Busi-ness

Boy--it's sure been busy around here. My big brother Reece started school. I'm so proud of him. He's in first grade and real smart. I hope I'm just like him someday. He lost 2 teeth and is now rich 'cause the tooth fairy gave him some dough. (Don't tell anyone, but he has two holes in his mouth and it sort of looks funny. I wonder what he's gonna look like when he looses more teeth.)
My dad's been real busy too workin' alot. He's a pilot ya know. I'm proud of him too. He just started fly big planes. One day, he'll even fly bigger planes but he still had many miles to go. (Not sure what all that means.)
And my mom, she start school again, which is sort of strange to me 'cause I thought she was too old to be in school still. She's a little stress these days. I know this 'cause she eat p'zone's like crazy.
Anyway, only a week and a half until the big bowl a thon. I heard all the lanes are sold. I cannot wait to go bowling. I heard I might have a special bowling shirt on just for the ladies. I'll have to get my hair styled a special way. ( I have my own person hairstylist on hand.)

Popular...I'm Gonna be POP-u-LAR....

OK--So the soundtrack Wicked is all I heard when my mom was carrying me around. Anyway, I can't believe all these businesses and people care so much about me. Look at some of the things for the silent auction:

2008 FC DALLAS SOCCER BALL SIGNED BY TEAM
ADVOCARE LOGO JACKET FROM TRIMOUNTAIN
BARRY ALVAREZ UNIV OF WI, SIGNED FOOTBALL
BEAN BAG GAME
BEAN BAG GAME
BEEFEATER GIN GIFT BOXES (2)
BOTTLE OF WINE GIFT BAG
BOWLER JOURNAL SUBSCRIPTION
BOWLING BALLS (4)
BOWLING LESSONS W/ DIANDRA
BOWLING SHOE GC
BOWLING SHOE GC
BRUNSWICK SHIRTS (6)
BULLS BASKET BALL SIGNED
CLOCK FROM MYLASIA
COFFEE GIFT BASKET
COFFEE LIQUOR BASKET
CUBS TICKETS
DINNERS (3)
DREW BRESS SIGNED FOOTBALL
FIREMAN BASKET (KID)
GATORS GC ($100)
GOOD TIME ENTERTAINMENT -4 HOURS
GREEN BAY PACKERS SHOE RYAN LONGWELL
HAIR BASKET
HAIR CUTS (3)
HOBBY TOWN ITEMS
HOME INTERIORS BASKET
HOME PARTY BASKET
HORNET/BULLS TICKETS W/ VIP PASS
INSTRUCTIONAL BOOKS OF BOWLING (2)
IPOD
LA QUESADILLA GC
LIVIO'S GC
MIKE DITKA POSTER SIGNED
MONARCH JEWELRY
MUGS
NORTHWOODS GC (4)
RAILCATS SUITE PACKAGE FOR 20
SHED AQUARIUM TICKETS
SIGNED MAGAZINE HORNETS LEBRON JAMES
SIGNED PICTURE OF BOWLERS
SIGNED PIN/TSHIRT BY NORM DUKE, BRIAN VOSS, BOB LEARD JR.
STRACK AND VANTIL GC
TEAM USA VEST AND JERSEY
THOME JERSEY SIGNED
TURBO 2 IN 1 BAG
TURBO TWO BALL BAG
WEBKINZ BASKET
WHITE SOX BOX SEATS (4)
WHITE SOX OZZIE SIGNED BALL
WII
WINE GIFT BASKET

OH, What a Night...

No, I'm not singing the song that we are familiar with. Boy, it was a rough night. I didn't do so well with the bottle. I gave my mom a scare and started choking. Yep, went down the wrong hatch. Because of my high palate, I have a hard time sucking. (Hence the reason for the feeding tube in my tummy.) Sometimes, us CDLS kids don't get to drink from a bottle but I'm really trying hard to. In addition to my high palate, I have reflux which I take medicine for a couple times a day.
85% of my CDLS friends have reflux prolems. Most times, we can grow out of it. Talk about putting a damper on a good cuddling session. It comes out my nose and mouth. GROSS. Then it clogs up my oxygen thingie and PLEAZZZE -- lets not even mention the blue sucker monster that goes up my nose and in my mouth to get any extra stuff out. UNCOMFORTABLE. It burns and sometimes my nose gets red and I get a bit of a bloody nose at times.
I don't want to gross you out too much so I'm gonna take a nap and talk to you later.

Practicing????

Have you been practicing for the Bowl A Thon??? I have. I fully plan on getting a six pack. NO SILLY-Not a six pack of beer. A six pack in bowling terms is six strikes in a role. I've also been working pretty aggressively on my split. The gutter balls are becoming fewer and far between. Practice make perfect.

All kidding aside, I'm so lucky that one day, I will be able to actually be able to hold a bowling ball. Many children w/ CDLS are born with problems with their hands. Some have small hands, like me. Others may have webbed fingers and bone abnormalities. I've had many x-rays of my hands and arms to see if my bones were normal in my hand and thank God they are.

Yep, my hands and fingers are smaller than other babies my age but I don't mind. I plan on using them the same way. And let me tell ya... I cannot WAIT until I can suck my thumb---it runs in the family, right mom?

