Victor's Journey: Last day at the hospital

Tuesday, December 23, 2008

Last day at the hospital

Yesterday was Victor, Theresa, and Paul's last day at the hospital. Victor was discharged around 6pm and we were too emotionally and physically tired to make a post before going to bed. The great news is that Victor has been continually improving and as you can see from the pictures he was very ready to leave the hospital! He was actually supposed to be taking a nap, we laid him down in the crib but he got up immediately and tried to break free :)

The not so good news is that his modified barium swallow study (MBSS) showed that he was silently aspirating on liquids of nectar and lesser consistency. This is a step backwards for him since it was shown in a previous MBSS that he could handle such consistency just fine. This appears to explain, at least at first glance, why Victor got so sick, but further studies and tests will be needed to reach a final conclusion. In the mean time, we are back at honey consistency liquids, which he can still drink from a straw. Any thicker than that might require a feeding tube for liquids to be left in his nose. Fortunately, the tube came out before we left the hospital and he is now happily playing at home.

We are very grateful to all the doctors, nurses, and respiratory therapists who saw Victor at WFU Brenner Children's Hospital. Doctors Mou, Kirse, Rubin, nurses Christy, B.J., and so many others. We could not speak more highly of them. We felt a personal touch in every hand that came to care for our little one. The picture on the left shows Victor with Dr. Kirse, the wonderful ENT doctor who operated Victor on his first day at the hospital and who tracked his progress up until the last minute. The picture in the middle is that of Dr. Mou, from Pediatric Anesthesiology and Pediatric Critical Care. Dr. Mou has been staying for days at the time at PICU and things were too hectic to get a picture of him before we left. Finally, the picture on the right shows Victor with Dr. Rubin, a pulmonologist who has started seeing Victor. Dr. Rubin was just recently recognized with the highly prestigious Forrest M. Bird Lifetime Scientific Achievement Award acknowledging outstanding individual scientific contributions in the area of respiratory care of cardiopulmonary disorders. Thank you all again for everything you've done for our little boy.

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!