I’ve been doing really well the past week.  I think the good part of the steroids kicked in, or really, the crappy side effects went away.  I haven’t walked with the walker since last weekend and that was once for distance since my gait is off.  I’ve used the 4-prong cane but last night went out without any assistive device!  I feel much more steady and strong.  And even though my gait is still a bit off I’m more nervous about tripping over a cane than I am falling without one.  So I’m hoping to say goodbye to my 3 friends here….the collapsible cane my mom gave me, the 4-prong cane I had to upgrade to, and finally the walker that really became a major help when I needed it.

My other symptoms have been improving too.  I haven’t had confusion like forgetting how to use the microwave or any of the other crazy (and frankly scary) stuff from before….I still have some forgetfulness like repeating myself but one of my nurse friends said it’s way better.  The nausea has subsided.  I have way fewer spasticity problems and spasms.  I improved a great deal with P/T…..Brett, my physical therapist, said when I started my number or score or level or something was at like 43 and now I’m up to 52 which means I’m only borderline fall risk now!

My advice to people considering or going through HSCT….take the steroids if you need them.  No they’re not fun but they prevent further damage while you’re not on a DMD and decreasing the swelling in your brain and spine means your body can communicate better with itself.

Weather has finally been nice in Chicago the last few days so I was able to plant the flowers dad helped me to pick up.  I’m totally planning to rehab on my patio when I get home as long as I’m allowed to.  So many rules!  But I will walk on hot coals if they tell me.

So tomorrow morning Michael arrives and we’ll celebrate Mother’s Day with my family.  Hopefully we can have lunch outside if it’s a nice day.

Then Tuesday morning we’ll check in to Northwestern at 7:30am for chemo!

I’m feeling very positive, optimistic and calm.  But like I told one of the future HSCTers (you know who you are) the roller coaster of emotions about this thing is unpredictable.  I’m just very, very grateful that I have the opportunity to have this transplant.

I plan to keep my blog updated as I go through this process.

Thanks to everyone for the love and support.  🙂

Ellie