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1 P-36 Deletion Sundrome
1 P36 Deletion Syndrome
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January 2014


The grand babies loved the froggie cookies!

And my (Ga-Ga) work here is done~

My Prince Charming eating a frog cookie!

Our littlest Princess loved them too!

Why, of course I wear my pink tutu bowling!  Don't you??  Actually, Clara Jane calls them, "choo-choo trains"---glad I'm keeping record of that.  I love going down, child language, memory lane with my kids~


Our family had a great time taking all of our little ones bowling Saturday for Eddie Jett's 6th Birthday.  If you haven't taken your preschoolers to the bowling alley go!

They had a blast, and even Annabelle, who's just a year old, was able to tip a ball off of the ramp and watch it roll down the lane and knock down some pins.

There was a video arcade, and music as well.  What's not to love!

Since music is such incredible therapy for children with special needs, we got Eddie Jett his very own boom box for his room, and Uncle Forrest bought him his first Pantera CD. 

Happy 6th Birthday Eddie Jett!

Papa and the birthday boy waiting on a strike~

Even little Annabelle was able to help slide a bowling ball down the ramp and knock down some pins---such a fun outing for the kiddos.

Eddie Jett is always mesmerized by birthday candles--I'm always mesmerized by the promise of chocolate cak



Who had more fun at the arcade 
   in the bowling alley?  Hmmm?


Our little Landon figuring up the mathematical equation to help knock down his 7-10 split.  We were playing outside later that day, and Landon was rolling his truck down his Little Tykes slide.  He turned to me and said. "Ga-Ga...that's INERTIA---and there's also a sling shot effect!"

I sat dumfounded in my lawn chair for a few seconds...and then goggled inertia on the      down low---he was correct!  I need to brush up on my science pronto.


We're celebrating our Eddie Jett's birthday tomorrow at the bowling alley, and I wanted to make something unique for his special day.  He was over the moon for the white candy coating dipped Oreo snowman---as in, he ate six of them at one sitting!

I found this recipe on Pinterest for almond bark dipped Oreo froggies, and knew this was the one.  I think they'll make our precious 6 year old smile.  And I'm going to let him eat as many as he wants---he needs some more meat on his little bones.  Can't wait to hit the bowling alley for the big party!

Cookies with personality!  Ribit!!

I love how each one came out a bit different.  The one on the left is a girl, and the one on the right is a boy :) ---I checked~

I used vanilla Candy Quick---you melt it in a double boiler and dip your pretzels and Oreos, placing the pretzels down first, and then the Oreos on top to adhere.

I picked up Trolli Sour Gummie Crawlers and just cut the pink tips off for the frogs tongue, and promptly proceeded to eat the remainder of the candy worm---I love those things.  Walmart had white Sixlets in the cake decorating supply isle that were perfect for the eyes.  I melted chocolate chips with a bit of butter and, (get this) used a CLEAN Q-tip to dot the melted chocolate on the white candies for the pupil of the eyes, which made each little frog just come alive with expression.  These were so much fun to make!  



I came across a site as I surfed the internet this morning, as I often do, searching for special needs sites that support children with needs, as we have our Eddie Jett angel who has 1P36 Deletion Syndrome.

To my delight and surprise, there was a beautiful photo of my cousin with her amazing special needs daughter, Zoe (The Mighty Z) on the first page of the web site! 

The site requests notes from other families with children that have special needs. Below is the note I sent to them.  

Good morning!

I just found myself, as I do so often, surfing through special needs sites.  One in particular was the "Variety" organization that I heard of at our local Cinemark Theater during the movie and advertisement trailers.

I spotted your site, which had a to-the-point name and clicked on.  To my utter surprise and delight, there was a portrait of a beautiful family enjoying a day at an amusement park, and the amazing girl being featured was none other than my sweet cousin's daughter, The MIghty Z!! What a small (internet) world!

My family also has a precious special needs angel---my very first grand child, my daughter Skylar's son, Eddie Jett. 

Eddie Jett has 1P36 Deletion Syndrome.  Soon after he was born he was rushed to the intensive care unit, as he was struggling to breath. He was fitted with a G-tube to help him eat, because he could not nurse.  All three of my children were born extremely healthy, and grew up to be beauty queens, Valedictorians, and rock stars---seriously, my son opened for KISS in Stockholm, Sweden at the ripe old age of 15 years old as the lead singer/guitarist for a teen MTV--Capitol Record, rock band!

