The location is a children's hospital so I am not sure why I was surprised that it started out more like a medical appointment than a feeding therapy session. Maybe because the instructions were to arrive with your child hungry, they will be evaluated by an OT and a ST, bring all of the foods you would normally feed him (ones he likes and doesn't like), bring bottles or cups he will use, bring spoons, etc.
They wanted to begin the appointment by stripping him down for height, weight, blood pressure, and pulse ox readings. I refused. My kid has been through numerous medical procedures, he is not a fan of doctor's offices, people in scrubs, being examined, being restrained, being stripped naked, etc. So why would you want to start a feeding evaluation by pissing him off. I said they could do that stuff at the end of the appointment. I still didn't like it; we had been seen at the same office Dec. 18th (not huge changes in the month since they did these stats).
So we move to the evaluation room, what I thought would be a therapy room. What is a therapy room...oh it should look like a home setting. Either a play room or a kitchen I would settle for a conference room. No not here, it is an exam room with a high chair. We were there for 3.5 hours in that exam room. Boy was it fun. The OT and ST were awesome, amazing, loving, caring, etc. The setting sucked. David was a trooper. He performed well showing his stuff. Good things like his OT skills playing with two hands, coloring, making straight lines, identifying some letters, signing and talking. And the reason we were there the lack of eating. I don't know how much I explained he does not swallow but they just didn't get it. Well I think they finally got it when we did feeding therapy. He tastes, he licks, he bites, he says yummy, he makes choices but he does not swallow. He plays with food and brings it into his mouth but he does not swallow.
After his stellar performance we had to wait about 15 minutes for a decision from the team (nutrition, GI doc, ST, OT). You would think it was his evaluation to get into private school. Well they came in and they accepted him into the program. It will be 5 weeks of intensive therapy ST 5 days a week for an hour OT 3 days a week for an hour and meetings with GI and nutrition each week. They coordinated the surgical procedure with the snooty ENT (which I was unable to do, so that was a plus). And now we wait we will get a call in 6 weeks to 3 months with a time slot. If the time slot doesn't work (because it is nap time or something) we wait until we get a slot that works. Then Steve or I will take a leave from work, FMLA and take half days for 5 weeks to get him to the Children's Hospital M-F and try to get him to swallow.
Our goal is not to get him off the tube, we just want a child that can swallow something like a bite of cracker or a spoonful of yogurt or a sip of juice. We don't expect a miracle....that will come in time.
