My understanding is that things are going well. She works alone with her therapists and her days are long and hard, so by the end of the day she is not eager to bring us up to speed. Sounds like normal teen behavior to me. Her latest achievements include a lot of work with a four legged cane. She still uses the wheelchair and walker, but is doing a lot of work with the cane. Lauren told me that she has been swimming a lot now without a noodle under her (no floatation device) to include freestyle, backstroke (her best) and breaststroke, which is the best for her as it involves symmetrical (mirrored) movements. She told me she played volleyball in the community group. I asked if they were in wheelchairs? She said no. On walkers? No. I can't imagine she was able to balance, lean and lunge as volleyball would require, so I'll have to see for myself. Somebody asked me why she does art and music therapy. I suppose the easy answer is that it gives her something to do other than physical exercise, but I am sure there is a medical component too. Perhaps to make sure rewiring does not overtake creative space, or perhaps just total, well balanced cognitive stimulation.
Today they went on a field trip to the Vet hospital. I thought it was a funny place to visit, going to the V.A. hospital down the street. Turns out they went to the Veterinary Hospital at the University of Pennsylvania. Definitely more entertaining than the Veterans Administration hospital!
Lauren was home last Sunday for a 6 hour pass. I imagine the six hour number is insurance and reimbursement driven, but for the first time I think six hours was enough. Here is a picture of Lauren with her friends Tori and Michael.
I was a madman getting ready. I made a big sign on the garage saying Welcome Home Lauren!, started a fire, and baked brownies. Felt like I was trying to sell the house. She got a little emotional when she first walked into the house. We spent the first 2-3 hours as a family, Just Sandra, Jess, Lauren, James and me. She spent a little time in the living room by the fire, ventured into the kitchen for a while for a drink and some brownies, then Jessica piggybacked her up the stairs to her room where they spent an hour going through all the gifts, cards and mementos you beautiful people provided her. Eventually some additional friends showed up and we had a pot luck dinner. Jessica took her back to the hospital and spent the night with her. Lauren was sad, cried a little, but no major breakdowns. We hope to do it all again this Sunday for Easter. No baking or cooking though, a pizza and beer Easter this year.
Still no seizures since that first week post-surgery. She is on medication. We are weaning her off of her Zonagran, actually I think she is off it by now. She is still on Dilantin and Phenobarbital, both of which are old school meds that have been around forever and which we would most like to have her off of completely. The third med is Vinpat, a new age medicine that is less harsh. I am not sure how they will approach weaning her meds, but I would imagine they would get rid of the first two first. We haven't really had that discussion with the Neurologists yet. I think they want everyone to focus on rehabilitation first.
So the countdown begins, even though Lauren told me tonight that she did not want to do an official countdown. 12 days to the 13th, our scheduled release date. Her application for Camp Cranium is in, I spoke to the Director and she is on the list. I should have more to report tomorrow after spending the day here and observing all the activities.
No comments:
Post a Comment