22q 11.2 Deletion syndrome "Jases Story"
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01/10/2019
01/10/2019
11.5 hours of bi-pap last night!!!!! Woo whoooo
Jase update!!
We've had the bi-pap machine for almost 2 weeks now. He's been pretty resistant and hasnt left it on for more than a couple hours at a time. BUT last night he wore it for 7.5 hours, no leaks, no discomfort!!!! He woke up so happy, in such a great mood. And he had a GREAT DAY at school. He came home excited to show us his drawings and tell us all about his town hall meeting lol. These kids make me SO happy and very proud. I am reminded every time I see their smiling faces, just how truly blessed I am.
Jase Update: We had an OSA appointment today. Jase is officially on the cpap team :/ He seems to be ok with the mask and is surprisingly looking forward to getting his machine. Hopefully this excitement will last and he'll actually sleep with it on and get some much needed rest.
09/05/2016
Student with Chromosomal Disorder Proudly Releases Own Version of Taylor Swift’s “22” as “22q” At first glance, Amy Maiorano is a typical twenty-one-year-old college student. She attends classes at The College of Saint Rose in Albany, NY, lives in an off-campus apartment with fellow students…
30/04/2016
Celebrating all the progress that Jases has made this past year. ♡
I heard back from Cardiology today!! Jases heart is -A-OK!!! We couldn't be more relieved. Thank you for your prayers.
Jase Update: Asking for good thoughts and prayers for tomorrow. Jase has an Echo and EKG scheduled. I'm praying that his heart looks healthy and strong.
29/02/2016
Mommy and Daddy!!!
29/02/2016
Stiven S.
29/02/2016
Ginn Farley! Jase's Gran♡
29/02/2016
TODAY IS RARE DISEASE AWARENESS DAY!!! Help Jase spread awareness by posting your 22q hand pictures! ! Simply write 22q on the inside of your hand and snap a shot ;0) Thank you in advance!
29/02/2016
26/02/2016
Jase: Mommy I use kind words.
Mommy: Very good J.
Jase: Open my zebra cake right now! That's not kind words mommy. I say please open my zebra cake for me please mommy.
Mommy: That's right Jase, very good job.
Jase: You proud of me mom?
Mommy: Yes I am very proud of you sweet boy.
Jase: Yeah cuz I'm a nice boy.
Lol I love this kid!!!!!
08/02/2016
05/09/2015
I think it's safe to say he had fun at field day today! Luv him so much.
Tomorrow is Jase's 1st day of 1st grade! Omg where has my Lil boy gone? Trinity's going into the 4th grade and goodness she's almost as tall as I am.
PLEASE LIKE AND SHARE!!
24/06/2015
Today marks 1 year post op for Jase! He has made leaps and bounds since his flap surgery. He can talk so much better and his confidence has skyrocketed. It warms my heart to see him overcome these obstacles.
I truly have been blessed with 2 amazing kids! ♡ ♡
Griff Watkins
23/06/2015
Received this picture in the mail today! So cute!
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