The Cleveland Clinic: Finally Home

We just arrived home and I’m taking a short break to touch base with all of you.  Don’t you feel lucky.  😛

We received the results all the testing that has been done,  with the exception of today’s biopsies.  Basically, everything has come back normal or within normal ranges. The chromosomal microaray came back negative on all 2000+ genetic disorders.

This is great news and I should be happy, right?  Well,  yes and no.

The truth is that while it’s great that everything came back negative,  at the same time it’s beyond frustrating.

I say that because we still don’t have any answers.

The only things that was confirmed today is that Gavin has marked autonomic dysfunction. That translates to significant autonomic dysfunction.  The reason for all the tests was to try ruling out anything that could be causing the problems. 

So far,  there is no known cause to Gavin’s health related problems. 

When the biopsies come back in a few weeks,  hopefully they will provide some more information that will help nail this down.

Gavin has been placed on additional medication to force his body to retain water. The goal with this is to possibly lessen the orthostatic issues,  ie heart rate and blood pressure issues.

Gavin is not allowed to participate in vigorous physical activity.  What about the daily tantrums? I would consider that extremely vigorous.

The bad news is that Gavin will not be medically cleared for residential care until we figure out what is going on with him. That is definitely going to put a marked delay on a major part of Operation Hope. At the same time,  I completely understand why.

That about sums the day up for now.  I might have more to say later.  For right now,  I’m beyond exhausted and I can hear Gavin beginning to throw a tantrum, in his room above me.  Le sigh…..  🙁

This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me.

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Batty

Sorry for the good/bad news.  I know when my youngest was diagnosed with CP at 9 mo of age I was devastated and relieved–devastated at what was coming barreling down the tracks at me and relieved that I could now see the train and give it a name!  Hang in there–a diagnosis is coming.

lostandtired

@Batty I totally understand the idea of the light at the end of the tunnel being a train. 🙂

Thank you

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