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 25, 2012

The Three R's

Road Trip, Road Trip, and Report Cards . . .

The road trips were actually doctor's visits, but a two hour drive there and back makes it a road trip.

But before anything about that, first quarter report cards came out.

I ROCKED!!

A couple 100’s. A couple 99’s; a 97; a 96; and a 95.

How ‘bout them grades?!?

Now for the Doctor visits.
Mon, Oct 8, we went to see the neurologist, Dr. Trasmonte. The 2nd MRI showed more lesions – just a bit more. Momma said maybe a ¼ larger than the 1st MRI.

The Doctor has prescribed a new medicine that should help with my stiffness and give me more flixibility. So far it has not kicked in. Maybe tomorrow.

Our second trip was to the other Doctor.

I gained 5 pounds!!

The button helps. We are all getting the hang of it. Mommy and Daddy and I have it down, now Annie is getting use to it too. I got to teach her how to give my medicine to me with the button. The crushed pills stopped up the tube. Coca cola did the trick, cleared it out!

One more fun thing... whiffle ball in Annie's bedroom. She'd pitch, I'd hit, she'd try to catch.  She kinda got scared and decided to add a face mask!



I can line drive a whiffle ball!

Tonight The Songwriters in the Round is at 7pm at Merry Acres' Ball Room. The proceeds will go into the benefit account at AB&T to help pay my way to a drug trial. There will be songwriters from several local bands talking to us, playing their songs, heavy appetizers snacks and a silent auction full of wonderful items that you are gonna want; vacations, original art, hunts, temperapedic pillows, spa days and more...
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