Easter and then some.

>> Sunday, April 5, 2015

Bug is doing pretty well, he is smiling and laughing when we tickle him, and he is just so much happier.

He hasn't seized, that we have seen, in 3 days. Which is really nice after the last two weeks he had. Nothing horrible just seizing daily. Still, when I want to take his picture and I call his name, he looks at me.


You can not know how huge of a deal that is. How my heart smiles when he just turns his head. It's silly, it's simple and yet, it is amazing to have him back in our world after being so long in only his.

Easter was lost on him. He didn't look for his basket or eggs, he didn't want to open any candy. He just sat and played with his blue car, spinning the wheels.

And tomorrow is a big day. Or tomorrow is another day like every other day with nothing new to tell.

If it IS a big day, we may have some answers. His genetic information is available for viewing tomorrow (as if we didn't view it every day by just smiling at him). Tomorrow, the whole exome testing will be discussed.

I'm terrified, excited and...nervous. This is big. A REALLY REALLY big possibility for us. We have been looking for this for 9 years. Looking to find why he has so many markers for a genetic issue. Why he SHOULD test positive for Trisomy and doesn't. Why he is so damn healthy in EVERY other way but these seizures. He is so profoundly delayed and has so many really bad things neurologically, but he is healthy and strong. He has all these seizures, can not communicate (not just talk, but COMMUNICATE his needs or wants), he can not potty in the toilet, he can not understand danger. He wanders away, he will trust anyone and he does not understand the simplest of things. BUT...he has a strong heart, great lungs, perfect eyesight, decent hearing, can walk and run and eat and swallow and is not fragile in any way. And WHY? He SHOULD be fragile with all those delays. He SHOULD be completely breaking down, we expect it, but he isn't.  His geneticist at PCH was sure he had something but 'nothing comes to mind'. He recommended that we look into it more and then his Neurologist at the time said: It would be pointless. Hmph. So it really IS possible they will have some actual findings for us.

I want to hear: we found something. I want to hear: and we can do something about it. I want to hear: It's an anomaly and none of your other children have it.

I am prepared to hear: Unremarkable and within limits. It's what we are used to.

I have been doing what I can to ignore it, this pending realization of disappointment, possibility or despair. It has me reeling in so many ways. I shouldn't be so focused but there is so much to focus on! A million scenarios have been going through my mind, playing out in my subconscious while I sleep, I can not get away from it. At least, tomorrow, I put that part to rest. Either we will have some AH HA! Or we will have more of the same. The world may be different tomorrow and it may be more of the same with more action, nothing to do but see what we see.

Breathe. Breathe.


Dave and Eden April 6, 2015 at 3:57 PM  

Reading htis, I choked up when you write about the joy when Bug responds. I have the same response the rare times Russ lets us into his world. We have the same questions with Russ- what is causing all the seizures but doesn't effect his health, just his brain? PCH also suggested whole exome sequencing because there are no chromosomal abnormalities. Let me know how it goes. At least we are there with you, in the same half-sinking boat.

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