Today we spent our time doing my FAVORITE Christmas tradition…

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And yes, I realize that it’s not yet Thanksgiving.

But, many planets have to align….the weather has to cooperate, Danny can’t be sick, and there can’t be too much snow on the ground.

This year the planets all aligned today….we met the grandparents at the cabin.

:)

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Your favorite Martians have their mountain Christmas tree.

:)

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Danny’s story of our Mito label …

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Laura Marrs:

One of the research assistants I mention here now has her phd and is doing her part to educate the next generation of teachers. I heard from her this morning because one of her students came across a kid with mito and she wanted to share this blog post with them.

Danny turns fifteen on Monday. It’s been almost ten years since that first visit with Dr N. And while we still are searching for the genetic “smoking gun” he has improved so much on the cocktail. I shudder to think of where he might be had I not behaved like a pushy crazy mom.
:)

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Originally posted on lifeonmarrs:

Not everyone is reading all three parts of how we first heard of mitochondrial disease. Here it is all together.

In Losing Danny I spoke of how we first discovered autism.

Click here to read it again…

Now, let’s chat about the first time I heard the words Mitochondrial Disease.

Danny had these funny regressions.

Regression is thrown around a lot in the autism world, to get more therapy, you have to show a skill loss. That’s not what I am talking about here. Danny would literally be able to do a skill one day and then the next have it be gone. It looked like non compliance to us in the beginning, but after a while we would realize that the skill was just gone.

Ok, so how do you prove it to the outside world? In the land of “mom reports”, not much I say is taken seriously…

View original 912 more words

An amazing dinner prepared by even better friends….

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You would not believe the number of times we’ve tried to do get together since mid summer. Something always came up.

Luckily, we have incredibly patient and persistent friends.

Totally worth the wait.

Dinner and wine were spectacular.

But the company was even better.

Thank you Chris and Vicki.

:)

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(That is scallops, crab stuffed mushrooms, grilled venison, and green beans)

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I can’t even begin to tell you how proud I am of my oldest child….

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It was men’s choir concert night.

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My Katie Bear is taking a peer mentoring class as an elective at the high school.

The class she is mentoring in is “men’s choir”.

My heart was just bursting with pride.

My baby, that I was too afraid to bring home from the hospital because I didn’t know how to change a diaper, sees the person under the disability….and cannot believe anyone else can’t see them.

(There’s nothing else to say)