Skip to main content

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!


::smile::


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.

Comments

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

xoxox,
sharon
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.

Popular posts from this blog

I cried when I got the news

I felt like such a heel not going with Trevy for his first post hemi EEG. Yeeeeeees...Jonathan went with him. Yeeeeeees...he's just as good as me. But still! He's my baby! I was instead sitting on floor 6 east waiting for Neurology to get their boots here and help me sort out this medicine mess! Seriously it's like a bad joke...how many Neurologists does it take to write a bloody script? And fax prior authorizations? Cause Trevy's been back for hours now. And I'm STILL waiting! Anyway... Jonathan had just stepped out to meet the pizza delivery guy when Dr. EEG made his rounds. Of course I asked immediately if he had read the EEG. Of course he had. That's why he was there afterall. And I cried when he told me... that for the first time in almost two years. For the first time since this whole crazy mess began. my baby's EEG is completely normal! Side Note: It's super fun to sob in front of Japanese men and watch them squirm When I kept repeati...

I sure hope...

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...

it's like being asked to the prom...

only MUCH MUCH bigger! I had noticed (yes...I stalk my site meter!) that a government ISP had logged onto Trevor's blog. Whoever it was had spent a good deal of time hanging out too. Followed a few minutes later by a government ISP...hailing from Washington. As in DC! My eyebrow raised. It was just kinda odd. Note-able odd. You know? Anyway...later that day (last week) I was folding laundry & thinking my crazy insane thoughts. Along these lines... I hope I'm not saying anything I shouldn't! Maybe I made somebody mad? Wait a minute! I live in America! I'm allowed to say anything I want! Aren't I???? A shout from the other room interrupted my thoughts before I had a chance to further mull. It was Jonathan. I had just received an email. **Side note...he's always doing that! Reading my emails! Sheesh!*** The said email was from a US Senator's aide! Asking if he could speak with me. Little ole' hardly has time to splash some make-up on ...