Saturday, November 13, 2010

If I only had a brain…

The good news is that Truman has a brain!

OK…that was a bad joke.  Of course he has a brain!  And it is a beautiful one too.

We got the results from our neurologist finally.  He called us himself…which is one of the things we love about him.  It is also incredibly terrifying when I hear his voice.  Why would the doctor call if it was good news?  Right?

But it was good news…mostly.

His brain has “minor changes” that do not “raise any red flags or give a specific diagnosis.”  He has all of the parts and pieces and there is no evidence of degeneration.  All really great news.  Of course hearing that there are any “changes” makes my skin crawl but with no visual it is easier to to deal with.

The hard part is the thing we have struggled with throughout this entire process…we don’t have an answer.  We know something is wrong but we can’t figure out what it is. 

His neurologist understands our frustration.  Every test that we take we pray for a negative result but with every negative result we are further from understanding what is going on with our son.  He has tested and tested and tested and just can’t find the answer.  He cares enough to call us personally to talk through the next steps and to apologize for not being able to find a diagnosis.

Have you ever had a doctor apologize to you?  Me either.

So we will continue with physical, occupational and speech therapies.  We have an appointment with Cranio-facial in January along with another Swallow Study.  We are also due to go back to Genetics.  Every day we will keep working with him and trying to give him all of the support he needs to get stronger, gain balance, learn words, etc., etc.  In other words—we don’t stop fighting but we don’t know what we are fighting against.

It feels like we are flailing around in the dark just hoping to land a hit.  And it is so hard for people to understand.  I keep hearing “no news is good news…right?”  Well of course!  We do not want ANY of the things we have been testing for to be the diagnosis.  But maybe if we had a diagnosis we would know that we were doing the right things for him.  Or we would be able to prepare for the future.  Not knowing what could happen next is impossible. 

Good news…mostly.


  1. No. GOOD news is good news. Some sort of answer, preferably something that's an "easy" fix is good news. NO news is infuriating and terrifying. You have a great team of doctors on the job, and they WILL find out what's happening and what to do to help your Mr. T. And you'll keep loving on him and giving him everything a child could ask for in a mom. I'm glad it wasn't bad news but sorry you didn't get an answer.

  2. I'll take the mostly good news over bad news any day. I hope that one day you will get your answer. But in the meantime, the positive attitudes you guys have and the acceptance you've come to terms with will take him very far in his development.

    I love you guys very much.