As special needs parent I have to (along with my wife) make some really tough decisions. Honestly, we have very “easy” decisions to make anymore. Right now we have a problem and we are trying to figure out a way around it.
Emmett is scheduled for the sleep study tonight form 8pm-5am Friday morning. We then will have to leave the hospital, kill time for about 3 hours and then be in Cleveland for more Emmett related therapies. Akron is about 25 minutes form my house and Cleveland is about 1.5 hours from my house. We will be doing all of thins on ANOTHER night of no sleep. The other issue is I think the sleep study will be a waste of time. Not because I don’t want to spend the time there but because I don’t think there is a chance in HELL that Emmett will tolerate it. He will have a bunch or electrodes glued to his head. Emmett won’t wear clothes most of the time and screams if he gets sticky, dirty or wet. How is the world will he tolerate this? Think about your child would they? Emmett has rather EXTREME sensory issues and I think would be an all out assault on them. So I called the Akron and they are supposed to call back to discuss it.
We are at a crossroads with Gavin as well. The hallucinations are getting worse each night. He are increasing the anti-psychotics right now and see if that helps. It will likely just make the movements worse. We are getting backed into a corner right now. I really fear that we are going to have to return to Cleveland. A psych hold at Akron isn’t going to cut it. He needs “REAL” help like inpatient care. We need to figure out that the hell I going on with him once and for all. We owe it to him get to the bottom of this or at least make the hallucinations go away.
I don’t know how we are going to do this….