As of last Friday, we we have officially ended our day therapy run with Shirley Ryan. Team Marcus is a little disappointed with Marcus’ early dismissal. The first inpatient stint was cut short after four months due to the  tone in his body. Shirley Ryan requested that Marcus get a  baclofen pump, and they told us they would be able to do some serious work with him once that was accomplished. However, despite Marcus undergoing the baclofen pump placement surgery, his therapy did not last nearly as long nor was it as intense as the therapy prior to him having the pump.

The therapists at Shirley Ryan are of the belief that the family members can provide the physical training, occupational therapy, and speech therapy for him. I did give a little pushback, stating that I/we don’t have the expertise or equipment to replicate the level of care and exercise that Marcus needs, but that did not matter. Shirley Ryan has told us that if he has a breakthrough (consistent communication with verbal and/or non-verbal would be example of this) that they would bring him back in for another round of therapy. One can’t help but feel that they are giving up on him because his progress has not been as quick as they had hoped. This  second round of therapy actually felt much more clinical, rushed, and disorganized. Marcus was passed from doctor to doctor after we were told he would be retaining his same doctor from before. That doctor ended up relinquishing Marcus as he thought a fresh set of eyes would be helpful.

It is unrealistic to expect caregivers to have the same level of energy, time and ability to conduct therapy sessions with him as professional therapists. We are all doing the best that we can, but we know our limitations.

This whole experience has shown us that the systems in place to assist those who have had a tragedy aren’t always as robust and comprehensive as you would expect/hope for them to be. Almost Home Kids tried to push us out with only 56 hours of nursing and a false assurance that it would be a safe transition, when clearly it was not. Now Shirley Ryan is trying to convince us that our in-home care and abilities are on par with theirs, and we have no confidence that it is.

So moving forward, we will still be doing neurology visits and the hyperbaric chamber. The nurses we are using did witness some of the stretching and therapy exercises and so they will also assist in giving those to Marcus. There is an also the possibility of us looking at other physical therapy facilities for someone in Marcus‘s condition. No stone is being left unturned.

As always, thank you to the friends and family who have stepped up continuously throughout this ordeal. Believe it or not, we are almost at the two year mark, and we couldn’t have made it this far without the great support we’ve gotten from everybody.