Happy Birthday, Daddy (Patrick Blair). I love you so much. You are so silly. We are going to have so much fun. Can I stay up late and play on your birthday? You are the funniest, best and strongest daddy. Prayers with Daddy are the best.
Sweet Maggi Blair, our big girl still wants to be held by daddy, Patrick Blair. Maggi Blair is BLESSED☆♡
Today is Trisomy 9 Awareness Day!
This is Maggi Blair and she has Trisomy 9 Mosaic which means that she has a third copy of the 9th chromosome in some of her cells but not all.
Trisomy 9 Mosaic is so rare, right now we know of less than 200 people worldwide living with the condition!
Please wear a purple shirt today to show support for Maggi and her other T9M brothers and sisters. Post a picture of yourself in purple and fill up my feed with Love for Maggi!!
Please share th...is with your friends!!
I look forward to seeing all of your pictures. Let's see how many people we can educate about this condition. If you would like more information on this condition or Trisomy in general, please visit rarediseases.org.
#WT9D #Trisomy9 #Trisomy9Mosaic #T9M #MaggiBlair
Stay updated on Maggi. Our girl has been doing well. Recently her website had hackers. So, visit her FB page to see what the cutie is up to. Love to all! Trisomy children are strong, beautiful and need support.
Due to some recent hacker attacks injecting viruses and malware into Maggi's website, we're temporarily shutting it down and letting this Facebook page be her "website". We'll try to do some weekly updates and get back into the swing of keeping y'all informed on how the little princess is doing!
Love to all!!
We visited Maggi's orthopaedic surgeon (Dr. Devito at Children's Orthopaedics of Atlanta) on Tuesday. They did the routine x-rays, and found that the curvature of her spine hasn't increased much (maybe a couple of degrees, if anything).
He talked about how we felt that she should probably have two rods in her back at the next surgery - one to correct the scoliosis, and the other to counteract the rotation of her ribs as a result of the first rod. He said they ...would be magnetic rods, and it would be as invasive a surgery as when he put the rod in to begin with... which would require a few days of hospitalization.
HOWEVER... he also said that since her curvature isn't progressing too rapidly, and her chest/torso growth hasn't progressed right now, she likely hasn't hit that next growth spurt... and until she does, he doesn't think surgery would be beneficial.
SO... we get to wait until August to go see him again for another set of x-rays, and to see if he thinks she's ready for surgery yet.
That's a good thing! Maggi hasn't had a surgery since October 2014!! Praise God from whom all blessings flow! He deserves all the praise for Maggi's incredible health right now!
It's my birthday!! Help me celebrate by leaving me a comment!! Love you all!!
Eleven years!! Can you even believe it?
She's been alive longer than any doctor thought she would be...
She's had more surgeries than the number of years she's... been alive...
She's done more (and continues to do more) than a lot of people ever thought she would...
She's God's perfect child, and I'm so happy Donna and I were hand picked by Him to watch over this little girl. She has taught us more than anybody ever has!
God bless you, Maggi Blair!! Happy ELEVENTH Birthday!!
More information bits about Trisomy 9. Did you know T9 is the 4th most common form of Trisomy?
(Trisomy 21 (Down Syndrome), T13, and T18 being more common)