In 2007 our third son was born, we were expecting a healthy, normal birth, he immediately went into respiratory distress, and was flown to a NICU in St.Louis, Mo for possible heart lung bypass(ECMO). While in the NICU he was diagnosed with a very rare syndrome (Rubinstein Taybi Syndrome), this is the story of our journey, our new kind of normal.
I can never get this child to put food in his mouth himself, he throws it as hard and as far as he can when I put food on his tray, but put it on the floor.........
OH! Seriously. Many times we've considered serving Addie's chow on the carpet instead of a plate. I can so relate to having a little hunter in the house.
Alex was born with Rubinstein Taybi Syndrome. Pulmonary hypertension at birth. Malrotation of the intestines. Uracheal cyst Phase 2 kidney reflux (right side) Angulated thumbs mild near sighted in right eye dysphagia PDA
HOSPITALIZATIONS: Was in NICU for 6 weeks on oscillator for 5 days, and ventilator for 3 weeks. hospitalized at 2 months with aspiration pneumonia g-tube placed at 4 months SURGERIES: Malrotation corrected Uracheal cyst removed at 3 weeks old
Please contact me!!!!!
If you just got the news that your little one has Rubinstein- Taybi Syndrome, please feel free to contact me. There is no greater support than from someone that is traveling the same path. I would love to talk with you. japruitt99@msn.com
Please ask me about my child, the one that has been through so much. He has special needs, and life right now is rough. I wont be offended with the questions that you have, it hurts more when you keep silent, and pretend he doesnt exist. I need to talk about him, and know that we have been missed. -Jessica Pruitt
(Inspired from the writings of Emily Dent)
Getting ready to fly
Springfield Il, to St.Louis, Mo
Transport team
Alex's angels breathed for him for the 45 minute flight
Alex"s helicopter
Flown to St.Louis at 1 day old
very sick
ear muffs to keep it quiet
Room #1849 (green hall)
Alex on vent
5 days old
Mommy finally gets to hold you
2 weeks later!
H. Farouk Sadiq, MD
Dr. Sadiq.......Alex's faithful visitor in the NICU
Dr. Sadiq and Alex
Leaving a footprint
last day at NICU October 20, 2007
Thank you CGCH
We love you Dr. Walentik, Dr. Sadiq, Dr. Darling,Katie,Jen,Lisa, Pat, Debby, Kathy, Jessica, Jennifer, and every last one of you respiratory therapists!!!
"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."
About Me
Jessica mommy to Alex/ RTS
Illinois, United States
I am the wife to Adam, and the mother of four wonderful boys Noah 6, Joel 3 Alexander 2,and Max 0. Alex was born September 7, 2007 with RTS, a very rare syndrome that I am learning not many people or doctors know much about. I hope to educate others about life with RTS, and how sweet and perfect RTS children are, I have begun a new journey, and a new kind of normal, and I want to share it with you.
8 comments:
What a little stinker!
Those pics of Max below are ADORABLE! What a handsome little man!
He just loves that kitchen floor!
Kelly
OH! Seriously. Many times we've considered serving Addie's chow on the carpet instead of a plate. I can so relate to having a little hunter in the house.
OOOOOOhhh Maybe that's what I should try.....
Hehe, what a cheeky monkey!
What ever works! Sooo clever. Love him!
Whatever works!! He just can't get enough of that floor!!
Kooky kiddo having a love affair with that floor. Too funny!
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