Location: Arizona, USA
Form of EB: Recessive Dystrophic-Hallopeau Siemens
Birthdate: November 25, 1996
Mommy was left to take care of Nicky all by herself with no help by no one. Daddy worked and could not stomach to see his child in pain, and the insurance would not help cover a nurse or anything else, not even gauze. With no family nearby, when things started looking like they were going to get real rough, mommy took Nicky to Italy with her to spend 8 months with her family. Nicky thrived and remained an extremely happy child... (not to mention bilingual!) and developed a very special relationship and bond with his grandparents and aunts.
In his short life, Nicky has had countless episodes of throwing up blood, a hand surgery with another one coming soon, and the countless open sore areas that cover 20-50% of his body at any given time. His ankles and elbows are his worse spots and blister at the slightest provocation. If these areas get hurt it takes several weeks if not months to heal. Thanks to Sheri's wrapping techniques he's actually improved quite a bit and he can go weeks without having a "new" badly blistered area. Sheri's hand wrapping techniques have improved the look and feel of his hands *dramatically* and it is thanks to her that Nicky will have to undergo very few hand surgeries in his lifetime.
His teeth have come in good so far, and it's been a challenge to keeping them clean. As with any RDEB child, his nutrition has been a major concern. At this moment he's only on liquid/mushy foods, as he will choke on anything else. He might be able to eat cookies for a week in a row, then one day he will choke on them, then he can eat them again. It is a very strong possibility that he will need a throat dilatation to enlarge his esophagus sometime soon, but mommy wants to wait until it's absolutely necessary.
Nicky still has his happy disposition, but, as any 2.5 year old, he wants to have his way no matter what and has no patience whatsoever, so he will have his little tantrums or cries. He is however, an extremely bright child. As of his 2 yr. 9 months anniversary he has mastered 4 computer programs, can recognize at least half of the alphabet, and can count to ten. He has mastered some fine motor skills that we thought he'd never be able to do with the condition of his hands, and loves his routines. He also loves Barney, Teletubbies and Elmo.
Nicky is a joy to be around, and his baby-sitter loves him to pieces. He has adapted with mommy being at work and gone for 9 hours a day quite well... she is sooooo proud of him! He is a cuddler and loves to give out kisses. He truly is a happy and well adjusted child, even if in his short life had to endure quite a lot, not only physical pain, but changes in his surrounding and the people he's around. One thing remaining constant, however, is mommy's presence and devotion...
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You've got a friend in me from Toy Story