October 11, 2006The past several months have brought a lot of activity and some changes. First, we were offered the opportunity to have respite care (nursing assistance for Keni) at our home for some hours each week.
This didn’t work out yet since both showed up at the home expecting a bedridden and comatose child that would merely need to have machines monitored. Both were quite surprised to find a kid that wanted interaction, help standing, walks around the neighborhood in her stroller, and other constant attention. One had even showed up with a book she thought she would be able to read on duty, which is one reason Keni is in the shape she is in today—someone reading a book instead of paying attention to the kids they are supposed to be supervising! Anyway, we spoke at length with the agency, and determined if these were representative of the care they would be sending over, we’d find another agency. This is ongoing today.
The initial media coverage broke in May of this year. It was the intention of Howard Nathan of Dayton’s WDTN to get Keni’s story of near-drowning on the air at the beginning of the swimming season. They showed undercover video footage of individuals at the pool of the Fairborn YMCA playing on their cell phones when they should have been watching children in the pool. This is nearly 18 months after Mackenzie’s incident, and after several court depositions showing very little, if anything had changed. Reported everyone involved was asked to depart. I attribute this completely to the news coverage. Initial News Story
Now Howard Nathan has asked to do a follow-up on Mackenzie’s progress. He filmed her and interviewed us this past week, and should air the next story within a month.
He’s also found that during recent state inspections, the Fairborn YMCA is still non-compliant in many areas of child safety, so it will be interesting to see how that plays out in the media again.
On a brighter note, Howard mentioned that he could see a lot of progress in Mackenzie since the last time he saw her back in the spring.
Mackenzie continues to grow like a weed. We’ve had to make changes to her wheelchair to keep up with her longer legs. She has her first two loose baby teeth (lower front) and has recently begun Kindergarten. This was a difficult time for us.
With memories of her sister bounding into class all excited six years ago, and all the healthy children hugging their parents and running into school now, it’s just really hard to push that wheelchair into school and wish her a good day.
Mackenzie does seem to enjoy being around the other children, and with the recent changes in her behavior (I’ll go into that momentarily) we really believe she is still in there trying to get out, so maybe some of this educational activity will help stimulate her brain. The teachers and all the children simply adore her, so clearly some of that bright spark she used to possess is still in there, struggling to get out.
As far as her behavioral changes go, at the suggestion of her rehab physician, we began a trial of Provigil as a brain stimulant. She seemed to perk up a bit, and eventually we increased the medication. She has responded by being much more awake and alert throughout the day. She smiles often and her visual tracking has improved substantially. Additionally, she occasionally delights us with a giggle or a laugh, sometimes to a tickle, or sometimes when something just strikes her as funny. It is so good to finally hear that again. The first time, it was loud enough that I could hear her from downstairs, and I came running just to see if it was what I thought it was. It had been a year and a half since we had heard Mackenzie laugh. It is wonderful that it seems to be occurring more regularly as time goes by.
Three weeks ago, we began some interesting new therapy at the Therapeutic Riding Institute in Dayton. They take disabled children on horseback, with volunteer assistance, and get them used to a wholly different kind of sensory stimulus. The kids are suddenly forced to use muscles to balance and do simple tasks while the rhythmic moves of the horse keep them in constant motion. It wears her out, but Keni gets really big smiles when we tell her she gets to go ride her horse again.
Howard Nathan was there to film her last week, and he said he and his photographer thought they heard her telling the therapist to stop when she was tickling her with a feather duster. Although she still is incapable of speaking, she is more vocal with each passing month. We think she’ll eventually get there. Update Story
Now on to her rigorous therapy; she is still getting Physical, Occupational, and Speech Therapy several times a week each. She has been working on balance and trunk control, as well as bearing weight thorough her arms.
In speech, she has made a choice that she doesn’t want to work with switches, but she is willing to mimic sounds and exercise her vocal cords. This is great; we would much rather get her voice back.
As she is showing signs of responding to command more lately, they have recommended that Mackenzie be reevaluated for inpatient therapy, which would be far more intensive. This past Saturday, during a routine follow-up with her rehab doctor in Cincinnati, the doctor agreed we could try a two week readmission and see how it goes.
This may happen in November, but there is a lot of paperwork and insurance approval needed before it is a sure thing. We’ll keep you posted.