. He does not eat any of this and his tray is a pile of food. At this point we realize he's not going to eat dinner, we hook up his high protein manufactured in a can food into his feeding bag and put it through a feeding tube into his stomach. He must stay sitting and chilling, or it's too difficult to deal with. He can't really "go play" while he's being fed this way and too much activity causes him to wheeze, cough and vomit because he can't handle mucous well and has lung issues.
We put on Max and Ruby or Wiggles and he gets tube fed for 45 minutes.
We are worn out, frustrated and now clean up the kitchen.
We've tried all of our state's feeding centers (two) and now went out of state to Philadelphia. We waited 2 months to get an appointment with a team. This was a nutritionist, doctor, speech pathologist, occupational therapist, and psychologist all specializing in pediatric feeding disorders. They asked us tons of questions, we had ALL medical records sent, and they evaluated Adam. After 2 and a half hours, they had us go play for 30 minutes or so and they all went into a room (think tank) and talked about their findings and developed a plan. Then they returned and shared their findings and suggestions with us.
Here it is- abbreviated version:
nutritionist: no suggestions. He is alive solely on 4 cans of manufactured food.
doctor: prune juice to keep him regular and follow with our Gi every 8 weeks
speech: She was impressed and applauded our work and how far we have brought him in 6 months (he was only able to make noise at 2 years old). She said our signing and pecs helped him.
OT: more food play
Psychologist: A 30 day intensive "feeding camp" where he can be taught all that he is missing. His beginning was so hard: Tubes everywhere for so long that he does not know that food equals warmth nor does he recognize hunger and know what to do to deal with that.
This 30 day hospital program is one of 3 on the East Coast and the only one that is under 3 hours away. NJ public assistance medical (which we have just for Adam) does not cover this, and our regular health insurance carrier decides if this treatment will be covered on a case by case basis. So, it's up to the insurance company if he will get this treatment. I am praying that they see that it will help him and is more cost effective in the long run.
I asked how much does it cost, if it's not covered, and the answer I got was "we've never had a family able to go if their insurance doesn't cover it."
Great. just great.
Please come through, Mr. Insurance Carrier, please.
6 years with Asha
1 week ago