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

Friday, September 28, 2012

All In A Week

A lot can be fit in a few days of time.  I have had Annie and Pappy time this week and fun times with them. Mito joined us in it,and I would rather it not, but we were able to exercise several virtues to get around its presence.

PERSEVERANCE


Have you ever just wanted one something special to eat? That was Annie and me. I wanted
Mac n Cheese...my chair did not want to get me close enough to the stove, but I WANTED to help.   I wasn't quite ready to be up too straight (that has gotten better). So the tummy tube and chair offered us the obstacles. And Annie and I made it happen - we made a good team.  Mac n cheese was mine and then a game of Break the Ice!


COURAGEOUS

My Annie says I am courageous. I have gotten use to school and my friends (I have lots of friends at school) and I love going, but sometimes going out to other places kinda bothers me. The way my muscles freeze up, I get stiff and straighten and it is not comfortable. And I don't know when it will happen or where we will be.

Do you have a favorite place to go with favorite people? For Annie and Pappy and me, that would be
Saturday nights at The Back Porch (steaks, chops, chicken...good ol' eatin'). While I thought we should stay at home, Annie and Pappy talked me in to a trip to the Back Porch. And I had FUN!


Our dinners out - My Annie, My Pappy and me- go waaaayyyy back (my first pork chop??)

BRAVERY

On the way to dinner, my muscles siezed up some. I think Pappy noticed my face clench and saw that I had gritted my teeth. But I was brave through  it, and when it eased up, we giggled and laughed at the fun we had later. I ate steak, green beans and peach slices. Another favorite. My Annie says I am brave, a very brave soul.


GIGGLES

Annie had a fly in her ice in her drink!! She didn't seem to like having a fly in her ice! But, shhhhhhh....don't tell her it was fake and I put it there...


GRATITUDE

And then today...




I got a special surprise! Delivered by  special visitors from one of our church's UMW Circles ...

My very own IPad!!

This is for use with Occupation Therapy.  My fingers are not able to hold pencils like they use to. Now with the IPad, instead of using pens and pencils and paper, I will be able to do my work using it (I am a great speller, by the way). But don't think I won't play games on it too! I love video games. . .

The sweet ladies contacted a foundation that Paula Deen has, and I was selected for the IPad. They kept the surprise a secret from even my mommy!

And Dawnie? You can still come visit, even though I have an IPad now, too.  And it's ok if you forget your IPad, I can share mine with you!



... a very VERY large amount here!!

Thank you Elaine Bennet, Cindy Lawerence, Patti Howze, Roseanne Lewis, Susan Green, Jodi Mann, Aunt Peggy and all the other ladies for loving me and reaching out!

Thank you Paula Deen Foundation.





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