Tuesday, September 1, 2009

Little boxes made of ticky-tacky

When medical supply delivery days collide at the Turnquist house:

And just one of those boxes was trach supplies. I'm still waiting on a box of new trachs, and a box of her formula. All the other boxes are from our wound supply company.

I went a bit overboard with my order because of insurance issues. Basically, since I left my job at the Red Cross in Philly, Jeff and I lost our insurance. I can continue to cover Leah on a month-by-month basis using COBRA for 18 months for the bargain price of $452 a month. Gotta love COBRA. You get to keep the same exact coverage but it's hella expensive & I really only need/use it for her wound supplies. But then again I have to think of it as: $452/month = any and all supplies we need, bearing in mind that just 1 box of 10 4"x5" pieces of a contact layer we use on a daily basis is more than $80 & and that 1 jar of the special cream we use is $20, it works out well.

But anywho, since I didn't know if we'd be able to afford to keep her COBRA coverage for September, I went and ordered tons of stuff while August was still paid for. I made a bonehead move and failed to put the word "rolled" in front of the word "gauze" in my email to our supply contact so now I have a case of square gauze I can't use. Perhaps I'll donate it to the DebRA foundation.

Of course, we have secondary Medicaid insurance for Leah but the supply company we use does not currently have a contract with Leah's specific managed care program under Medicaid, so we're waiting to see if they can work something out and then I'll know COBRA isn't needed. Ah, the fun I have all day dealing with insurance, paperwork, bills, medical supply companies, supply orders and phone calls. Just while typing this blog I got phone calls from 1.) the infant and toddlers program rep, 2.) the overnight nursing staffs' supervisor and 3.) the case manager for Leah's Medicaid.

Speaking of paperwork and red tape, I finally finished and submitted Leah's SSI application. Now I just have to wait for the paperwork to get here and call to schedule an appointment at the Social Security office. So I'll actually get a chance to leave the house for something - but it sure won't be for fun.

At least Leah knows how to relax:

I went to reposition her in her chair last night so I took her blankets off of her to find her doing her typical stretched out starfish pose. She lays like this a lot - I guess it does look darn comfortable. Trying to burp her when she wants to do this is fun. "Light as a feather, stiff as a board".

There's also the 'relaxed starfish' pose, just a slight variation:

And yes, I will soon be putting clothes on the little girl. Fall is a-coming so we gotta get her used to having some clothes on that little body. It was hard to find clothes for her before with just EB, but now we have collar issues to keep in mind because of the trach. So her wardrobe is limited but nevertheless I will find soft, cotton, lace-free, frill-free, applique-free, zipper-free, tag-free, loosely collared, pink, preferably with kittens and bunnies and cutesy stereotypical baby-girl clothing for her.


Patrice said...

That little pose is the cutest thing I've ever seen. She is ADORABLE! Hope we get to meet soon!

Anonymous said...

Dear Meghann & Jeff,

My neighbor is a super steamstress and when she heard Leah's story the first thing she asked was what could she do. She offered to make her some clothes. I'll start looking for soft material and maybe Lynn can come up with a pattern from her collection. Just let me know if one type of material is better than another. I'm thinking a really soft cotten. We'll do what we can. Love you guys, Aunt Penny

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