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

Thursday, October 4, 2012

Button Button, Who Has A Button?

Remember this story, right HERE?

August 21st is when I received this interesting "thing" added to my belly.

The tummy tube was put in, and while it has made it easier to take my meds, it has been a nuisance. A 9-inch tube, with the last few inches being wider to intake the meds. 

It sometimes gets caught and sometimes accidently pulled - and either way it can hurt.

So today that changes!

Today we take a road trip, to Macon, to the surgeon's office. The PA will replace the tube with what they call a button. No more tube outside my tummy.

Please remember us in your prayers as we travel and for me for an extra dose of bravery (Doctor's offices are not my favorite place to visit).

Until the update . . .

Are you seeing fuzzy? Do you see dots? It is just the photo. Fuzzy picture, but what fun a bunch of sticker dots can be...


Fall of 2007

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