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

Sunday, September 16, 2012

G-Tube

On August 21st I had surgery and I now have a G-tube.

A bear with a button from my mommy's friend in Seattle.
A blanket from the hospital
Another bear and blanket from children visiting from their church
And visting friends and family...kinda like a party


 (silly cousins!)

And more goodies (and there was a whoopie cushion too!)


I had lots of questions before the surgery, and I really did not want the nurses sticking me with any more needles. They put a tube in my nose, which meant I did not have to taste the gross the medicine, but having a tube put in your nose is not fun. But when I got sick during the night, it came out. 

Two days later I went in to surgery.

After waking up from surgery,  I was hurting bad. But after a few days, and I started healing, that got better. I now have a tube sticking out of my belly and it is healing well. The doctor said that in three weeks they will replace the tube with a button.

I am feeling a little embarrassed and a little different. I don't think anyone else I know has one of these. And so far I cannot sit up straight very long. Good thing my chair leans back!

Another good thing? I can eat ice cream or chicken fingers or whipped cream, but NO MORE TASTING THAT NASTY VITAMIN COCKTAIL!

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