Challenging Times But SO Worth IT!!!!!

Our latest Blessing little Samuel has been diagnosed with a condition that we are unsure how it will impact his development. He is missing the end piece of his Corpus Collosum(CC) known as the splenium or partial ACC (Agenesis of the Corpus Collosum).... What is this you might ask? Well the CC is the communication center for the brain that allows the left side to talk with the right side. The splenium is know to be where the visual process often take place. We were very blessed to discover this problem early as it is not always detected especially with someone like Sam who is not drastically affected. I simply noticed that his eyes were not tracking correctly which in itself was difficult as he has great hearing and was following every sound including footsteps. Once we made a trip back to the doctor he noticed a slight tremor in Sam's eyes and rather than saying "lets just wait and see" - he ordered an CAT Scan of the brain. The results only revealed a slight swelling on his occipital lobe which is where vision processing takes place. However, it was enough yet again that our doctor ordered an MRI immediately. As I awaited to hear whether or not there was indeed swelling - you can imagine my concern when the doctor himself called with the results and he stated that " Samuel is missing a part of his brain". Hmmmm swelling vs a missing part of the brain. Now it was time to worry!!!

I did all the possible research one could do online and by the time we saw a neurologist at Riley hospital in Indianapolis. She deemed me a Collegue and well educated and asked why I made an appointment. Although this was flattering and I know that my online medical degree*laughs* I wanted as many answers as possible did she have any of these? Nope but another genectic neurologist thought the possibility of a "syndrome" and mentioned a few that had liver and heart problems - However, all his test were negative for any abnormalites with his heart and liver which was great news. We have since also had a follow up ultrasound on his head as there was some concern of possible hydrocephalus but this too was neagative.

SO now Samuel continues to see a Physical Therapist weekly who attends our church and is great to work with. He is already able to roll and is getting stronger with his head control which was before somewhat floppy due to low muscle tone. He is tolerating pushing up on his hands while on his belly. Eating has been difficult due to his high pallette (upper roof of his mouth) solid foods that is - no problem demolishing a 8oz or more bottle. We also just recently saw a pediatric opthamologist who says that his eye itself is healthy and that his vision difficulties are mainly going to be related to his brain processing the visual information he is taking into his eye. At this point he has limited interest in toys due to his difficulty seeing them . He is starting to bat at hanging toys and starting to enjoy textures on some of his toys. He is a huge music fan and makes attempts to sing along.

My most favorite of his accomplishments is that he said Mum Mum weeks before he attempted Da Da and that took coaching from Dad to practice the sound. When he fusses it usually starts with mum mum and ends with Da Da Da Da DAAAAA DAAAAAA

I will try my best to keep you updated with his accomplishments - My goal for 2008 to keep more updates on this blog.