I never in my wildest dreams, or nightmares, thought I would have anything but healthy, perfect babies in our family, and when Eddie Jett was born it was heartbreaking.  Doctors couldn't even diagnose his issues, so was sent home with my young daughter after a month in the Nic-U.  We were left with a million unanswered questions. 

After quite a few midnight cries, more out of fear and exhaustion than pity, my daughter and I bucked up, tightened the girth on our saddles and jumped on for a wild, unpredictable ride into the unknown.

I stepped in as Skylar's wing-man, and became a hands on Ga-Ga.  We took our Eddie Jett to doctor after doctor, only to be passed off from office to office---specialist to specialist, as we continued to just maintain Eddie Jett's life by siphoning nutrients through a tube into his tiny belly.  He didn't cry, coo, smile, or interact with us until he was over 3 months old.  He was a silent, expressionless, but most precious infant. 

I'll never forget standing at the check out line at Wal-mart when my cell phone rang.  It was Skylar.  She was weeping and yelling as she let me know that Eddie Jett had  started CRYING that day!  Yes, everyone within an ear shot of me heard this crazy woman shouting, "HE CRIED!!! OH MY GOSH!!  HE CRIED!  Skylar, that is AMAZZZZING!!  Praise God!!!  He CRIED---yipppeee!!" 

Yep, weird situations like this one happen a lot when you have a special needs angel.  You celebrate the boulders that seem like tiny milestones to those with healthy children.

After much research, and finally a trip to a genealogist in Tulsa, Eddie Jett was given the grave, extremely rare diagnosis of 1P36 Deletion Syndrome.  The internet, and Google became our worst enemy.  Genes aren't something you can just "fix."  You can't regenerate the tips of the 1P36 our baby was missing.  You don't want to hear about the mortality rate, or bleak symptoms and deficits that come hand in hand much of the time with 1P36. The heart problems, the leukemia, the wheelchairs, the permanent feeding tubes, etc., etc.

Doctors didn't think Eddie Jett would ever eat on his own---a blizzard hit Oklahoma when Eddie Jett was 2 years old.  He pulled his Mic-Key button out, it was lost, and my daughter couldn't even get out of her drive way to get him to the hospital to replace it.  She placed a tea towel over the hole in Eddie Jett's little belly, and he began drinking and eating soft foods orally that week, with my daughters unwavering dedication and courage to her special needs son.  Docs didn't think he would ever walk.  He took his first steps at 3 years old in my living room as we enticed him with his  favorite obsession...popcorn.  Of course, he would never run---Oh yes he is!  He is trucking along in his precious "ET"-ish gate, and keeps up with his toddler cousins now!  He is not suppose to ever be able to speak, but believe me, we've worked and worked with  him, and he can say Mama, and Ga-Ga, as well as a few other select words in his own, Eddie Jett way.  But, he could have called me Mud, and I would have said, "Yes!!! My name is Mud!!

Eddie Jett turns 6 years old this weekend.  He has inspired each and every person in our family---even his uncle rock star. They are very tight, as Eddie Jett is a nut for loud, heavy music.  His favorite song, is one that his Uncle Forrest recorded called, "Sweet Goodbye."  One of Eddie Jett's favorite things is to get in his car seat, I  roll down the windows, and play it loud as the wind whips through his epic, blonde curls.  He even sings along with the chorus---his cue word is "Goodbye."  He swings his head from side to side, lifts his fingers in an orchestra conducting manner, and sings the word over and over with the CD with the hugest, life-is-grand smile on his handsome face.

Oh how we love our Eddie Jett.  God sent him to our family, and we would never be the same.  Even though I've always considered us to be humanitarians, and lovers, Eddie Jett has taught us so much more about humility, patients, and unconditional love than we could have ever imagined possible.  If I'm ever having a bad day, I can promise that just the sight of Eddie Jett's little school picture (he's now in Coweta's special needs class---another milestone) that's hanging on my fridge, makes my heart soar, and I cannot help but to smile from ear to ear!

Thank you for letting me share our story.  Our family is very blessed to have our Mighty Z, and Eddie Jett the Rock Star!  It can be scary at times, dealing with the medical issues, and frustrating when we don't get the answers we feel we need in a timely manner, but on those daunting days, we get in our car, turn up the music, roll down the windows and just sing along with our beautiful, inspirational song bird, Eddie Jett ~~

Much love,
Jody French


Is it just me or are little, chunky toddler, tennis shoes just the most adorable things ever!  I want to save them and dangle them off of my key chain, (or maybe make refrigerator magnets out of them).

