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


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.

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.


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...

Thursday, October 11, 2012

Song Writers In The Round

We live in a wonderful community!

The next fundraiser is October 25th. Local Artists are coming together to play the songs they have written. What a group of amazing talent.

Below are a couple clips of a few of the songwriters that will be singing on the 25th:

That was Jodi Mann. She has a fun song about a beach in the backyard too!

Evan Barber and the Bo Henry Band:

Sunday, October 7, 2012

Sunny With A Chance Of Pancakes!!

Today was the Pancake Breakfast Fundraiser that Annie and Pappy's Sunday School Class hosted for me.
Lots of flapjacks were flipped and lots of love and smiles too!

The griddle is hot! (and the batter must be good)

Did someone say Bacon??

Waiting for the first wave of pancake eaters . . .


Coffee Anyone?? Thank you Mr. Dan . . .

My Pappy

Our many many friends!!

My Annie!

More Smiles!!


That pancake holds the butter and the syrup all in the center!!

Miss Sue had just stood up and was caught, for that split second, without her contagious smile!!
She is a mastermind of pancake breakfasts!!

Aunt Cindy

Sweet friends - the Dilts

"If food dropped like rain from the sky, wouldn't it be marvelous! Or would it? It could, after all, be messy. And you'd have no choice. What if you didn't like what fell?
Or what if too much came?
Have you ever thought of what it might be like
to be squashed flat by a pancake?"

Cloudy With A Chance Of Meatballs

Thursday, October 4, 2012

Whose Got the Button? I've Got The Button

We made our round trip to Children's Hospital Outpatient Services (CHOP).  105 miles round trip.

But I got the button!

And I was excited! See:

The PA said is wasn't going to hurt. But it seems she was a little wrong.  That smile above disappeared. 
The button is in place, but the area is now tender and puffy and red. We were given a special cream for the area that should help. If not, the words "silver nitrate" were used. I don't think I like the sounds of that. 

Tube versus Button? Button wins!

Prayers for our Journey
~ The site of the button will heal with speed (no silver nitrate)
~ Acceptance to the Drug Program/Trials
~ God's provision. Both financial and with wisdom for each day
~ Day's full of laughter and joy
~ God's comfort and peace in the trying moments

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