seizures... (warning, its a whine)

[Denae]

This is a complete whine, so if you don't want to hear me sob about how unfair life is this is your chance to turn back....

About an hour and a half ago in the middle of no-freakin'-where on the highway Ri has a nasty seizure, I was watching her in my mirror and kept thinking, its almost over, its almost over- after almost 5 minutes I pulled over and watched her another minute, it seemed like it was "slowing" down, but then she went stiff and it started all over again. I watched her and wanted to be sick. I knew we were in the middle of seriously no where, we had just met up with my mom at the half way point with Brittany to spend a week with her, she lives just outside of Asheville.

I got her out of her seat and gave her diastat, the d@mm thing stopped, I sat there and held her in my lap and boo hoo'd, put her back in her seat and no more than start the van back onto the highway and she started again, it was short, not even a full minute....

Now we are sitting here watching and waiting.. one more and we are back in the ER, she is sleeping peacefully, hopefully the rest of the night without a seizure...



I can't stand this....

[Tracy Sheppard]

{{{{Denae}}}}
How scary! Praying that is it and she sleeps thru the night. NO it isn't fair!!!! NOT fair at all!!!!

[mpalmer118]

My heart is breaking for you. It frickin' sucks to feel so helpless.

Hoping and praying for a quite night for you and Riley.

[laurensmom]

{{{Denae & Riley}}}

[lacyndarella]

I'm so sorry. It really does sound scary and doesn't sound at all like you are whinig. It really is unfair!

Lacy

[Emeric's_mom]

Poor girl! :( And poor you as well! Do NOT feel like you're whining, I'd be doing the same thing I'm sure... That's scary and you have every right to talk about it!

[J&K Mom]

{{{HUGS}}}

I know how it feels to have a kid seizing in the car and feeling helpless. Jake's 2nd ever seizure was like that. I was scared to freaking death! He had stopped breathing and was blue. I was only a block from the hospital though. When I got there, he had stopped and I just sat there in the parking lot holding him not knowing what to do!! I did go in.

Luckily you had the diastat. I always hate it when you give the diastat and the seizure stops as soon as it touched their bottom!! I always have to remind myself that even though she didn't need it to stop THAT one it's possible if not likely that another one would have followed if I hadn't.

Did you have anyone else in the car with you?

[RathyKay]

(((Hugs))) I pray Riley got some much needed rest tonight and you did not end up in the ER.

[AnnMarie]

I am so sorry poor Riley and you had to endure that...It has happened to me also. I hate seizures! I hope she gets the rest she needs..hang in there and keep fighting. AnnMarie

[Denae]

She slept ok until about 2 this morning when they started again, they were all pretty "mild" only lasting a minute or two at the most.

she is sleeping now, and is quiet. We did give her Diastat again this morning just before 7 and no seizures since then hopefully she will sleep for a little bit longer and be better when she gets up... we did avoid the ER...


Micky- yes I was alone in the van, I had just dropped Brittany off with my mom a few miles before so I didn't even have her to at least watch Ri for me while I drove... I HATE having her in the back when we are alone in the van for that very reason.

[langansmom]

(((((hugs)))))

That just plain STINKS. I am so sorry, Denae. I obsess every time I am in the car with Langan and we're on the open road somewhere- fearing just what happened to you guys.

I hope things turn around soon. (feels like I've been hoping that for a while for you guys so MAYBE it'll finally be Ri's time for a break).

(((((hugs)))))

[Mother's Heart]

I'm sorry Denae. It is so hard.
I've been there too, too many times sitting out seizures beside the highway, just me and the two little ones. Praying it ceases without the need for a too-far away hospital. I'm really glad you had the diastat available and that it did stop.

ya know, most parents travelling with their little ones have to stop for diaper changes and maybe carsickness, while we find ourselves stopping to manage seizures, respiratory crises, change splints, give tube feedings and meds, calm meltdowns, monitor heart rates; we know where every hospital is along our routes, and where electrical outlets are where we can plug in medical equipment, and on and on....it's a world most parents have no concept of...and yet, we don't question the need, and we CAN handle it. You are so much stronger than you know. The tears and frustration are not signs of weakness....just signs of how big the challenge is at that point in time and your courage to face it. I'm so glad you have Riley, and that she has you to love her.

many gentle hugs for you and your girl,
cj
\o/

[Little JT]

I'm so sorry. I hope Riley is doing better now. I get that sick feeling in the car when I can't see Jake. I'm always glancing in the rearview mirror expecting to see something. One of these days I'm going to have an accident :( I swear, driving and when I go to bed at night are the two times I worry most.

I'm echoing the "seizures suck" chorus.

(((((HUGS)))))

Amy

[Denae]

Thanks guys, this is why I come here.. My heart aches, driving home the whole way after work today I was on the verge of tears, I wanted someone to vent to, some one to talk to and I realized again that there is really no one that REALLY understands they way you guys do....

Today was tough being away from Ri....

[mpalmer118]

Beautifully put, CJ!

Denae--- ((((hugs))))