Introduction into Julian's Medical Journey

Today, 9-9-09, Julian had his first appointment with a Genetic doctor at Akron Children's Hospital in Akron, Ohio. I figured that I would create a blog to document his journey. My reason behind 'putting it all out there' about my child is simple. We need answers. We need help. We are stepping outside of the norm to hopefully finally obtain an answer. We are hoping to maybe learn of other children/parents who read this and think ' that sounds so familiar', or a medical professional or has ideas, or even an organization who might be able to help with answers and resources. We are doing what we feel we have to do for our child. Sitting back and waiting for the medical field to figure it out for us is not working. With that being said, I sat down to write this and realized that Julian has been through so much already. So, I am going to write an update blog, then document things as they occur in his life. I will most likely miss alot, it's been a pretty stressful day, but I hope to get the outline out on this blog, and I'll add little history stuff as it becomes neccesary later. Thanks again for reading.

Julian was a twin, and at 8 weeks and 2 days into my pregnancy with him, we lost his faternal twin. He was born at 38 weeks gestation at 5lbs 7 oz. and 18 inches long. Besides loosing more weight than his doctor would have liked and being jaundice, he was healthy. He had high apgars and was very alert.

He spent his first year of life with a constant infection, mainly ear and respirtory infections, and threw up alot. He didn't sleep much at all. His gross motor skills were delayed, but his cognitive development as always been advanced for his age. He sat up at 9 months (he also begin talking phrases then), crawled at 13 months (stopped talking completely by then), and walked at 15 months.

Julian, at almost three, just got on the graph part of the growth chart. Until then, he was always way off. He is small for his age. He had been using some signs (ASL), but he has not been doing much signing here lately. He as a bowel problem that is still undiagnosed, even after test show he as a malformed ciliac. Due to his malabsorption, he takes zinc, iron, a mulitivitamin, and drinks four 8 oz boost kids essentials 1.5 a day (each with 27 grams of fat) just to maintain weight and nutrition. He also takes 15 mg soulutab of prevacid each morning for acid reflux.

Julian has had tons of blood test, an MRI, an EEG, bowl exploration, and now a fragile x test in which we will not get the results for four months.

Other than Julian's weight issues and immune/digestive issues, his behavior symptoms are the most pronounced. I'll get into that in future blogs.

I have decided to write this blog, and keep it up as we go down this journey with our son, in hopes that we might run into someone who might be able to help. Someone who might have information, or a possible diagnosis. If someone knows something or as any ideas on what my son might have, PLEASE tell us. My email address is queennlove2005@gmail.com, my husbands is ravenwolf8301@gmail.com. Thank you for reading.

Julian will be 3 October 13th this year. As of right now, we still have no answers as to his medical condition, although every specialist he sees regularly (gastrointerologist, neurologist-Abdalla Ali Abdalla, MBBS, pediatrican, pediatric eye doctor, speech and hearing, and genetic doctor-Thaddeus Kurczynski, MD, PhD) all feel strongly that something is wrong medically.