Metachromatic Leukodystrophy (MLD)

We usually start getting Laura ready for bed by 8:00 in the evening.  I move Laura into the chair glide, take her to her bedroom on the second floor, get her dressed and ready for bed, place her in her bed, give the medications, and brush her teeth.  Darlene comes in later and gives her the 9:30 medicine and tube feeding.  Usually I'm asleep by the time Darlene is finished.

We do make a pretty good team by sharing these responsibilities. We have found it's all about taking turns - one person taking their turn in assuming the responsibilities while giving the other a turn to take a break.  Sometimes the three of us do things together like taking Laura to the gym.  Total time required to make this enjoyable for Laura:  3 hours (getting ready for the trip, driving, locker room, and so on).

Laura usually gives a "thumbs up" sign to either convey a "yes", or "I'm happy".  When she combines this with a smile we know that she is ecstatically happy, as is the case when we get Laura in the hot tub after she floats in the therapy pool for 45 minutes.

Other times Darlene really stretches her own time and energy to make Laura's day a little brighter.  A couple weeks ago Darlene found out about a unique opportunity that she knew would highlight Laura's day and give her an experience that would carry her through for a  few days.  In this case it was a daytime community function where Ray Rice of the Baltimore Ravens made an appearance. Thank you Ravens organization for supporting your players and their community involvement; thank you Ray for making Laura's day a little more enjoyable.