March was a busy month for Greg. He has been having more difficulties with walking which is heightened when he’s tired.
He has had two surgeries – the first being a test trial to see if his body would react well to intrathecal (in the spine) Baclofen. Fortunately, it did! So the second surgery was to implant a Baclofen pump in his abdomen that is connected to a catheter in his spine to administer medicine directly into his nervous system.
He is now home recovering but has to return to Kennedy Krieger several days a week for a few weeks to adjust his dose and for physical therapy sessions to help retrain his walking.
We are seeing some improvements, albeit slow. The trial “reaction” is what is giving us hope and pushing him forward!
We ask our prayer warriors to continue praying for Greg – specifically for healing from surgery and for his body to respond well to the pump medication!
On a side note, Greg taught a lot of nurses and students about MLD during his six day stay at Hopkins! Raising awareness and hoping for a cure! Hoping to give more speeches at new venues in the near future!
Special shout out to our PT’s Christie and Rachel. Our Nurses: Keisha, Nelson, Ashley, Valerie, Danielle, Shannon, Kathy, and Hohyung! And our students: Taylor, Alisa and Richard (looking forward to educating some nursing professors!)
#Nevernevergiveup
