So angry

We have been going back and forth with Blue Balloon this last week. Trying to get feeding Therapy for Ethan.

Originally we had gone back and asked if they would take a clinical clearance report from Ethan's community SLP. They said no, because of their comfort level we would need to present medical evidence from a swallow study and upper GI study that clears Ethan medically.

I was thinking maybe with Ethan's 1 month swallow study no one will help us, even though he is clinically cleared. So I made a call to McMaster feeding clinic to set up testing.

Kate is on mat leave, so the other OT Angela was there to take my call. I explained about Ethan, and she remembered a bit about his case. I explained what Blue Balloon needed and what our community SLP had said.

Angela said that basically if an SLP has cleared someone clinically there is not much they can do about getting these tests done. She said there is a huge wait list as outpatient tests only happen on Thursdays, and before they even think about doing these tests, the patient goes through a clinical observation where she watches them eat. If they are cleared clinically, they don't go through the tests.
As Ethan has already been clinically cleared by their community SLP, she assumes that there would be no need for testing and subjecting him to the additional radiation. She offered her number so that Blue Balloon can call her to talk about it. However, I mentioned that we have already suggested calling to get clinical clearance by MAC and they won't, but we'll mention it again.

Frustrated, I did not want to talk to Blue Balloon, so Shawn made the call to them. He reiterated what was said between Angela and myself and said that we could get our community SLP to submit a report to them clinically clearing Ethan. He asked what had made them come to the conclusion that he needs medical clearance and their recommendation to stop feeding Ethan at once. The Blue Balloon SLP said that their assessment was based on the results at Ethan's 1 month swallow study. Shawn told her that for all intensive purposes that at 1 month old Ethan was basically a dead child!
Shawn asked if they have experience with children that have feeding aversions and are tube fed. She said yes and said that they have a child who they are helping currently.
She said that if we get a report from our community SLP that they would review it and decide from there.

Our community SLP is writing the report and will give it to us next week to pass on to Blue Balloon.
Which leads us to today's email from Blue Balloon.

The SLP mentions now that they do not do "food therapy" they do something called "OPT", and with conversations with us she thinks we want "food therapy". No duh! We're there because Ethan is not eating! We have no idea what therapy we want or what these are as no one has explained that there were different programs there or what they are. We had only received "We can't do anything until we get these 2 medical tests and he's cleared medically not clinically". She's asking what specifically we are looking for.

WE DON'T KNOW!!!!!!!!!!!!!! Feeding therapy to us is, spend time with him, and figure out what therapy he needs to progress. If we knew exactly what his deal is, we wouldn't be asking!

In addition I have called Ethan's OT at Kidsabaility to see if she can take him on for more sessions dealing with sensory techniques and not fine motor skills.

So we wait...