Metachromatic Leukodystrophy (MLD)

It's been quite a while since my last update and I want to assure all who regularly track this blog that everything is going well.  Traffic on this blog has been consistently increasing to levels that we never really thought would be reached.

* * if you ever have any questions or comments about what is going on, or more importantly if you find yourself in a similar situation, feel free to post a comment and we will do our best to get back in touch with you * *

We are trudging through... Darlene and I have set up a system allowing us to take care of ourselves.  We alternate 4 - 6 hours per weekend where each of us can go out and do whatever we want without fear or guilt of leaving 100% of the care responsibility on the shoulders of the other.  My first 4 hour reprieve included breakfast with some friends of mine, followed by shopping for some sandals and gym clothes.  It doesn't seem like much but it was actually quite refreshing.  Later that day I met Darlene and Laura at the gym where Laura goes swimming - which is a whole other story:

• going to the gym is at least a 2 1/2 hour event and includes getting ready for the trip, changing at the gym, special transport in a PVC wheelchair, spending time in the water, the requisite transfer into the hot tub (2 people required to lift Laura into the hot tub and safely maintain her position in the tub), the dressing back into street clothes and the return home.

In addition, Darlene and I  also alternate nights on call.  Laura usually wakes 2 - 4 times per night with some type of pain, though the past 2 nights we have experienced a welcomed reprieve in that she has slept at least 7 hours without a hint of pain. 

In spite of it all, we are making the best of life.  A couple weeks ago we went to a cook-out at The Wellness House where we enjoyed good food, good company and the live music of Bob Sima.  The pictures below show Laura with her sister Emily.  Emily is deeply involved in caring for her sister (Emily was also the bone marrow donor) and takes as many opportunities as her schedule allows to spend time with Laura.

 

And through a generous contribution by Cool Kids, last week we were able to attend a Baltimore Orioles baseball game, a favorite family past time, as proven by this picture of the children some 15 + years ago:

 

left to right: Laura, Emily, Timothy

 

Other developments include:

• we've recently upgraded Laura's Helsinger collar to better support her head
• Laura will be getting a new wheelchair next month - one that has a built in tilt feature
• we are planning for an eventual wheelchair assessable van and modifying of one of our bathrooms to better tend to Laura's shower needs - we are working with the state to see if they can provide any assistance with this.