Annabelle's kicks!  She was eating a brownie at the table with the big kids, thus the chocolate crumbs at her cute little feet.

Landon completed is into his second week of pre-school, so Ga-Ga had to make him a little pie tin of sprinkle brownies for an after school snack. 

Had my girls bring the kiddos by for a drop in visit today.  Of course, I had to make sure they had a little something chocolate.

Clara Jane is eating her Roy's chicken first...she slept through lunch time.  If you ever come through Coweta, be sure to stop by Roy's Chicken for the best boneless chicken you've ever had!!  People come from all over to indulge in the fried, boneless, poultry bites~~


The musical guest on, "Good Morning America" this morning was, A Great Big World."

Not much can provoke such profound thoughts and feelings in my groggy brain at 8:30 a.m. before I've had my coffee, but this group---this song...BINGO!

"Say Something."  A simple melody, heartfelt line of lyrics, gorgeous voices in  harmony.  A song like this is special.  I will keep this one in my song memory bank.


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A Great Big World & Christina Aguilera - Say Something
Download on iTunes: on Google Play: Download on Amazon:


I'm super excited about the Seattle Seahawks win this weekend.  Alvin Bailey, rookie lineman for the Seahawks, helped pave the way for Marshawn Lynch with a key block that resulted in a 40-yard touchdown run.  He is also the son of the principle of Coweta IGC where I substitute teach.  He's an Oklahoma boy, who played for Broken Arrow, Oklahoma in high school.

Mrs. Bailey was so excited to be able to attend the game.  When I spoke with her Friday, she let me know that her son, Alvin, was making detailed plans for her trip.  He was thrilled to be able to fly his mama into town to spend time with her before the critical championship game.  Mrs. Bailey was just glowing with pride.  How honored she was that Alvin was on the team even though she told me he didn't play much at the rookie level. 

I can bet she added to the super sonic noise, that only Seahawks fans can rally, as her son stepped into the game for over 12 snaps, and played a key roll in their victory. Being a self-proclaimed "proud mama" myself, I know she was just loosing it in the stands!

The kids at IGC are going to be buzzing about the Super Bowl next week, with one enthusiastic, rightfully biased, principle swaying her students to Seattle's side. 

I was born in Denver, and have always been a Broncos fan, but I think I might have to root for the Seahawks for the ring this year for Mrs. Bailey, and her amazing son, our local Oklahoma rookie, Alvin Bailey!

We had tons of great football food for the game Sunday, which included these incredible Blonde Brownies.  The best thing is, I was able to whip them to up quickly after church because of the ease in prep.

Already planning my Super Bowl snacks---Go Seahawks!!!

My Blonde Brownies--the light brown sugar batter compliments the decadent chocolate chips hiding inside. 

These are the easiest bars to whip together for game days when you have to ready to hit the couch and  root for your team.  

Hope you get a chance to try this recipe.

Blonde Brownies--

1 1/4 cups brown sugar
1 cup Bisquick (I love this stuff! It has all the baking soda etc. built right in!)
2 eggs well beaten
1cup mini chocolate chip morsels---or 1/2 cup morsels and 1/2 cup chopped pecans.

Mix ingredients.  Grease and flour (or spray with Pam) an 8x8 pan.
Pour batter in pan and bake for 25-30 minutes at 325 degrees.  Don't over bake.  You want them to be a bit gooey inside.

I double the recipe and bake it in a 13x9 pan.  I had three French boys here for the ballgame, so all recipes were doubled, consumed and appreciated!

Enjoy the games all!

Ree're killin' me!

I'm going in for some routine blood work this afternoon at 3:00.  I was instructed to fast for 12 hours, so I haven't eaten since 7:00 p.m. yesterday evening.

Today is my day off, so I just flipped on my favorite Food Network personality, fellow Oklahoman, Ree Drummond's show, The Pioneer Woman.

I'm dying here.  Today, she's making spicy chicken drum sticks, cowboy bacon beans, and BIG, mega, mocha frosted chocolate brownies!  My stomach is growling, but I just can't look away.

