Tempering anger with direction

>> Thursday, May 31, 2012

Sometimes, it's best to let a sleeping dog lie, and then other times...wake that sucker up and let's get on the road.

We woke it up and now I have the price to pay.

It's not about Bug this time, it's about test results. Results that were NOT delivered in August when they were identified by the lab as needing treatment. Test results that *we* demanded and were told were completely normal. Test results that, until yesterday, we were just grateful to have. Today, I am trying to be grateful that we just have them and we have a direction that may, or may not, help my little man. BUT knowing that the lab recommended treatment in AUGUST...yes, August, when he started the Keto Diet, August when he missed so much school because of the side effects of the diet that I almost got him in home classes. Yes...August...we could be six months into and, possibly, less than the several HUNDRED seizures we have seen in that time.

Should I have gotten the print out that was missing, MISSING, from the stack of medical records they gave me in July? BTW..the results were actually done in MAY and faxed in August. I can't even wrap my head around an entire YEAR of treatment that we missed and literally, 3 instances of Status, one Keto failure and the on again off again sounds he has been making. No, I HAVE to stay focused on moving forward.

Still...lesson learned. Test results will be COMPLETE and IN MY HAND within 4 weeks of the draw (blood, LP or whatever method). They may have been too busy, or too focused on him being pretty and just having 'bad brain', but Daddy and I knew there was SOMETHING to find and Daddy and I are NOT too busy to follow through. So, I will be a living nightmare for someone NOT doing their job from this point on. I WILL NOT look back and wonder, I will NOT subject him to more than he needs to be bothered about. Screaming over and direction obtained.

Damn it.

In the last 48 hours we have seen 1, let's count them on 1 finger, seizure. 1. He may be having more activity than that but what we are seeing, and can CONFIRM, is 1. Hooray, we're number 1.

For now.

4 comments:

Jennifer May 31, 2012 at 9:39 AM  

Oh God honey, I'm so sorry that they did this to you.But I am thrilled to hear of Bug's progress...

Holly Elizabeth May 31, 2012 at 10:35 AM  

Yeah, try not to look back, leave the past in the past as painful as it may be. Glad to know of how much better he is doing! :-)

Emilie and Branden June 1, 2012 at 9:37 AM  

I am pissed for you. And for myself.

Nett June 4, 2012 at 11:20 AM  

Deep breaths....slow deep breaths.

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