Wednesday, October 11, 2006

2006 October

October 11, 2006

The 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. 
Horse Therapy
It’s just another sign that she is still in there.

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.

Kentucky Speedway

Thursday, April 27, 2006

2006 April

Balancing for 3 seconds
April 27, 2006

It's been a very busy couple of months since the last update.  The holidays were very difficult for us, especially since our beautiful little girl had been so different just a year ago.  This past Christmas, Mackenzie seemed completely indifferent to the gifts and other activities that had her singing, dancing, and laughing constantly during Christmas of 2004. 
It was an extremely depressing time for us all.  We felt that if we could just make it to the New Year, maybe things would start looking up - but they didn't.

Mackenzie has been on several medications to try to help her brain recover from the damage inflicted by the lack of oxygen she sustained while at the hands of the YMCA.  Unfortunately, she began having serious side effects from one of the medications.  In January, she began a serious downhill slide.

She was constantly feverish and nauseated, sleeping throughout the day, and pretty much unresponsive.  It took a while, but the doctor figured out one of the medications she was taking was causing toxicity.
Christmas 2005

She was taken off the Depakene and almost immediately showed signs of improvement.  Suddenly she was wide awake and alert throughout most of the day.  She is now taking a Topomax and Lamictal combination which she apparently tolerates much better.  Along with the change in medication her appetite increased substantially. 
Despite the fact she is currently taking most of her nutrition via her stomach tube, she does occasionally eat small amounts of food we offer her by mouth, and she has gained a healthy 5 pounds.  Additionally, she has stopped drinking fluids through a straw.

In February and March, the issue seemed to be that she no longer wanted to participate in occupational and physical therapy.  Along with her new alertness there seemed to be a newfound stubbornness.  She simply didn’t want to do the therapy.  She cried and screamed whenever she was there, and it simply breaks our heart for her to go through this 'torture'.

Her doctor ruled out any new injury, and pronounced her in generally good health, other than the brain injury.  He finally told us that it is likely that Mackenzie is just protesting the therapy because it is very difficult for her, and like most typical 5-year-olds, she doesn’t want to do something so hard. 

However, it is important for her to continue to go, because only through retraining and repetition is there any hope of her regaining functional use of her arms and legs.  Otherwise, the muscles will grow tight and useless.  Now, she can be completely relaxed in the therapy room, but if she sees the therapist come in and sit down beside her, she gets upset.   It’s yet another indication that she knows what is going on around her.

April has been busy too.  Howard Nathan of the local NBC television station interviewed us for a news segment to be aired in late May.  It will be a warning to parents to be aware of what is going on at places like the YMCA where they would typically trust their children would be well cared for.
It will also expose that the YMCA was not and is not still following state regulations for the supervision of children.  The interview was hard to do, but it is our hope that if we can save even one family from going through what we’ve been through with Mackenzie, it will be worth it.  Initial News Story

Now as we move into May, we are still very busy trying to get Mackenzie the best care we can.  In three weeks we will have seen three different specialists (two neurologists and one rehab physician).  The neurologists are always difficult to pin down as far as potential recovery is concerned.
Trying to get off the couch

Her primary neurologist said it would be reasonable to expect her to continue making the progress she is making now.  Even though it is slow progress, at least we are still moving in the right direction.  He also cautioned us not to get so involved in therapy and doctors visits that we forget to take time to enjoy Mackenzie the way she is now. 
He doesn’t think we are at that point yet, but he has seen many a family go down that path.  We also saw a new neurologist (for a second opinion).  He confirmed our current treatment plan is reasonable, but suggested a vision therapy and possibly a new medication.

He said that patients experiencing brain injuries similar to Mackenzie’s typically may have ongoing problems with speech and motor skills, but as many of her doctors attest to, Mackenzie has been anything but typical so far. 

He also said it was more the control and vision areas of the brain that were affected, not necessarily the areas responsible for intellect.  This confirms what we suspected; she is in there trying to get out.

He also indicated that a brain injury such as this would probably only result from oxygen deprivation of five minutes or more.  It’s a shame to think of our precious Mackenzie lying face down in the pool while her brain was dying from lack of air.  All because a lifeguard wasn’t paying attention (what was he doing for that long) and a preschool teacher read a book outside the pool area in defiance of state guidelines.

On Monday we follow-up with her rehab physician, whom she hasn’t seen since January.  Other people that haven’t seen Mackenzie in a while comment on how good she looks, so it will be interesting to see what she has to say.
While Mackenzie may not be speaking yet, we remain hopeful that we will get to that point in the near future.  We are confident that this special little girl is destined for something great, and perhaps this experience will give her the strength to deal with something important in her future.

And perhaps the best hint at better things to come, she is beginning to show us her smile, and an occasional small laugh.