I just put on a crock pot of pulled, BBQ chicken for dinner, (which will be as soon as I sprint out of the Dr.'s office today) and I'm making chocolate brownies for dessert.

Cannot wait to stuff my face.


I went to see "Lone Survivor" with Monty and Forrest last night, (I love our "guy" dates.) I'm still emotionally exhausted! Man, what a powerful movie!

If you're a veteran, and you're reading this...consider yourself hugged!

And go see the movie people!


I'm so glad I saved my hibiscus plants from the cold temperatures by bringing them in the house this winter.  I get two to three new blooms each morning that the east sun shines through the window to alert them.

I put snipped this one, and put it in a jar in my kitchen window sill today---a little summer time in the middle of winter.  I think I'll put my flip-flops on and do the dishes~

Aloha from sunny Coweta, Oklahoma!


I always love sharing my back porch, sun set snap shots.  It was gorgeous last night!

The roads are clear here in Coweta, Oklahoma, and it's finally warming up.  Hope everyone has a great Tuesday!


I was so very excited to accompany my precious 4 year old grand son Landon to his first day of preschool today where I used to teach when my kiddos were young.  Oh, how time flies!

They had dinosaurs and pretty girls---he had no problem staying!

On a funny note, I usually consider myself a pretty tough lady, (had all three of my babies with zero anesthesia or drugs) but I've had a headache for several days now due to a literal pain in my neck---I almost left the house with two different boots on this afternoon!  I'm ready for springtime and lots of walking.  It always helps keep me stretched out. 

Here's to warmer temperatures and matching shoes...or better yet, summertime and NO shoes! 

Landon being shy about taking the first step into Mrs Stephanie's room.---melted my heart~

I've been a big old bawl bag today!  I could hardly edit these pics because I kept tearing up. 

My daughter Jessica letting go of Landon's tiny hand to let him cross the thresh hold <

Ga-Ga was thinking I just might have to stay with him for the afternoon!

They had dinosaurs (the first thing he grabbed to play with) and pretty girls!  He decided to stay!  Whew~~


Two of my sweets and I made Glitter Playdough today---cherry scented.  The recipe was probably my favorite yet, velvety soft, and pliable.  Playdough means a lot to me, so this is pretty important information.  The kids loved it, and my fingers are still covered with blue and red food coloring after 7 hours.  It'll wear off eventually---totally worth it!

2 cups flour
1 cup salt
1 cup water--cool need to boil
4 tsp. cream of tartar
4tblsp. olive oil
food coloring
Almond extract---several drops

Mix all ingredients together and add desired amounts of food coloring.  Sprinkle in favorite glitter and knead until soft.  Break out the rolling pin and cookie cutters...let's make some sparkly cookies!

Miss Clara Jane making glitter playdough cookies---Her hair is extra cute, (has a touch of oatmeal from breakfast in it!) The more fun we have, the messier they are when mama comes to pick them up.No one said I run a squeaky clean ship

I should not be trusted to work with food coloring---I get way too excited and throw caution to the wind. Did I mention Ga-Ga doesn't run a squeaky clean ship?  This week's and purple.


Little Landon's been having a terrible time not wanting to wear his patch over his right lens. The Dr. said he needs to wear it to strengthen his left eye---his mama Jessica had to do the same thing when she was his age, but he can hardly stand it.

I was very proud of him today. He asked to put one on his Furby and then patched his own lens and wore it for over an hour! (He also wanted me to call him "Sid The Science Kid" because he knew that it would make his eye better, and it was science )

Great job Landon the Science Kid!!

That's also his mama's Furby from when she was a kid, and her little glasses that I kept.  He sure reminds me of my sweet daughter!



I hope everyone had a most wonderful New Year's Eve, and wishing you all God's many blessings in the coming year.  May you have a productive, exciting, wonderful 2014!!

Ready to ring in the new year with my sweet family--two years ago my sister Shannon and I counted down the new year together with a tearful hug as we anticipated her surgery as a result of breast cancer.  Last night we celebrated with nothing but happy smiles.  So thankful that my sis is 100% cancer free today! 

My sister Faith wishing peace to all in the coming year!

My hard working son and husband were way too motivated today. They raked all the leaves in our yard and chain sawed and burned all the limbs that fell because of the ice storm.  Zeus and I were less motivated, and thankful for the cozy fire to sit by. 

Good bye 2013, and all the brown leaves and fallen limbs  in my yard!  Thankful for my hard working boys!
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