Curt's Corner: November 2012

What is Leigh's?

What is Leigh's Syndrone? Our Journey Home blog explains it so well: Imagine a major city with half it’s power plant shut down, at best this would cause a major black out. Now imagine your body working only to one half, the brain is impaired, vision is dim, muscles twitch and you are weak and your muscles are too fatigued to walk, crawl, or write. Your heart is weakened and you are not able to digest your food. For a large number of people, especially children, this is a fatal disease. Leigh’s Disease is one of many recognized Mitochondrial Diseases. Leigh’s is a progressive neurometabolic disorder with a general onset in infancy or childhood, often after a viral infection, but can also occur in teens and adults. It is characterized on MRI by visible necrotizing (dead or dying tissue) lesions on the brain, particularly in the midbrain and brainstem. The child often appears normal at birth but typically begins displaying symptoms within a few months to two years of age, although the timing may be much earlier or later. Initial symptoms can include the loss of basic skills such as sucking, head control, walking and talking. These may be accompanied by other problems such as irritability, loss of appetite, vomiting and seizures. There may be periods of sharp decline or temporary restoration of some functions. Eventually, the child may also have heart, kidney, vision, and breathing complications. One estimate of the incidence of Leigh’s is one in every 77,000 births, however this may be an underestimate as mitochondrial diseases tend to be under-diagnosed or misdiagnosed. There is no cure for Leigh’s Disease. Prognosis is poor, depending on the defect individuals typically live anywhere from a few months, to a few years, to their mid-teens

Monday, November 19, 2012

I Had a BIRTHDAY!

Bet you can't guess where??

Chuck E Cheeeeeese!!!!

Cheesing for the camera....

And so was Nannie behind her camera...

My friends celebrated with me. Games and Pizza and Strawberry Cake!

And Gifts!

And of course, GAMES!!!!

The ticket count? 1300!!!!

My daddy is the ultimate game buddy and that is my Annie watching us meet the challenge.

More friends . . .

More cheesing Chuck E. Cheese!

A long time ago, when I was kid (because, you know I am seven now, right?!?!) I loved Larry Boy from Veggie Tales. I knew the songs and videos. All of it. And when I was being Larry Boy, I always ate peas. Green English Peas. They recharged my batteries so I could be fly!

The neat thing is, now, I have this super duper friend: Larry.

And Larry is like the Larry Boy now. I am Captain America and this is my friend Larry Boy:

And this was the Best Day Ever!!

Tuesday, November 13, 2012

Song Writers in the Round

Fundraisers sure can have a lot of people!

Pappy said about 400 came out to hear the local songwriters sing. I think he is right!

Sure were a lot of happy woman shopping the silent auction, and a few guys for the hunts that were offered.

And on top of all the grown up stuff for auction, someone sent along a surprise donation for the silent auction. A little white bundle of fur! An English Setter and he sure made it easier to be around so many grown people - they seemed rather big.

I enjoyed the songs,

but the pup was what I really enjoyed (I named his snowball).

Everyone chatted and listened to the music. Young and older, old friends and new friends and very new friends.

Then a few items were auctioned off. A grill and my side kick for the evening - snowball.

The grill part was kind of boring. But snowball became interesting. The bids went back and forth between two men. These two men:

It's a little blurry, but the gentlemen sitting and the one standing in the middle went back and forth and back forth. Finally one smiled and motioned to let the other win the bid. Some knew, but many did not, one was the dad and one was the son. And what no one knew till a few minutes later, they did not want snowball! They had a bidding battle to give me Snowball in the end. I now have Snowball all the time!!

The fundraiser was a success and the music was good and the company was better!! My family is loved by a great community!!

And after a few days, I realized my cousin seemed to like snowball too!

A trip to the sunflower patch and a fall pose with Snowball.