** Hi all- internet has been touchy the past few days. Having difficulty uploading videos at the moment. I’ll figure that all out soon hopefully. Here is an update from earlier this week!
It’s Tuesday and Tyson’s in his occupational therapy session. I sit outside the room on a bench and usually read since I don’t get much of a chance to when we’re home. Today I’m typing and listening to Sade. 🙂
I’d say we finally kicked our jet-lag on Sunday. Now we are in our groove…PT/OT sessions, daily stem cell injections, and as for me, I’ll start running later today on a treadmill in the gym. Tyson usually joins me and listens to music while I run. We haven’t been outside since Thursday when we went for the brain scan. Seems crazy and maybe it is, but the weather is so hot and humid…and let’s not forget, it IS monsoon season! If it’s not raining later, we’ll go sit outside the hospital and watch the people and cars go by.
We are meeting more patients and that’s always so nice. The other two Americans here are chronic Lyme patients. Both are so sweet and both are making great strides. I’ve said it before…it’s such a family atmosphere here. We’ve made friends with patients from all over the world: Germany, Australia, Iceland, Africa, Iraq, NY, Boston, and Chicago and there’s a common denominator…everyone here is a fighter and beating the odds. Everyone encourages one another and it’s just such a wonderful thing to be a part of. Not to mention the staff at NU-Tech…they’re amazing. The sisters (nurses) take such good care of Tyson and of course you know he makes them laugh really hard 🙂 The doctors, the therapists, and the whole staff are just so friendly and caring. I believe whole-heartedly that this stems from Dr. Shroff. Anyway, that’s just something I wanted to share because it’s a common topic of discussion between me and Tyson and it’s worth blabbing about 😉
All right- onto the good stuff. Dipin, Tyson’s physical therapist stands him up once a day, Monday-Saturday. Tyson says he feels stronger now when he stands. When we got here in February, they made braces for him that went up to his armpit and locked his rib cage to his hips and locked his knees straight so they wouldn’t buckle. He started out standing for only 5 minutes. The pain on his knees and ankles was too much for him to bear. By the following week, he was shuffling his feet and by April when we left, he they had removed the connection of the brace that bound his hips to his legs and he was taking slow but steady steps. He had also gained 2 cm of muscle on his arms and quads. When asked to flex his quad in February during a series of baseline tests, you could see only a flicker of his muscle move above his knee. Two weeks into treatment, you could see the entire muscle engage all the way up to his hip!! It is truly like watching his body wake up.
When we went to Burke in May, they were hesitant to walk him for fear that it would hurt him or cause damage (despite the fact that he was up walking 6 days a week in India). They had new leg braces made for him that are pretty incredible. Unlike the Indian braces, they allow him to bend his knees and they can be put in a LOCK position so that when you’re standing him up, it clicks each degree he rises so he’s stable the entire time. Anyway, it was a huge setback having him NOT stand the entire 3 months we were home but the upside is he had great PT/OT and these great new braces made.
So now, back in India…he’s been adjusting to standing and walking with the new braces the first day, he stood for roughly 10 minutes. On Monday, he walked about 10 feet and today he walked about 20 feet! It’s so amazing to see him improve daily.
All right…more to come in a bit!
Thank you ❤