RFing again - I can find a silver lining in anything

So Sadi has been seizing a lot again. Averaging a seizure every 5-10 minutes, for perspective of what I mean when I say a lot. She is only getting worse despite increasing her seizure meds.

We are actually going back to the Dr in a couple hours and I have to move carseats to do so. Since Sadi has been seizing she has been not eating (hard to eat when you are seizing that much.) So I weighed her, just in case. I have to use the Scenera because her Dad has my van.

She is only 32.8lbs, so she gets to go into the Scenera RF. I am going to be attempting two Regents and a Scenera in my Dad's truck later tonight. Wish me luck. Going to try putting the RF scenera outboard, Regent in the middle and Regent outboard. That way just in case I need her to ride FF I don't have to reinstall any seats and I'll have her Regent. And if we need someone to sit between them, I can put the Scenera in the back of the truck and move the Regent quickly.

We are leaving for Idaho on Friday unless she gets worse, so I'll also have the RF scenera for my niece too if I need to transport all three kids.

See, there is a good thing even in horrible situations. Really, I can convince myself if I try hard enough. I promise.

I'll let you all know what happens after I get back from the doctor. As Sadi is yelling at me "I don't want to go to dr mommy i want to go fly airplane"

Don't we all. lol

Chelsae,
Sometimes those silver clouds are so hard to find, glad you found one today. Hope all goes well at the doctor. Rylan is having a bad day too, 2 gm in the last hour for some reason.

hope she starts doing better soon

(hug) I hope she's doing better soon.

*hugs*I hope sadi gets better and they find the right meds to keep her that way...You are so strong to think positve while all this is going on...Kudos to you...

I hope Sadi is doing better soon!!!

Poor Sadi! I hope she is doing ok and that your doctors visit went ok...

So we went to the dr, did bloodwork. Her Phenobarb level is 33, which is good. It's supposed to be between 30 and 40. We are going to go ahead and push it up to about 36. If that doesn't help, we will be adding another medication. Our Ped is going to consult with a Neuro this weekend while we are gone and we will re draw bloodwork Monday and make a decision then.

Sadi was TOTALLY excited to be riding RF, it was hilarious. So she will ride that way up to Idaho. He gave us permission to go since we'll be right by a major hospital.

I will have to brag and post pictures... I got two Regents and a RF Scenera in my Dad's truck. Go me.

Great!!! (On both Sadi's bloodwork and the 3 accross)

How did you do the 3 across? I will have to post pics but I didn't have enough room. (3rd row Windstar)

Very painfully. Lol. However, we ARE talking about my Dad's 2005 Dodge Ram Quad Cab, I wouldn't attempt 3 across in a minivan except for my Sienna which I don't have anymore.

I had to throw Sadi's Scenera in quickly earlier, and after the dr I went and got the Regents out of the van. I realized the Regents wouldn't work side by side, I can't put one in the middle because the seat is shorter, so the Regent would hang off way too far. I wanted the RF child outboard and Ali in the middle but that isn't going to happen.

So, I put the Regents outboard and the Scenera in the middle.

I started with the Scenera, in the middle with lap shoulder belt. (Locking belts, wonderful!) Go it in rock solid. I never want to install that thing with LATCH again!

Then I did each Regent. As long as I scoot the Scenera over a little closer to the seatbelt buckle it works. If I left it where it wanted to go naturally the one Regent was crooked. There's a little more space between driver's side Regent and the Scenera because there are two seatbelt buckles there. There is still room between the seats to reach down and tighten everything. Even though nothing needed it. If I needed to, there is room.

Getting her into that Scenera might be a different story lol. There is very little room to squeeze her through. We'll have to see how she does. She may decide it won't work, or they might be able to reach each other too well and we might have to switch half way there. But, I definitely thought it was worth a try. Plus now if SIL and I go anywhere I have a seat for the baby. It wouldn't take me long to lower the harness straps for her in the Scenera.

I wish I could get the Scenera in my van, I'd love to keep her RF. But it's not worth it to me to use the seatbelts. I'd rather have her FF in the Regent. But it's nice to RF her when I have the chance.

I'll get pictures up I'm just waiting for them to upload.

I hope your trip goes well! You have more patience than I ever will!

Glad that the dr. visit went well anyways. Sorry she's having such a tough time of it though. I can't imagine how hard it must be for you, so good for you for finding that silver lining.

Kind of OT, but have you ever researched the ketogenic diet? I've heard some interesting things about it.

Yep we've research the diet, the surgeries, ect ect ect.

Sadi had a very hard time gaining weight at first, and she is still a picky eater. So her Dr doesn't feel she would even be a possible candidate for the diet unless it's a last resort. We haven't tried too many medications lately. So obviously that is first as well as vitamins, herbs, ect.

Right now, the concern is why did they suddenly get worse again. The hope is always that kids will outgrow seizures around 3-6 years old. If they don't outgrow them during that time chances are they are not going to. These are the same seizures that she started with as a baby. Phenobarb worked great at the time, it is the best medication for her current types of seizures, so why it isn't working now is a huge concern. There is always the concern that there is a new issue causing more seizures. So we will have to see what the Neuro says tomorrow. She will end up with another EEG, CT, MRI, to rule out anything else. But beyond that I'm not sure what else they will do.

Today she has done a little better though so that's a good thing. I gave her some extra Pediasure, that always seems to help although I'm not sure why. Probably just the nutrients help because she doesn't eat quite as much. I won't complain if it helps though.

Thanks guys. It always amazes me that this is where I come with something like this. Not an epilepsy board. I feel more comfortable here.

She finally went to sleep... only 2am, that's pretty good for her recent trend.

So I will go get some sleep so that I can go on my road trip tomorrow with my new 3 across configuration.