Do You Believe in Miracles?

I surely do! I believe God has a plan for me. When I was born, even before I was born, God mapped out what my life was going to be like. Right now, I have it good. I mean really good. I eat every 3 hours on the dot! I get my diaper changed when I make a fuss and I get lots of snuggles. However, there were some trying times for a while.

When I was first born, my family was told I was going to be deaf. (My auntie Michelle is so very smart. She KNEW I could hear. She just had a feeling.) I could tell my mom and dad were a little upset but I knew they would eventually find out the real truth. It was so strange. I felt so many people praying for me and wishing me well. So may children with Delange Syndrome are hearing impaired or deaf.

Once I was transferred to Rileys in Indianapolis about 3 weeks are so after I was born, the truth came out. An extensive hearing test was done and it was discovered that I COULD hear. Everyone was so happy and praised God for listening to their prayers. I believe it is a Miracle and God performed it!

Humid

Wow! This humidity just kills the do. My hair looks so good until it hits the humid air. Just scrunches up. Did you know that having this curly hair is part of the syndrome? Yep, these beautiful locks are a trait of De Lange Syndrome. It also includes prominent eye brows---ok ok-- also known as a uni-brow. Don't worry though, it doesn't bother me any. It just accents my beautiful blue eyes.
Sometimes it's hard to see my eyes because my eyelids tend to droop a little. That, also, it a sign of my disorder. I overheard my mom, (yep, I'm nosey too) and she said that eventually the doctors can fix that with surgery before I start sitting up. Because I tend to lean my head back to see people, sitting will be sort of tricky without the surgery. You guessed it....plop...I will fall backwards. I know my big brother Reece will be there to pick me back up but it really will be fun to do it on my own.
Because us Delange babies grow slow (we are cool dudes and like to take our time and chill out and listen to a little Buffet) I might not sit up until I am 2 years old. We are so special, we have our own growth charts. Are you interested in looking at them? Just go here.
Have you signed up yet for the Bowl a Thon? My aunt Leenie says that we only have 30 lanes and already 8 have been filled. If you don't have a team of 5, we could hook ya up. Just email me at bowlformason@hotmail.com. Thanks guys.

HOT!

What do you think? OK, so the bowling ball brings out the highlights in my hair and blue is my best color.

I just found out that there is going to be a raffle. Get this....the prizes are awesome....

1st prize... 32" LCD TV
2nd prize..Railcats Suite for 20 people
3rd prize..$250 Gift Certificate to Alberts Jewelry.

Contact me at bowlformason@hotmail.com to see where you can pick your tickets up at. Gotta go, I'm still tired and need my tummy filled.

HI!

Hi! As you have read from above, I have CDLS. If you would like to learn more about CDLS, you can go here. So far in my 2 1/2 months here, I have been in 2 hospitals, have had 2 surgeries, lots of doctors appointments and therapy all the time. I have to use oxygen to help me breath and have a feeding tube. Although, lately, my mom and dad have let me use a bottle a couple times a day and I'm really digging it. I hope I increase the amounts each time so that I can use a bottle all the time. This tube in my tummy really is bothersome and I'm not all that crazy about it. I also try to take the oxygen out of my nose when my mom is not looking. SHHH....don't tell her. My brother Reece is awesome and doesn't tell on me when I do bad things like that. He also is a pretty hard sleeper 'cause when I scream and cry all night because of my reflux, he doesn't even wake up. Let me tell you, I try, I try. He's very entertaining and at that time of night, I could use the company.

No one knows for sure right now, but I could have developmental problems in the future and growth problems. I have many appointments coming up at Riley's Children Hospital in Indianapolis. Boy, I dread that ride. How boring and the scenery makes me yawn. So usually, to stir things up, I try to cry alot and sleep.Anyway, the costs of travel and the visits might become overwhelming so my good family and friends are throwing a Bowl a Thon for me on September 6, 2008.

CAN YOU BELIEVE THE GREAT PRO BOWLER DIANDRA ASBATY IS ONE OF MY MOM'S GREAT FRIENDS? She is the brains behind this. We are so lucky to know her. You really should read about her here. She has been all over the world and is super good. (Not to mention, she is a hottie, I think she has a thing for me.) I haven't seen them yet, but I bet she has a bunch of trophies and medals, not to mention a gazzilion bowling balls in her trunk.

My aunties are helping out too. I would say that Leenie is my favorite but I really kind of like them all. They spoil me rotten and hold me all the time. They call me "Sunny". Let me tell ya, it's a little embarressing and the minute I can muster up a few words, I'm gonna tell them so.
I am really looking forward to this Bowl a Thon. Can you believe, the Chicago White Sox, donated a bunch of stuff including a ball signed by Ozzie, a jersey signed by Thome and 4 box tickets. My mom LOVES the White Sox. She is so excited that they did this just for us. There is going to be a raffle and bunch of other things in the silent auction including private lessons from Diandra, bowling balls, bowling shoes, baskets of all sorts. I'll have the ladies post a list later this week.

Why don't you come and join us? It's only $50/person or $200/team (5 people). It will be great fun and I'll be sporting a new bowling shirt you have got to see. Just email me at bowlingformason@hotmail.com for more information. I'm sort of tired so I'm gonna go.