[Boatanchors] OT: Noelle

Michael Tauson wh7hg.hi at gmail.com
Sat Jun 22 02:25:36 EDT 2013

I think most everyone here knows about my precious daughter so I won’t go
into backstory.  However, I thought maybe I’d bring everyone who’s
interested up to date on what’s happening with her.


She’s gone from crutches to a walker to a powered wheelchair in the past
year or so.  She can still use crutches but only for the amount of time it
takes to get out of her chair and into a vehicle, and even then it’s
difficult.  Her pain meds are becoming less effective and higher doses are
not a good idea since the interaction with other meds is already barely
tolerable.  Her docs are looking at some new and not fully trialed meds
which Noelle’s willing to use if she can get some.  


In the meantime, her eyesight is failing to the point that glasses soon will
be pretty much useless no matter how strong they are.  With that, she’s
developed muscle spasms & cramping which is making even eating a challenge.
They’ve tried what was supposed to be the best med for it but she had
adverse reactions to it, in part due to the other meds she’s already taking.
Other meds aren’t effective so the current plan is to go back to the first
one and pump it directly into her spinal cord which bypasses the rest of her
system and the attendant problems.  The pump has to be refilled, recharged
and recalibrated every few months, a process somewhat complicated by it
being implanted in her abdomen.  (I asked if they were going to install a
zipper and she just growled at me.  I can’t understand why.)  


At least her hearing is hanging in.  This is good since talking with each
other has become exceptionally important to her of late.  (It always has
been a part of our lives but now she needs all the reassurance she can get
plus figuratively being in daddy’s lap.)  


She’s scared and I’m afraid that reaching 40 years old may have been a bit
optimistic.  We don’t talk about that but it’s always lurking in the
background.  She’s tough and a fighter – She always has been – but that
toughness is weakening.  The MS et al are wearing her down faster than
anyone expected.  


Parents should not ever bury their children.  If you have kids – even adult
offspring – let them know how much they mean to you before it’s too late.


Best regards,


Michael, K3MXO, A&P 1803851 Ph: 1-866-733-0218

What flickering lights mean: 1% electrical problem. 99% demons




Hiki Nô! 


More information about the Boatanchors mailing list