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Hello @janoh,

My heart is touched by your daughter's situation and the choices you need to make. As you know, on Mayo Connect, we are not medical professionals, but patients who are here to offer support and encouragement.

With that said, while I don't know much about these types of brain disorders, I can recommend that you seek a second opinion with a doctor who is a well-known specialist in this area of brain problems. It should be a specialist who can read her MRIs, review her surgical records and if possible exam her in the facility where she is or better yet if she can be moved with assistance to see that specialist for an exam.

Is your daughter able to walk, sit, talk, etc? Does she remember you and other family members? What cognitive deficits does she seem to have? Her inability to "following commands “consistently” should be reviewed by another professional in the area of physical/occupational therapy. There are PTs and OTs with different skills, training, and abilities to diagnose and work with people with a serious brain disorder.

You don't mention the city where you and your daughter live, but if it were me I would look for the best neurophysiologist in the area so that her physical and cognitive abilities could be evaluated.

A second opinion is so very important in situations like that of your daughter.

Will you post again?

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Replies to "Hello @janoh, My heart is touched by your daughter's situation and the choices you need to..."

Thank you!
We live in Ohio, suburb of Cleveland. We have tried to get my daughter in with three different Inpatient Physical Medicine and Rehab Facilities. 1) UPMC denied her because they wouldn’t accept out of state Medicaid. 2). OSU Wexner Medical Center they felt that she wouldn’t be able to handle the intense 3 hour a day, 5 days a week physical therapy. 3) Metro – Cleveland same reason as OSU.
My daughter has a trache and a feeding tube. She is non verbal. She can follow you with head and eyes when you move around and talk to her. She answers your questions either by squeezing your hand or nodding her head. She can wiggle her toes on her right side and a little bit on her left (her stroke affected her left side). She definitely knows we are there.
Our concern is: How will she be able to follow commands “consistently” if no one is working with her consistently. The nursing home say they are working with her but how do we know this (we can’t be there 24-7) When we question them they always have an excuse (short staffed, they will do it tomorrow, etc).
We have established with a PM&R Doctor and we have a follow up with her, but because of the pandemic, it is rescheduled for later May.
It’s frustrating because it has already been over a year and she hasn’t really had any physical therapy. My husband and I visit every day and we try to do the best we can with working her legs and arms.
We are not giving up and I know my daughter doesn’t want to give up either!