Born @ 27 weeks
2lbs 7oz

Sunday, April 15, 2012

Moonlighting for Therapy

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.

 Friday, April 13th 3pm
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. 

Thanks to Melinda Radcliff, from Radcliff Designs for her talent and time creating our logo!!   

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.

Otherwise, he is doing FABULOUS and gets cuter by the minute.

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.


Heather said...

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.

Anonymous said...

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

Amy said...

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!