8 years ago
This is the story of a boy named Austin who has a condition called neurocutaneous melanocytosis (NCM). He has a shunt in his brain due to hydrocephalus. He is a survivor and a fighter. This is also the story of his family and what it's like to live with a life threatening condition.We hope this blog will help people understand this condition. We also hope to use it to reach out to parents of other children who have NCM. You are not alone!
Thursday, January 22, 2009
MRI results
Just wanted to update that Austin had an MRI of the brain on January 13. It showed no changes, which is good news. He does not have to have another MRI until July. We obtained a copy of the MRI and sent it on to Nevus Outreach, through a new program they are now able to have MRI's read by the pediatric radiologist at UC-San Francisco who is the worldwide expert in reading and performing MRI's to detect NCM. The best part is they have a grant to pay for this so it is at no cost to us. We are very happy to have this opportunity. Austin also saw his neurologist, Dr. Keating on the 14th. Of course, after praising her so effusively in my last post she is now leaving Children's Memorial for Minnesota! So we will have to figure out what to do next on that front. Her opinion on Austin's development is that he is catching up quickly on gross motor skills and is not behind at all in cognitive or fine motor skills. In fact she thought his fine motor skills (using his fingers) were excellent. At almost 17 months old Austin has taken a few steps and is standing alone briefly. He walks holding onto furniture and can climb the stairs all the way to the top. He has been crawling on all fours for about a month and is very fast! He is not saying many words yet, though has a few animal sounds. I have asked for a speech evaluation and have been told that it is being arranged. We are so happy with all of his progress!
Subscribe to:
Post Comments (Atom)
My Blog List
-
-
9 years ago
-
11 years ago
-
12 years ago
-
No comments:
Post a Comment