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Thursday, January 6, 2011

The Wait Is Over…

As most of you know, we’ve been dealing with some issues with Caleb since this past Spring.  However, after getting a diagnosis of Tourette’s Syndrome based PURELY on what I said, we began seeking a 2nd opinion.  Our pediatrician ordered a battery of tests, and they all came back normal.  We were finally able to make an appointment with a neurologist in Atlanta; however, she didn’t have any openings until January 7th.
It’s been a long 6 months, but our wait is now over.  Brian, Caleb, and I are heading up to Emory Children’s Center in Atlanta to meet with a pediatric neurologist.  Over the past month or so, we’ve noticed a decrease in Caleb’s tics; however, this is very common.  The big term used with Tourette’s Syndrome is wax and wane (which Brian cannot STAND to hear).  That means that the tics can come and go and change over time.  We’ve seen Caleb’s tics change, we’ve seen them be extremely noticeable, and we’ve seen them be hardly noticeable at all.  It all still baffles us, and we still don’t really know what’s going on.
We do believe that there are more issues than just the tics.  Caleb has always had sensory issues (again, we didn’t think much of it).  He doesn’t like tags on his clothing, he frets over seams on his socks, he frowns over issues with his underwear, etc.  We joke with him that he’d just run around naked if he could, but we all know that’s NOT happening.  So, this is another issue we’ll bring up tomorrow.
There are some other issues that we’ll discuss as well, but I won’t go into those here.  Just suffice it to say, that we can’t say that Tourette Syndrome is the only diagnosis we’ll hear.  We truly don’t know what’s going on, but we want answers. 
We all know that our healthcare system is changing, and we want to do everything we can to help our boys.  We do not want something going on their medical records without thorough evaluation and examination.  So, that’s what we’re doing.  We’re being the advocates God has called us to be, and we will do everything we can to help Caleb.  We just want answers.
So, please keep us in your prayers as we travel to Atlanta tomorrow and seek these answers.  I do not believe we’ll come home with all of the pieces to the puzzle; however, I’m hoping and praying that it’ll all start coming together. 
I’ll be back with an update as soon as we know more…

5 comments:

Lin said...

Thank goodness the day is finally here! At least you can get some ideas on what this is and where you should go next. I agree with you that you really need to pursue everything before he is "labeled". I wish you all a good doctor, a safe trip, and some positive outcomes. Oh--and lots of hugs and love. I know how very difficult this must be for you all. Hang in there, pally. We'll be here waiting for you when you get home.

SuzyQ said...

I am thinking and praying for you, Caleb and Brian. I know that you have anxiously been waiting for this day. I pray that you will get answers!

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