September 28, 2008

Seizures, seizures, and more seizures....

Well Gage has been on the ketogenic diet long enough that if it was going to work I think we'd know it by now...sadly I don't think it's going to do it.

In the beginning I was hopeful but if anything his seizures have worsened. I don't think it's the diet causing them to worsen...I think it's just the progress of the syndrome. I don't really know if he's having more of them but they have definitely changed and seem to be a lot harder on him. He's actually had moments where he just cries and cries afterwards.
It's so heartbreaking.

I want to talk to Dr. Z about trying lamictal again. We tried it once along with the dilantin but one of them caused him to breakout in a rash...we don't know which one it was though...and I'd like to try the lamictal by itself and see how it goes. Hopefully they'd check him into the hospital if they agreed to try it so if he did have a reaction to it we could quickly get it taken care of.

I just don't think the felbatol/depakote combination is working anymore and I'm ready to move on and try something new.

Have any of you had any luck with lamictal??? I'm also curious about vigabatrine...I've heard it mentioned quite a bit in another blog but it's my understanding that it's not sold in the US.

Anyhow...Gage still hasn't started school yet...the ramp in just about complete though so I'm thinking possibly next week. I'm just hoping this school works out. I'm not going to lie...I have some reservations about it.
His last school was just so wonderful and I'm really doubting that I'm going to be as comfortable with him at the new one.

We shall see though....

September 9, 2008


Gage had his surgery Monday at Children's and all went well.
The Dr. was a bit shocked at the level of his one point she called it "the mother of all..."
Anyhow...because the prolapse was so big it left him with a much bigger hole than he should of had so she had to stitch it up on the inside and the outside.
Poor guy. Nothing is ever easy for him.

Because of the extent they ended up keeping him over night so they could make sure he took his feeds and medicine well. He did GREAT!!

I made sure to stay on top of the nurses with his pain medicine...Gage has such a high tolerance for pain that by the time he's crying and really showing his discomfort it's too late and can take a long time to get him calm again.
I was really pleased that they listened to me on it and for the most part were really good about giving him medicine every 3 hours and aside from a brief moment today he did awesome.
I am so proud of him.
After each surgery or procedure I realize just how strong and what a fighter he is.

We're home now and exhausted so I apologize for the shortness of this...I just wanted to update everyone.


September 5, 2008

Picture post...

We got these done a couple months ago for my mother in-laws 60th birthday.

I love this one of Gagey...if you look close you can see Aunt Jenny's hand.

Sweet picture of Gage and his cousin Rinoa.

And my handsome boy.

September 4, 2008

Heavy heart...

Hi Everyone...

I just wanted to let you know that Gage is scheduled for surgery on Monday to repair the prolapse. I'm hopeful that they will be able to repair it without having to actually redo it. Yesterday morning he popped out his g-tube for me and when putting a new one in I got to see just how bad the prolapse is. I'm so happy the surgery is in less than a week.

I'm in a bit of a sad mood today...just having a hard time with all the sickness in kids. One family on my myspace list has their 3 year old special needs son in ICU with pneumonia. He spent his birthday their. My heart hurts for this family.

An old friend of mine just had a baby girl a couple of weeks ago and she is in the hospital with a rare heart defect and a lung defect fighting for her life. Again, my heart hurts.

It doesn't make sense. Kids shouldn't haven't to go through things like this. Parent's shouldn't have to see their babies suffer.
But yet it's all around us.

I don't really have much more to add right now...maybe later.
Take care.