Communication

In all of this mess of trying to keep track of and communicate the boys needs, I've realized I must suck at this very thing they struggle so deeply with.  I've made mistakes in my wording that has allowed drs (and wow they can really get off on some tangents!!) to go in completely the wrong direction.  I do believe I'd be better at it if I only had 1 I was keeping track of and advocating for... but I obviously have 3.  I've been totally right about things while appearing to be wrong, like the iron poisoning, but we kept looking at lead.  It was still heavy metal poisoning and wow there was a TON of it.  Kept wondering why my blood tests kept coming up so high on iron... duh. I also forget details as years go by, and they are important details.  Like remembering that Aidan used to be just as hyper as Jace, before the seizure meds.

I've tried different methods, and the only thing that is clear at this point- I must find something I really can stop and record all details as they happen, with some sort of prompt for questions to answer.  Writing it down doesn't happen.  I've tried and tried.  I can never get to the notebook and paper when it's fresh in my mind.  So my details are sparse because I didn't ask or look for specifics.  

I never thought to ask Aidan and Jace if their leg pain was in both or one or even which one.  So when I spoke with the neuro about it, I used the word "legs" because I wasn't specifying just speaking generally.  So he naturally assumed both and didn't ask to make sure.  (Admittedly, I probably wouldn't have.) 

Well it turns out, it's one, and the same one every time.  Grrr!

So I'm on a search for a way to both record and track, that really works for us.  I've tried some apps already and they are seriously lacking.  But maybe I can tweak something somehow.  I simply can't keep trying to remember and write it down later.