Brandon progresses again 3/17/09

It was a long winter full of much defeat and digression.

We visited him on 3/17/09 at the acute rehab facility he has been in since March 6, 2009, Northwoods in Cortland, NY. Brandon is using a standard walker, with his leg brace and the assistance of therapists.

November 30, 2008 Update / Less than Triumphant return to NYS

It's been 3 months since a video has been posted regarding Brandon's progress and recovery. Brandon came home 8.1.08 with 24 hour nursing care. The nursing agency walked out with 48 hours notice on 9.24.08 after a nurse practioner screwed up the order of care (changed it to 8 hours a day, (4 hrs, 2 x's a day) without ever seeing Brandon. Even though there were more current orders for 24 hour care by his actual physician, comp chose to only honor the NP's. A comp hearing was requested, the 24 hours were put back into place, but a nursing agency couldn't be found. We settled for aides for a while, who could not do the catheter or bowel management care. The aide agency walked out on 11.15.08 again with 48 hours notice. I contacted the NYS Dept. of Health an filed a formal complaint. Both times this happened, his 24 hour care landed in my lap. I'm not a nurse, never was trained, never wanted to be trained, and have 2 other kids in addition to Brandon, who also need me. I've missed weeks of time at work which I am no longer paid for, and this is truly a nightmare. There is no one to help him get ready for any appointments as most of the time, I go to work and leave him alone. He isn't able to get to PT or OT, to urology appointments, or any appointments without someone getting him ready. He can't even prepare a meal on his own. There is no transportation available for him because comp won't provide anything that isn't for a medical appointment. Even then he is not allowed to call the transportation company on his own. A couple of times Ethan has just picked him up and placed him in my van; just to get him out of the house. We have spent alot of out of pocket money for catheters when he had three UTI episodes with autonomic dysreflexia, and had 3 emergency room visits. Comp won't reimburse for those ($500) because they are claiming Brandon used catheters for other than medicinal purposes when he was at the Shepherd Center. Comp also is giving us a very hard time about reimbursing for the private care we paid for over the course of five weeks, that was when we could afford to do that, temporarily. Brandon's comp attorney told me only to keep copies of the checks we paid them, as it turns out comp wants w-9's and copies of their licenses. Two of the nurses we hired we let go - having come home from work one day to find one LPN doing all of her personal laundry here at my house. Within a week my dryer broke and I had to buy a new one. We have done nothing but lose money (over $2,000 to date), and live day-to-day struggling to meet bare minimum care for Brandon. For whatever reason I fail to understand, his care landed on my shoulders just because I'm here. The last agency called Brandon's primary physician, actually lying to him and saying that they left Brandon in the care of his mother, when they walked out. I was not even home when they left. I have called adult protective services, county nurses, anyone I can possibly call. There does not appear to be any way out of this nightmare. Brandon is couped up at our house, his health deteriorating, he is between kidney stone surgeries, wearing an indwelling foley catheter that he shouldn't have to be wearing only because there is no one to assist him with self straight-cathing through the 24 hour day. It is impossible for me to shower him every day as that, with his bowel program, is no less than a 3 hour task. By the time I pick his sister up from school at 6:00 pm, I just don't have the engery left.

The system has completely failed him, and us. I am expected to perform the tasks of a registered nurse and nobody seems to be listening to me - I don't want to do this, I can't do this, and Brandon doesn't want me to do it. This problem really belongs in the lap of worker's comp. I involved law enforcement when Brandon was about to be returned here on an ambulance from an emergency room visit. I presented the three physician orders for 24 hour skilled nursing care, and showed them that care was not present in this home. It was not safe for him to be here. They left him here anyway. When I asked adult protective services to open a case on me, I'm an adult and I'm being abused by the system, they offered to open a case with child protective and place my 14 year old daughter in foster care. Thanks, but no thanks.

August 1, 2008 BRANDON RETURNS TODAY!

Brandon Perrault - The Final Journey @ Shepherd Center 7.15.08

1st set of weights: 35 lbs each hand
2nd set of weights: 45 lbs each hand
3rd set of weights: 50 lbs each hand

Brandon was discharged 7/15/08 from the Shepherd Center. Still has many goals to reach - much OT and PT to be done. This video is Brandon working indepdently from Shepherd Center staff in the weightraining room. He has been doing this several weeks usually with his Uncle Jamie. Look - it's our favorite nurse, Althea!!

Brandon walks 250 steps at Shepherd Center 7.11.08

Brandon walked well over 250 steps on 7.11.08 during his Neuro Recovery Network Program at the Shepherd Center, Atlanta, Georgia. These were unassisted steps! My sister Sharon took the video and can be heard in the background encouraging him. The music is all by Smashing Pumpkins, this was Brandon's request. Please sit back, take ten minutes, and enjoy the wonders of taking these awesome unassisted steps. Unfortunately, Brandon's time at the Shepherd Center is coming to an end. Shepherd Center is an awesome place for anyone to rehabilitate and actually get back on their feet - possibly walking!! Put your faith in them - they can do it.

23 STEPS May ~ 2008

Simply put - Brandon took twenty-three (23) steps yesterday, with a walker!
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April 23, 2008

GREAT NEWS! Brandon is starting to move his left toe and have feeling in the left foot/tendents. He has been accepted into the Neuro Recovery Network program through the Shepherd Center and his stay in Atlanta has been extended. (We were expecting him home on 4/18/08). The NRN program is sponsored by the Christopher and Dana Reeve Foundation. Shepherd Ceenter is only one of seven facilities in the country offering this intensive locomotor program. The goal: walking again. My parents are on their way back to NY - left yesterday with some minor glitches with the rig, but they're en route.