Maggi Blair - News & Updates

Hi! My name is Maggi Blair. I was born with CRANIOSYNOSTOSIS and was diagnosed at 14 months old with TRISOMY 9 MOISAIC SYNDROME. Today I am saying "mama" and have 7 teeth, with the 8th one coming in. I weigh almost 18lbs and am 28" long! Wow!

Friday, December 30, 2005

A Wonderful Turnout for the Benefit!

Daddy was able to go to the Benefit on Tuesday night, mommy and I were sick with bad colds. It is moments like this that we realize how loved we are and how lucky we are, too!

The Benefit was held at Manuel's Tavern, with the organizing of Robert Drake and Tommy Futch with Laughing Matters. There were some really neat gifts donated for auction, too. In total, over $1100 was raised, about 49 people showed up! Daddy said that everyone laughed and had a great time. It is nice to know that everyone came out to have fun, to help me, and honored me in such a positive way.

Mommy and Daddy have the best friends in the world. Anytime they need something for me or my brothers and they can't provide it, their friends are always there. Funny friends, too! Mom was laughing when daddy told her some of the funny things they said on stage and mommy would laugh so hard she would start coughing again! I didn't understand most of what daddy was talking about, but I know it made my mommy smile.

Daddy is going to put up a list of all of the artists and people that donated items to the benefit. If you want to know more about the artists, you can find out that, too!

This is a big Thank You from me and mommy to all of you that participated and came to the event. We can't tell you enough how much it means to us and know that there are brighter days ahead. Just look at how much better I am getting and how happy all of you are making my parents!

Tommy, when can I start taking improv classes?
Maggi

My Visit to Scottish Rite


Yesterday was the big day for my parents to meet with the orthopedic staff and for my helmet to be fitted.

First, the really good news!
Dr. Devito, Orthopedic Specialist, talked with my mom and dad about the scoliosis. He feels that the scoliosis is what they call, "infantile", which is different than congenital. It is also, less serious! How happy we were to hear that news from him. He said he didn't feel that the curve would need to be corrected with surgery, but with a night time back brace. They did another x-ray on my spine and it showed that the curve had increased since my last visit on 12/12/05. This did concern Dr. Devito, therefore, he wants Dr. Stevenson to move forward with surgery for the Tethering of My Spinal Cord. This will relieve the pressure that the spine is receiving and usually helps the curve to stay the same and often times, decrease!

We should have our appointment scheduled with the nuerosurgeon, Dr. Stevenson, by Monday. I imagine we will be looking at surgery to be really soon, like in January...simply because my spine continues to curve more with each visit.

Best News of All! Dr. Devito said he did not see any reason why I should have any problems with walking! That was the best news for my parents yet...I think they can handle my upcoming surgery better than the idea of me not being able to walk. Besides, I have two bigger brothers to keep up with that are anxious to have me play in their room...and mom keeps saying something to me about First Position, Second Position, Passe....

My Helmet
Mom and Dad pick up my helmet in two weeks. I will have to wear it for 23 hours a day for three months. They put me on this really neat machine that scanned my head with a laser light, to get the curves of my head. There were all sorts of designs to choose from, but mom and dad got solid white so that we can have a helmet decorating party! I think it will be nice to have my name put on my helmet. We did see other babies with helmets and they looked so cute. It is hard on the outside, but softer on the inside. I will have to go back to Scottish Rite at Fayette Hospital every two weeks to be checked and for any adjustments to be made to the helmet.

One Big Question for us!
What happens to me wearing the helmet when I am going to have surgery on my spinal cord? We will find that out when we talk to Dr. Stevenson. Not too sure if both can be done at the same time. We will have to keep you posted on my new attire as we go along!

Thank you for your Prayers!
Even though surgery is not the greatest option and we aren't looking forward to it, we did get better news than we thought we'd get. So, we stay positive and my mommy and daddy are hugging me, encouraging me, and praying with me everyday. See how much all of your prayers are helping? Your prayers help give my parents strength and help me get better.

We love all of you so much!

Maggi

Thursday, December 22, 2005

Comedy Benefit for Maggi!!

There will be a Comedy Benefit for me to help cover
the cost of my (possible) upcoming surgery.
Maggi Blair Comedy Benefit
Tuesday, December 27, 2005 / 8:00pm
Manuel's Tavern
602 N Highland Ave NE
Atlanta, GA 30307
404-525-3447
$15 cover charge
Laughing Matters (an Atlanta based improv comedy troupe)
will perform with special guest
Gary Anthony Williams
(Blue Collar TV, Malcolm in the Middle, Soul Plane, Jimminy Glick in La La Wood,
Harold and Kumar Go To White Castle, Undercover Brother, and more)
There will also be an auction between acts.
PLEASE tell all your friends and family!
There is only seating for 90 people, so hurry and reserve your
tickets with Laughing Matters (www.laughingmatters.com)!!
All proceeds go to help pay for Maggi's surgeries and medical costs.
For further details, please email
(More information to come!)

Wednesday, December 07, 2005

Prayer Request


Please remember these special people in your prayers:

Kathy Kinsey, recently lost her husband, Rueben
Harry Chaney, came home from NICU before Thanksgiving, pray that he continues to gain weight and stays healthy
Anthony, had cranio surgery early November, pray that he continues to improve in development and for his health

Thank you!
Maggi and Family

December 6, 2005


My Family at church!

7 Months Old


Can you believe I am already 7 months old? I can't! I have discovered my tongue can be used to make a gobble sound like a turkey! It is making my mom and dad laugh so hard! My brothers make me laugh out loud and are spoiling me rotten with all of their kisses. There are some cute pictures of us in the photo album. I love it when Michael and Zack are here on the weekends, they are such great brothers.

This past Sunday our church had the Christmas Concert, "Love's Pure Light". Daddy played trombone and the choir sounded so beautiful. I was very quiet during the whole performance, except for once...I coo'ed during a prayer and mommy put my pacifier in my mouth! I fell asleep after that. It was wonderful to see our church family. I saw Rachel, one of the babies in my class and she was sitting up straight, holding her head up...so, I tried to do the same as her! Mommy was so proud of me! Soon I will be able to hold my head up all of the time!

Oh, yeah! I am cutting my 2nd tooth!

I love all of you and can't wait to get more hugs and kisses from my family and everyone at church!

Maggi