ARX update

I just couldn't update the blog after the Dr. Genes visit last Friday.

I felt like I'd been hit by a bus. A really really BIG bus. It takes time to recover from something like that!


And the thing is...we're still in an if-y zone anyway. Waiting to hear back on Toby's labs. If Toby's test reads positive...the same as Trevy's...then this will all be a very-scary but very-moot coincidence.

Dr. Genes spent over an hour explaining to me why she doesn't believe that will be the case.

And yet because it could be the case...

I mean how many odds has Trevor blown up already? What's one more? Soooooo like I was saying...because it could be the case...I'm waiting to worry until I know for sure.


~Mama Skates~ said...

good plan - no need to worry about the unknown...thinking of u love!


Monica, James, Connor McGuire said...

I so meant to ask you about your appointment! I'm so sorry, I was all in a tizzy about Connor. I'm praying for you guys. i agree, it's really best not to worry about things until you know something definite to worry about! This coming from the world's biggest worry wart, i can give advice much better than I take it! Please let us know what you find out. big {{HUGS}}

JSmith5780 said...

I am HATING blogger today!

Anyway, what I have tried to say, like 4 times is that because theya re looking for one specific mutation for Toby, his test and results should be quick.

No matter what, remember, they still know so little about genetics. Just becuase some variations on the ARX gene are "bad" doesn't mean Trevy is going to be like those cases. Let him prove himself his own way!

Shanna Grimes said...

I second that! I have tried commenting like 3x's from my phone and it just keeps pooping out!

I feel ya sweetie! Dr. Genes is our next appt. I am starting to go numb to all of it. I feel like they are not going to tell me anything I'm not already prepared for. Either I passed TSC to the kids, it's spontaneous or it's something that they've never seen anyone else have.

The fact of the matter is, K&T are still doing pretty awesome despite all these obstacles. Which makes them both heros!

Hang in there sweetie! You guys sound strong and hopeful, from the sounds of your latest post. Stay strong. I will be praying for you guys. I hope Boston will uncover the answers you are looking for.