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.