On the road to explore Vision and Movement 4/14/2015
This journey
of Archers life will not keep us indoors and ban us from living a
'normal' life. The wonderful community of Dillon has teamed up to help
us 'Archer, Brandon, & Cheyanne' the ABC Sparks family to raise
awareness for our little guy and help fund our travels to seek the
specialized care. We have to jump into the cockpit and navigate who will
see and care for our little boy. Not one doctor has the answers and
with Archer's unique make-up we will be seeking out the best care for
him. His team has evolved so much in just a year within the state of
Montana. At the age of 10 weeks old Archer visited his first neurologist
and now has seen 2 additional neurologists, 2 different genetic teams
(the 3rd team is currently gearing up for the next phase of testing), 2
occupational therapist, 2 physical therapists, a speech pathologist, 1
cranial sacral therapist, 1 vision consultant, an ophthalmologist, 3
adaptive equipment outreach workers, not too mention his primary doctor
and nurse that follow him and provide referrals for his journey. Now, is
the time for us to reach outside the vast state of MT. This summer we
will be traveling to Pittsburgh to visit the only CVI specialist in the
US. Dr. Christine Roman-Lantzy has dedicated her life to researching CVI
and providing education, intervention, and training for families,
therapists, and other health care providers. We are excited to visit her
and of course do normal family things like visit the zoo, eat pizza and
ice cream! Brandon and I will travel to Vancouver, WA to partake in Dr.
Roman's 3-day hands on exclusive training that only 50 people can
attend (people fly in from all over the world). We are stepping into a
world of very specialized care seeking out neuro-opthamology,
neuron-pyshology, neuro-movement. Soon, the posts will get funner and be
lighter, I felt the need to back-fill a little history. Our little boy
will move, he does move, his vision is improving, and yes when looking
through our skewed scope of life it appears to be struggle, challenges,
but this is Archer's NORMAL life, this is our NORMAL life. The
complexity and intensity may seem overwhelming to most and immediate
reaction is sorrow, however hold the sorrow. We will soar into this
world. We will slow down from 'society norms' and venture into the world
that lays beneath our feet. Oh wait we already do. This little man
camps, he loves walks, he volunteers on the Walking School Bus (http://www.beaverheadtrails.org/news/wsb-cheyanne), he explores life. We will walk through fields of open land with mountains in the backdrop.