Before last year, I had never
stepped foot into a Social Security office. I naively turned the other cheek,
ignorantly associating Social Security with poverty, elderly and/or ‘needy’.
Humility is a funny thing.
Medicaid Office
How humble we are now, as I have logged many
hours amongst those in line for food stamps and monthly checks. We are ALL
‘needy’ for one thing or another. I'm just begging for medical care for my son.
Team Richter doesn’t stop at Social
Security, we visit the Department of Social Services, Department of Health and
Human Services, Medicaid offices, Easter Seals, Council for Children’s’ Rights,
Disability Centers…. The list is long. We appeal (countless times) for
disability. We spend hours on the phone with Blue Cross Blue Shield. We beg for
therapies at Development Offices. We plead for letters of necessities from our
specialists. We apply for grants. We research. We talk with other with
families. All in an effort to get the care we need for our son to have the best
quality of life.
According to NC state and federal policy, if
you make above poverty level income, Shaw can not qualify for disability or
Medicaid - regardless of infinite doctor's requests, lifetime diagnosis and
Specialist letters. Thank God, my husband and I are frugal, savers and tenacious because
when you take into account abruptly (and not by choice) going from two incomes
to one, coupled with exorbitant doctor bills and critical therapies necessary
for our son's development, the stress of fighting these agencies is
overwhelming. How can you put a
price on your son’s development?
Well, we’re still fighting and we don’t have
the answers; however, we are working on trying to create something that may
help other families following in our footsteps and alleviate (or at least subsidize) the
financial stress accompanied with a medically-fragile child. We still are
ironing out the details, but here is a first glimpse at Bee Mighty.
In other big news, Baby Shaw is scheduled for surgery
this Thursday. They will be inserting tubes, removing his adenoids and
addressing the cysts on his windpipe. Since they will be working on his airway,
he will be required to stay overnight to monitor his breathing. Our hope is if
the cysts are removed, minimal scar tissue forms that could further obstruct
Shaw’s airway. Hopefully, this will improve Shaw’s hearing, breathing and ability to talk.
Lastly in Richter updates, we're looking forward to logging some time in Hilton Head this summer. We’ll be focusing
on aqua therapy (in the pool!), which is a refreshing reprieve for Nash who is
dragged to doctor offices multiple times a week. He won’t even realize we’re ‘working’ with Shaw!
Nash found his life jacket yesterday and says, “I
ready for the beach, Momma.” (He wants
to take all of his toys to the beach, but leave his brother).
Prayers for Thursday appreciated.
3 comments:
Keeping Shaw and all of Team Richter in our prayers. Always. Bee Mighty! I'm looking forward to seeing how it evolves and am happy to offer my assistance if needed.
Thursday is Jean Baptiste's birthday but all our thoughts will be for Shaw and the Richter family.
Love and kisses from all of us
Daniele, Patrick, JB and Laurina
Thinking about ya'll today - hope the surgery goes super fast and without any bumps!!! Holler if you need anything....we just saw Christie for the last time, Ryan has officially aged out of the early intervention program!
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