She likes to stand!

Take a look at this!!

My baby is standing.  That's right, standing!

and here.....her big brother is teaching her the finer points about Transformers.....but he did give in and let Zeta's baby play too!

Thanks to funds raised by Team Zeta we were able to purchase the Bantam Sit to Stand.  I cannot put into words what I felt when I saw Zeta stand for the first time.  It opened a whole new world for her and she knew that something was 'different'!  Steve agreed with the enormous feeling of pride, but he said that at the same time it was disheartening that we don't know if we'll ever see her stand on her own.

We've been working to get approval for the Sit to Stand through insurance, but we had already been over six months into the process so we decided to use some of Zeta's funds for the purchase.  So far we're happy that we did!  I understand the idea of 'medical necessity' and a lot of the red tape with insurance, but what the executives behind the desks making all the rules don't realize is the need for quality of life for children like Zeta.  Anything that would IMPROVE her life is something that we need - and we need it like yesterday.

Children like Zeta don't  have the luxury of waiting..... and any moment that can bring and enhance experiences has potentially vast benefits.....which makes me think of other children who don't get the proper medical/other care they need due to dictatorship and partnerships between insurance, companies, and health care systems.  I would consider our family seriously very lucky in this area.  Zeta is covered by private insurance and a medicaid waiver for disabled children.  All of the drama surrounding the current health care legislation and crisis certainly weighs heavily for us on both sides.  There are certainly things that would have had to been done differently had we not had private coverage for Zeta and there are many ways that the medicaid coverage has kicked in to alleviate many of the financial burdens...still would you believe there have been times we've had to pay hundreds of dollars for a certain medication that Zeta needed, but could not get coverage through either party.  Due to her unique make-up Zeta sometimes has some -let's say, different  medical needs.  I've been through trying to wait a day or two for the authorization for payment to go through with the pharmacy before getting the medication but then when we ended up with an emergency admission  a few days later because she had not had proper treatment (the medicine we were waiting on) I decided I would never ' wait' on anything ever again if we there were any way at all that we could help it.  Zeta's nurse and I were discussing the issue of Zeta's everyday medications.  We estimate the cost to be close to $10,000 a month.  Yes, you read that correctly - TEN THOUSAND dollars per month (no that's not out of pocket - what person could afford that?).  Sounds crazy doesn't it?  But I can't help thinking of all the babies....all the children that are uninsured, under-insured- or who have parents who haven't learned to navigate the system or who just don't care.  It's heartbreaking.  We're very fortunate in the fact that we've been able to be with Zeta through every admission and am able to help care for her at home.  We're fortunate that we've developed strong relationships with all of her doctors, nurses, and therapists.  We're fortunate that we have PSA and the good people at Hands of Hope.  We're fortunate that we have the support to make this a reality and that we are able to give Zeta the best life possible. None if it would be possible on our own strength alone.  God is deserving- first and foremost...then our families.....our medical families....and all of our friends and the network of Team Zeta!


Well, so much for a short post - I thought maybe I would move toward making my posts actually more 'blog' like - whatever that means....you know a short thought for the day everyday?  I don't think that's possible for me.  I get on a topic and just keep going and going...and going.... so maybe I'll stick to my 'short story' versions.  For example, this post was intended to be a snippet of Zeta in her stander and it turned into me getting onto my insurance soap box (at least I didn't get too carried away!)  I'll step down now....and we'll see if I get any better with the short blogs or stick to the story stories!

And the LORD said, Behold, there is a place by me, and you shall stand on the rock.

Exodus 33:21