TrachKids.org

Hello All,
My name is Jennifer...mom to Riley who is 2 1/2 years old. She has a trach, feeding tube, hearing aids, cortical vision impairment. Riley does not independtly sit up or crawl. She does not close her mouth, suck, gag or swallow. She has been tested for everything and the dr.s have no diagnosis. We have had 24 hour nursing care until recently.  Our insurance wants to cut hours to 8 per day. We have tried to get government assistance and have been denied several times. Our daughter does not apply for Title 19 or SSI...we are running out of options. 
Does anyone have any ideas, thoughts, etc. I have thought about looking into nursing students & retired nurses but research has not yielded me much - yet.
We are still in the appeal process with our insurance but want to make sure we have a back up plan.
Thanks for your help.