Metachromatic Leukodystrophy (MLD)

It has become increasingly difficult to properly hydrate Laura.  On good days we've  been able to give her 30 ounces of fluid; more difficult days have been as low as 20 ounces. Neither level is really sufficient for her daily requirements.

Laura and Darlene in pre-op

After much thought, some consultation, and a brief period of sadness, Laura has received a G-tube directly into her stomach.
The procedure took 5 minutes and thankfully, and as a direct result of Darlene's excellent nursing skills, there have been no infections or bleeding.

At this time this is for fluids only and Darlene pumps about 32 ounces into her each day.  This is supplemented by traditional drinking. 


Laura still takes fluids the traditional way and it averages about 16 ounces a day.  Often fluids are given to her with a thickening agent, and always in either sips out of a cup or by teaspoon when she is unable to hold her head upright comfortably.

We have caregivers come to the house every week to assist.  These days are scheduled for days which both of us work.  And for those days that Darlene is not needed at work (she is on an as-needed basis), it gives Darlene time to run errands, go for neighborhood walks, or meet with friends. The image to the right shows her sister, Emily, assisting Laura with her morning breakfast and fluid intake. And Laura's loyal cat, Ariel, is always by her side.