I Had a BIRTHDAY!

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!!

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.

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...

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:

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 . . .

See? SMILES

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

My Pappy

Our many many friends!!

My Annie!

More Smiles!!

Silly!

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

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

In Hopes of a Cure

The story of our fight with mitochondria, and hope for a cure, was featured on one of our local news stations tonight . . . WALB.com, Albany News, Weather, Sports

The interview was about 45 minutes, they cut alot.

But here is a Mitochondria "did you know"

 Mitochondrial diseases are difficult to diagnose. Referral to an appropriate research center is critical. If experienced physicians are involved, however, diagnoses can be made through a combination of clinical observations, laboratory evaluation, cerebral imaging, and muscle biopsies. Despite these advances, many cases do not receive ...a specific diagnosis. Most hospitals do not have a metabolic laboratory and therefore can run only the most basic tests. However, most hospitals will send specimens to any laboratory in the country. Not all laboratory tests are required for all patients, and your physician may decide that some of these tests are not necessary. In addition, a single blood or urine lab test with normal results does not rule out a mitochondrial disease. This is true for organic acids, lactic acid, carnitine analysis and amino acid analysis. Even muscle biopsies are not 100% accurate.

Thank you to the UMDF for the info above.
To learn more go to their website umdf.org.

It took us five months to get a diagnosis... It takes some even longer!

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.

Mitochondria Awareness Week

Tommorrow wraps up the Mitochondria Awareness Week, as far as the "national" spotlight goes.  We know that this, unfortunately, is not just a one week affair. This needs attention everyday of every week.  Dedication of medical research. A cure to be found.

The community and family continue to rally around our family and work to raise the money to be a part of an upcoming drug trial of EPI-743. It looks like all bets are off on the trial in Ohio. California is the next destination. Sounds like a good spot!

Many more families are striving to be a part of this study also.  CNN ran a story today featuring another family fighting this fight and heading to a drug study.  Check it out HERE...

And don't forget . . .

Energize me even after this week!

Drug Trials

Drug Trials have been applied to and we are waiting...

While we wait, we are working out arrangements and plans to travel to Ohio or California, and for that, additional funds will be needed.  Here are the ways the community is helping us ready for the studies:

Pancake Breakfast

Sunday, October 7th

8:00 - 1:00 p.m.



  All proceeds will go to Curt in  some way - whether that is for the drug trial/living expense, or his current medical and medicine bills.  Even with insurance, the expenses are not all covered.

Class members will be selling tickets on Sunday in the foyer,

or you can get them in the office during the week.  

229-436-6336

Tickets are $5.00 

Boiled Peanuts

Michaels Breakfast and BBQ

Gillionville Road, Albany

Go by and purchase a bag of boiled peanuts. The proceeds from each bag go 100% to Curt's fundraising

Wallets

The Shoe Box

Dawson Road, Albany

The Shoe Box is selling wallets and the proceeds from the sales will go towards Curt's medical expenses. Need a wallet? Someone's Birthday coming up? Christmas Gift?

Donations

AB&T established an account for Curt.

Donations can be made:

AB&T National Bank

 P.O. Drawer 71269

 Albany, Ga. 31708-1269

Attention: Nita Gaines

Thank you all for your sweet blessings

 and prayers. . .

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!