Hey guys. Please forgive me for the late entry, but is it really that bad to be getting out of the 'habit' of writing on Caring bridge? I'm really thrilled that we don't need it as often, but I'm just as sad to see this website go, as we've come so far because of it!
Here's the update.
Last Friday, Jentai went in for her monthly chemo, as well as an appointment with the AFO (brace) specialist. The day was a huge mix up. I totally spaced and forgot we even had an appoinment, and when I realized it, it was over 2 hours past our appt time!
The Orthopedic Specialist was supposed to meet us at the clinic during our appointment, too, so now we had to reschedule on the same day, if possible, for both the clinic and the AFO's!
We got our appt set for 2pm and I called the Orthopedic office. He *might* be able to squeeze us in and meet us there at 2. What luck!
During the clinic appointment, however, we got a call saying that they wouldn't be able to make it, but we may be able to work something out after the clinic, as their office is right across the street, and *someone* should be there.
In the meantime, her numbers looked amazing, so we finally were able to increase her meds, so she is now on 100% dose. She's been on 75% for a long time now, not being able to raise up due to her low numbers. I actually chose not to raise them the last time we had an opportunity, since we were leaving for Florida, and I didn't want to risk her numbers dropping if we were leaving the state! So, we finally had the chance with no interferance. We'll be going back in 2 weeks to just check her numbers and make sure her body will tolerate the 100% dose well.
After the clinic appt, we walked over to the Orthopedic office. Having to go around all of the construction of the hospital, 'across the street' turned into roughly 2.5 blocks. It turned out to be really good, since they could see how the AFOs fit on her legs by the red marks they made on her legs. Apparently, due to her growth and muscle strength shifts, the AFOs didn't fit her at all, and weren't doing her any good being on.
She walks pretty well without them, however he told us he could show us picture after picture of kids on the chemo drug Vincristine (The one she gets monthly) who's feet and posture have sank because of the legiments being affected. And once they fall, there is no fixing them...
We've already seen a little of this, which is why she got the AFO's in the first place, so right now we're in a 'proactive' instead of 'reactive' state.
She got fitted for new AFOs which will only be ankle height, if even, and accentuate the arch in her foot so that her legiments stay strong. She also picked out a brand new design. :)
As I said, she walks fine without them now, so it's not that she needs them to walk, it's just to make sure that she stays that way. She'll get her new braces at her next clinic appointment on the 19th. Until then, she's brace-free, since her old ones were doing more harm than good the way they were fitting.
So yay! more and more good news :)
