Neurology

Props to the fellow heart mom last night who gave me the expectation to only expect grey from a neurologist. I mean, I knew they didn’t “have a crystal ball”, but I was hoping for … more.

It is hard to not feel like this morning was a waste of time.

This particular neurologist seemed a bit all over the place, so this post will be too.

We did look at brain mri images again, but we really didn’t learn anything new. Everything is small. We all agree it formed that way and wasn’t the result of a stroke or other incident that caused shrinkage (atrophy).  He has partial agenesis of the corpus callosum – it didn’t fully develop. He has cerebral and cerebellar  hypoplasia – both areas of the brain are small. We knew all of this months ago.

Implications are so widespread.

The good: He will walk. It may be forever with the aid of a walker (or gait trainer) but she seemed very sure of this after seeing his supported steps. She even mentioned she could see him riding a special bike someday (but not a bike without training wheels – I told you, all over the place). She feels our best guess for what lies ahead is looking back at how far he’s come. He has been progressing and developing slowly and steadily – with occasional exciting spurts – since heart surgery. She feels he will continue to progress.

Also good: One and done. At this time, we do not need to add a neurologist to our team.

And more good: Apparently, a lot of children with brain malformations do not sleep well and are “morose” … but Kiran sleeps beautifully and is a happy kid.

She also believes he will make friends.  The places this doc went with things….

The not-so-good: He will not ever be “normal”.  This isn’t news.  Quite frankly, I have known this in my soul for a long time.  I wouldn’t want him to be anyone but Kiran at this point.  Again, with the strange places this doc went – He will probably never go off to college. ….

Ok…?  I can live with that.

The hard part was she was very noncommittal about whether or not he would ever use words to communicate.  She said something to the effect of “Of course we hope he will eventually use some words but if not, as he gets older, there are all kinds of apps that can be used to communicate”.

This is hard.  This has been a huge thing on our minds lately – and a struggle I cried over just yesterday.  But.  We live in the right time.  There are apps.

But.  Hey.  I teared up every single time she said he will walk.  And she said it at least three times.

 

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