Wednesday, February 22, 2012


Scream of relief, of elation, of agony, don't know which one fits. I am so so so tired of dealing with insurance companies, you cannot even imagine what I have to go through. It is endless boondoggling and befuddling agony.
I am pretty good at it though, and yet despite it not being my true calling, I have a real knack for it, for being an advocate, for fighting the system, for dealing with all this nonsense.

I am now fighting claims that date back to July 2011!

The amount I am fighting for is: 1380 dollars.

I know it is not a huge amount, but it is the principle. We pay insurance every month, and they need to give us back what is due!

So they needed the W-9 form, which was faxed three times, but they were unable to process it because they were lacking sufficient information. Now they need the license number, and it has taken them 8 months to tell me that they are unable to process my request. Welcome to the Kafka Land of Special Needs!

Today, I am proud of myself, I told the woman behind the phone that I gave her One week to process the darn W-9 form or I would have to go up the ladder to the California State Insurance Commission, to see what they can do to help us....Let there be blood...

Anyway, I feel stressed out, what else is new?

Last week we went up to Shriners for Zoé to undergo a "Full Body Motion Analysis", the ladies in charge of the study were wonderful, warm, caring and understanding, like all the people at Shriners for that matter.
They needed to put a lot of little camera probes on Zoé's body and for it to work took a lot of of ingenuity and patience.
We played princess, we played Simon Says:"Walk in a straight line without stopping..." imagine my Zoé, the constant butterfly standing still while they calibered the cameras?
We came up with the idea that the metal plate she was standing on was Jasmine and Aladdin's carpet, then, she had to walk straight and without stopping once.
I used the tempting "Chocolate ice-cream" carrot, so she would do as she was told...
The ladies were about to give up, and I was devastated, for I wanted the study done, in the end we managed!
Zoé then got to see her body in 3-D, as little connected dots walking forward, backwards, etc.
She loved it.
We now have a baseline to see how Zoé's body is structurally speaking, which muscles she fires and which ones she doesn't use.
We will see the neurologist in May for an update.

As far as school goes, Zoé still needs to work on settling down. I don't know whether it is because she is in pain or uncomfortable sitting down, but she is constantly moving around the classroom, fidgeting, etc. Is that typical of Steinert (MMD) or not, I don't know.

On the poop front, nothing much. my constant frustration, and sadness. But what can I do?
I have tried everything: the reward, the sticker chart, TV, Videos, etc. To no avail. I just have to let go.
Zoé keeps telling me that she'll be "clean" when she is 5. We shall see, but 5 seems so far away. But she has incredible volition, so I wouldn't be surprised if on her 5th birthday, she'll decide to be potty trained!

As far as other therapies go:
Speech, had to be changed, for Zoé suddenly became bored. So now they make it slightly more interactive instead of having her repeat 50 times bilabial words.
Swim therapy is back in session and Zoé loves it.
Horse therapies are also terrific.
Physical therapy: Zoé has made tremendous progress, she can now step down from sidewalks.
OT: we need to work on dressing, which Zoé doesn't do that well, because she's used to me doing it all. I have to learn to let her do it, but when we are in a rush, it's easier for me to run around the house, making a hot lunch, packing her lunch bag, dressing her, brushing her teeth. I think we'd need an hour and a half if she were to do it all by herself.

As far as social skills go, we are going to have Zoé assessed by a developmental specialist, for she lacks social skills. She told her French teachers that she "prefers to stay with adults in the classroom at recess because kids are boring!!" She also has a hard time remembering names of friends, but if you gave her 55 princesses she'd know their names by heart within minutes!
Zoé has an incredible memory, but I think it is truly selective: songs, letters, cards, etc.
voila for now, dear readers.

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