Wednesday, February 03, 2010

January was full of surprises (#SMA)

I can't believe this month is over. I also can't believe how hard it is to consistently blog, so Good On Ya, mates, that have the personality and tenacity to keep your audience stimulated.

We've had a whirlwind couple of months with an incredible amount of emotional and intellectual stock invested in Emily's well-being. Let's just cut the story short and say that I hate mankind. We suck. Our ability to make extremely complicated systems that cripple the GOOD in this world gives me a perpetual need to vomit. It sucks that we have to FIGHT for good, while the bad just has to exist to screw things up.

Now that I have that out of the way -- this month has been spent battling for Emily's life -- but what's new, right? After MANY phone calls, emails, faxes, text messages, appeals, calling people on lies, recalling and recording Emily's history, and so on.....

Emily has been accepted onto the Maryland Model Waiver for 8 "global hrs" of nursing, per day, 7 days/week. - which means any time of day! And, CareFirst has agreed to cover 12 global hrs until she has transitioned onto the Waiver, until 2/26.

I have to say -- I thought I would faint or something when I imagined getting news like this. But to be honest, after my small victory breath, but my neck and back muscles remained rigid and my mind turned to the other things that haven't been settled - as well as the unexpected surprises that we have yet to face.

HOWEVER, getting Emily into the Medicaid Model Waiver program is a big win for us. We met with our new coordinator yesterday and it was so incredible to hear that someone is going to help us with the constancy of Emily's plan of care, and fight on our behalf to get the things we need for Emily.

The nursing battle isn't over yet. I have also appealed the Maryland Insurance Administration's determination that b/c Spinal Muscular Atrophy (SMA) is terminal, they will not enforce services such as nursing. Insane. So, out of principle, I will continue to fight these issues and hope to help prepare a more friendly state for other families in situations like ours.... more on this point at a later date.... we have some buns in the oven, so to speak.

Emily's power chair is also supposed to be delivered in the very near future. CareFirst came through on that one and Emily is getting a very appropriate chair for her needs! This will be great for her by giving her some ability to exercise more and more independence. I can't wait to post video of her zooming around. :)

5 comments:

Mary said...

So glad to hear all the hard work you and Diana put in is finally paying off. Congrats on the victories!

Lucy and Ethel said...

I agree - sounds like your diligence and relentless pursuit has had an impact :)

Great news!!!

'Lucy'

erik_lyt said...

Nate and Diana - How exciting!!!! Praise God for these 2 things (the care and the chair)....finally! I will continue to pray for your family - let me know any other specifics, Diana. Love, Lysa Lyt

Disciples of Jesus said...

Nathan, Diana, Annabelle, and Emily...we love you all so much! May God continue to renew your strength, quicken your minds, and fill you with resolve to protect the weak and oppressed in this world. May He offer you rest and peace in Him. God is truly with you...it is so very evident.

CureSMA4Stella said...

So sorry you had to work so hard to get it all but we are so proud of you!! You guys are awesome!!