Victor's Journey: Little Victor has a cast

Tuesday, September 23, 2008

Little Victor has a cast

Over the weekend Victor was playing on the side of the stairs, and managed to break his foot! He's been wanting to imitate his sisters, who climb up the side of the steps to go around the gate at the bottom of the steps. He can put a foot up on the bottom step and pull up, but this time his shoe (and brace) got caught in the rail, and twisted his foot inside of his orthodic, leading to a small metatarsal fracture in his left foot.

As a result, Victor has now a cast from his toes to under his knee, but fortunately for just 2 1/2 weeks. He is crawling around with it, and can pull up to stand, but hasn't been able to walk with it yet as he is still feeling some pain. Poor little guy, he has a fresh set of challenges to face for the next few weeks (can't chase after the kids in the neighborhood anymore, one of his favorite activities while he is outside). And no baths for Victor--and he loves them so much. But we are trying to make the best of it. The cast is bright orange, and his sisters are planning a "cast-signing" party for him. We will be working more on his communication skills during this "still" time :-)

Our Vision

We wish to develop a large community of friends around Victor who:

Allow themselves to be filled with the joy that Victor stirs within people who get to know him for whom he really is: a happy child rejoicing in the smallest things of life, reminding everyone to live for the moment,
Accept the differences brought by people and children with special needs as an integral part of society,
Understand the challenges people and children like Victor face and are willing to be advocates for their needs, and
Want to help make a difference in other people's lives by sponsoring research into rare diseases like Pitt Hopkins syndrome.

Victor's Story

This is Victor, our precious son. Our names are Theresa and Paul. Victor was born in August of 2005. He has a deletion of Chromosome 18q 21.2 – 21.32 / Pitt-Hopkins Syndrome. We also have two wonderful older girls who are typically developing. Our family lives in North Carolina, USA.

Victor is a very happy child, who loves to meet and interact with everyone–a true extrovert. He has dysphagia, which is a swallowing disorder, and has to have his liquids thickened to a honey consistency. Victor has asthma and has been hospitalized many times due to viral respiratory infections. He also has severe food allergies to nuts, dairy, eggs, and kiwi. Victor sometimes holds his breath for a few seconds when he doesn’t seem to be feeling well or is very tired. Victor has developmental disabilities. He rolled over at 9-10 months, sat at 11 months, crawled/bunny hopped at 14 months, stood alone at almost 2 years old, took his first steps at 2, and began walking independently at about 2 1/2 years old. He wears custom orthotic inserts in his shoes to provide proper alignment and added support when walking. He has a little bit of an ataxic gait pattern, and needs help with curbs and stairs.

Victor is very curious, and investigates all things in his environment. His receptive language is much more advanced than his expressive language —he can understand much of what you say to him, but currently is not speaking yet. Pointing has helped Victor tremendously to let us know what he wants and to make choices, and he is beginning to use some signs, putting 2-3 signs together at a time. He also uses a communication app developed by his Daddy for the iPhone/iPad, called Verbal Victor, with much success! We help him learn new things through prompting, repetition, and redirection. Victor loves listening to music, looking at books, playing with tops, watching favorite videos, using the iPad, playing outside, swinging, kicking a soccer ball, going down a slide, pedaling his tricycle and many other things–he enjoys everything that life has to offer! He is a joy and an inspiration to us all!