Devon Stewart Victor

  

Devon Stewart Victor ~ Full T-13, BALANCED translocation 5 and 13~Born: June 15, 1995 

Hi All :o)

I’ve been remiss on updating Devon’s page. He’s now 17 yrs old and a senior in high school!!! He’s now about 5’2” and 112 lbs…thank heavens he can walk!!!

He eats like a horse (orally), never sits down, very determined, extremely opinionated and no sense of

personal safety. He communicates with his Tech Talk (PECS & Real Voice recordings (my voice) and believe me when I tell you he can NAG with it! He uses some sign and ultimately will just drag our sorry butts to what he wants if we’re not getting’ it :o)Aside from terrible acne…not fair…he doesn’t eat hardly any junk food and no soda…his biggest problem is his eye. The silicone oil bubble reached it’s shelf life about 1 ½ -2 yrs ago. The inflammation is making his cornea milky blue-ish and Dr. Mav is concerned that the inflammation is weakening his optic nerve. Good news is his Retina is still stable/attached. We see his retina specialist every 1-2 months. Last month (8/2012) his pressure was up and another drop was added for a total of 2 different drops for pressure and 1 for inflammation. Problem is the one for inflammation makes the pressure go up…catch 22 :o( We go back tomorrow and if his pressure is still up, we’ll plan surgery to remove the silicone oil bubble and to scrape the film off his cornea (not lasered) . It’ll take some choreography…there will be both his Retina specialist and his Cornea specialist there. It’ll be a day surgery and a week home from school. He’ll be wearing a clear/air-e-ated eye patch and women’s bag gloves to keep him from rubbing his eye or isolating a finger to poke it. Unfortunately his eye will look like hamburger…we know this from previous surgery…really nasty looking :o( I guess that’s about it for now…always happy to answer any questions :o)

TO learn more about Devon please visit his  ARCHIVE ALBUM
  
We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~  Vanessa
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