Just want to let all the local folks know that Miss Abbie and I will be in a piece that KHON, Channel 2, will be running at 5,6,and 11 tomorrow night (6/5). I found out around 10am today that they would be at the house at 11:30.
Hmmmm…no nursing help…a quick survey of the house – yikes. A quick look in the mirror – double yikes. We managed to get Abbie in the bath, dressed and looking great, the house put together, and me into the shower and at least dressed in clean clothes. No woman wants to be caught on camera without makeup and jewelery on, but it was more than I could fit into the whirlwind this morning. I suppose the viewing audience will be treated to reality TV, Vara-style. (triple yikes).
We will be part of a story announcing the selection of the Center for Disabilites Studies at UH as the Hawaii Center for Excellence for the Sarah Jane Brain Project for Pediatric Aquired Brain Injuries. Finally, there is hope of a national network collaborating to find solutions. I am hopeful the SJBP will give a voice to the millions of brain injury families currently without a ribbon, march, or national fundraiser. We’ve all been quietly struggling to achieve recovery in isolation. There is power, and there is renewed hope, in numbers. I am confident there will be much more to follow on this issue.
There have also been a couple more great things happen just since the last update. We visited Abbie’s neurologist on Tuesday, so I was prepared for a scolding. You see, her medications have begun to make her very sleepy in the morning. I gave them separately a few times to see which one was the culprit. Surprisingly, it wasn’t the spasticity med (Baclofen)but rather the seizure med (Trileptal)that was knocking her out. So, I started lowering her morning dose very slowly. Not generally something you should do without first consulting the neurologist, but I felt confident that Abbie could tolerate a slow weaning.
That is, I felt confident until I was sitting in Dr. Y.’s office and had to fess up. Instead of delivering a tongue-lashing, he broke into a grin and said, “Well, then let’s do a proper weaning trial!” This involves a pre-wean EEG, then the weaning, followed by a post-wean EEG. I was thrilled by his support, but even more encouraged by what he said next. “If she fails this weaning attempt, then we will just try it again in a year. If that one doesn’t work, we’ll wait another year and then try again. I think that getting her off this med is the next big milestone we are shooting for.” Oh…my….goodness. To have a neurologist commit to trying again and again — blessing beyond measure!
In PT on Wednesday, her therapist turned to me at one point and said, “I don’t know what you guys are doing lately, but just keep doing it. She is changing so much, getting stronger, having better vision….just keep it up!” Days like that are really fun.