It’s been a while since our last dose of good
news, so we wanted to give you an update on the most recent happenings in our
world. (Also- I wrote this about a week ago, and am just getting around to publishing... sorry for the delay)
Last Friday (two weeks ago really) was a “UCLA Day”, as we call them; a
day of early rising and hitting the road to get up there for a day full of
poking and prodding. On UCLA Days when there is not an MRI, the drill is
usually pretty standard: blood work, followed by a check-in at the research
center, a quick lunch, and hopefully back on the road before traffic gets too
horrendous. Friday’s check-in was positive and uneventful. (PS- we like
uneventful) Blood work came back fine and the study meds will continue as
directed.
Recently, mom started seeing a new eye doctor, to
get a second opinion and some occupational therapy for her loss of vision. The
loss of peripheral vision on her left side remains to be the biggest struggle
and hindrance of her day-to-day progress. Imagine not seeing someone who walks
up next to you, or passes you something at the table, or just being unsure of
your surroundings because you’re only ever seeing just half. Obviously, this is
a problem that could be much worse and if this is the challenge that she has
to live with, we will deal; however, it most definitely makes things difficult and most of all frustrating. She now has a new contact prescription and new
glasses. :)
Her new Dr. seems to believe that with time and
specific therapies, the pathways in the brain that carry the optic nerves and fibers that control vision can be restored, at least somewhat. This was music to our ears and
we are hopeful! So for now that means, weekly visits to a “spinning table and
flashing lights” and daily eye exercises. (I apologize for the crude
explanation, but that’s the most basic description) Like most people going
through any type of physical therapy, Mom doesn’t exactly enjoy these
therapies. But agrees that if it will help her current vision, it will be worth
it.
As always, we as a family, on behalf of Sue, ask
that you continue to think positive thoughts, and send up prayers for strength
and complete healing. Through all this
we know one thing for sure- God is in charge and He is good. Dr.’s are great,
and we’re thankful for those we’ve been blessed with, but HE is the true
healer. So please, ask for his favor in her health, and give thanks for all
that we’ve been given along the way. Wednesday of this week (last week) was exactly one
year from Mom’s first surgery…a milestone that many with her diagnosis sadly do
not get to see… we have so much to be thankful for.
As her daughter, I ask something too- if you find
time in your coming week to find some way to send some words of encouragement
to her, be it through the internet, in a card, text, or voicemail, know that it
will be graciously received. When we talk about the people that this blog and
the Facebook page reaches, it brings tears to her eyes every single time. You
are so important to her; please let her know you feel the same way. Every bit
of encouragement and positivity is stronger than any dose of trial medication. :)
On that note- the same goes for Roger/Dad. Those of
you that know this dynamic duo know that they are a true team, and what one
feels, the other does as well. He could use your encouragement. He is, as
always, everyone’s rock.
Thanks for reading. Sue's next MRI is scheduled for Friday April 25th. I will post results here.
