Saturday, March 17, 2007

St. Patty's Day Ramblings

Happy St. Patrick's Day!

The girls are dressed in the green garb, and ready for tonight's party. They're looking forward to meeting a couple of little girl friends, Shilo and Cecilia, who we haven't had a chance to meet before. Holland and Eden are always up for a good party. The more people, the better, in their eyes! They absolutely love playing with other kids.

I just got done writing out the bills. We are still paying through the nose for Holland and Eden's orthotics. You seriously wouldn't believe how much they cost. Holland's ONE orthotic is costing us over $600.00, and it doesn't even fit her anymore. We paid $100 for a pair of JumpStarts, and they work better for her anyway. Ugh. I can't believe how piss poor our orthotics coverage is.

On the bright side, I checked into our coverage for Durable Medical Equipment, and it is great. We are in the process of ordering Eden her very own Pony Walker, and it's going to be covered 100%. Pam, our PT, told us this week that she needs the borrowed Pony back. I started panicking because there is no way we can even go ONE day without it. Eden would be so upset.

Hmmmm... What else??? Oh, today Holland has already said "I don't want to" three times. What? Really? How old is she anyway?


I'm leaving for Seattle on Friday morning for our first annual Girl's Weekend. I am meeting four of my best ever junior high school girlfriends there. Jessie lives in Alaska, Lisa in LA, and Donna in exotic Lansing, MI. Amy lives about 6 miles from me and I don't see her as often as I'd like to either. I am very excited. These girls are my "hair posse" and I miss them like crazy all the time!

I am bummed that Lizzie can't go, but it's my fault cause I sent her all the info on email and she didn't get it on time. Now she has to work. Next year I will call, but you all know how much I HATE talking on the phone. I avoid it at all costs. Email is so much cooler, and you're much more likely to get a return email than a phone call:) Of course, don't tell that to all the people I haven't gotten around to returning their email lately. I am a terrible procrastinator at most things, but especially so when it involves making phone calls!

And finally, another shout out for support in our WalkAmerica efforts. Please visit our donation page at www.walkamerica.org/HollandEden to make your contribution. Holland and Eden would not be here today if it weren't for the efforts of the March of Dimes, but more research is needed to help us understand the causes of prematurity, and to improve the quality of care that preemies in the NICU receive. Maybe future efforts and research will lead to a reduction in the life altering disabilities that so many premature infants face. I hope and believe that it will.

5 comments:

Jamie and Jill said...

Happy St. Patty's day! I LOVE Eden's headband......too cute! Enjoy the party!

Anonymous said...

Billie,
You girls behave while you're out there in the wilds of Seattle!!
NOT! :)
I'm so glad you're all getting together, Lisa is really looking forward to it.
Please give her a big hug for me will you? I miss her terribly!
Party on Holly and Edie!!
Love, Jules

Donnie said...

Hey BD, you need to get me the MOD stuff for work!!!

Anonymous said...

Billie,

Have you approached the Shriners for help with Eden's orthotics? I know that if you are accepted, they will provide state of the art stuff for her for free!

Look into it. They will follow Eden all through childhood for sure, and maybe even beyond.

Jennifer said...

Hi--In addition to the Shriner's mentioned, there is also TEFRA coverage, depending on what state you live in. I'm still learning about it (as an early childhood special ed teacher), but it is not income dependent.
What is TEFRA?

Answer: Under Section 134 of the Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA), (P.L.97-248), states have the option to make Medicaid benefits available to children with physical or mental disabilities who would not ordinarily be eligible for Supplemental Security Income (SSI) benefits because of their parent's income or resources are too high. TEFRA allows children who are eligible for institutional services to be cared for in their homes. (They don’t have to be in an institution).