Metachromatic Leukodystrophy (MLD)

Ahhh. It's finally Spring and we look foward to the warmer weather, longer days, spending afternoons on the deck.  A lot has happened since my last post and I'll touch on the highlights:

Darlene has been very busy taking Laura to various appointments and consults, some of which have been assessments, pressure mapping (while Laura is seated), re-evaluation of Laura's wheelchair, meetings with our R.E.M. (Rare and expensive case manager) coordinator, and more.  Today Laura had here DPT inoculations re-administered since these were lost as a result of the bone marrow transplant.  Considering that  last month Laura had the shingles, various doctors thought it best to re-inoculate her to minimize the risk of GVHD (graft vs. host disease).

Since last month, Laura has received an additional piece of equipment, it's called a "Stander", and safely allows Laura to be in the standing position without risk of falling.  Our goal is to have Laura stand for at least an hour a day. Until we got this equipment it was Darlene and I who would literally hold her up while wrapping our body around her which was very time consuming and required us to be careful not to slip or become distracted by weight shifts.

This Stander makes it quite a bit easier. When not in use the seat is actually in the down position.  Laura gets on the seat and all parts of her are strapped in - starting with her feet, and including her thighs, waist, shoulders, and chest.  It's almost as if she is immobile.  Then the seat is pneumatically pivoted into the standing position.  From there, Laura can either stay stationery or she can use the recumbent feature to move her arms and her legs a little.  Right now it's difficult to move at all because of her AFO's (ankle foot orthotics) but at times she does have enough energy to move a little.  It may not seem like much, but Laura is able to experience a degree of independence in the way she stands and moves.

Laura with a thumbs up sign

Last month, Laura was able to experience something she used to enjoy - riding a bike.  At an early age Laura started riding BigWheels, then migrated to scooters and bicycles.  Last month she was able to ride a specialized tricycle through the halls at Kennedy Krieger.  Imagine the freedom Laura experienced and joy Darlene felt as Laura intuitively exhibited the motor skills necessary to propels this 3 wheeler. Moments like these let you forget about the set-backs, discouraging news, and crys of pain that occur 2 - 4 times a night that require tending to.