I don't know if other families struggle with doctor's not fully understanding Arnold Chiari ii, but we do. I can see why Faith doesn't progress in some areas and it is because of the Arnold Chiari ii. I don't understand why the doctor's cannot see this, one doctor said to me the other day that Arnold Chiari is just part of spina bifida, true in some cases, but Faith's is symptomatic. For us, if Faith didn't have symptomatic Arnold Chiari she most likely wouldn't have developed syringomyelia and Faith wouldn't have had so many challenges. It just frustrates me sometimes when doctor's fail to see or just can't. Our neurologist and neurosurgeons understand it because not only have they physically seen it in Faith they have seen it in the multiple MRI scans. But I digress, I think my brain needs a print off function so that when I have lots to say I can print off the emotions, frustrations and feelings. It usually happens late at night and then if I could print it off I could then refer to it later or recount ideas I had during the dark hours of the night. I am always thinking of ways to help Faith progress further to grow and prosper.
|Joys of our garden|