I made it!!

[Tylersmom]

Wow it's been so long! Im glad the forums are back up.

A little update on Ty

He is now 7!!:eek: He has been siezure free for a year and 6 months with the possibility of a few seizures recently but nothing too bad.

He is having lots of trouble with his Neurogenic bladder. And we found out he is hyperextending his knees. So we are trying to figure out what to do for that. He is also having tingling in his left foot which we dont know why.

Im still fighting for that IEP for him. He is having difficulty in school still. He is also now tube fed. He has a feeding button now. Which is great b.c now we know he gets all the calories he needs.

That is that for now. I think I bombarded ya enough!

Tonya

[myson-andrew]

Tonya, Andrew has had a ton of issues with neurogenic bladder. He has a vesicostomy now due to basically being foley dependent. He has had it for about 2 years.

Alison

[Tylersmom]

We have been cathing Ty for the last few months every four hours. They tried to paralize his bladder with meds to try to retrain it but it never worked. They added another med to try and help things and I remember her saying that our options may be either the pacemaker next to the bladder, or the bladder augmentation surgery. They have not done the pacemaker at that hospital and it would need to be done somewhere that has done it on children. He goes for another formal urodynmics test the end of this month. It seemed like things were turning around but now im not so sure.