Thursday, November 27, 2008

Updating for Jill

Hello everyone,Just wanted to update you all. I'm having my mom update our blog as children's hospital in St. Paul blocks my blogger login. I'll be working on that on Monday when all the personnel is back from the holiday. Also we cannot have anything on the unit from home that plugs in- so I'm limited to the community computer which is very frequently in use.Matthew is doing well. We arrived very safely on Wednesday. They hooked him up to 24 hour EEG, and constant video surveillance. That has proved to be interesting! He is always watched; that way he can coorelate what his brain is doing with what he is exhibiting. Today the neurologist came in (and by the way, we LOVE him-I'm working to see if he'll move to omaha!!) and the plan will be to watch him carefully again today and mark all of his spasm activity. Tomorrow, we may put him on prednisone, which is very similar to ACTH (a commmon med used for infantile spasms) but without the yucky side effects. He has read some studies that show very similar results with this medication and ACTH. There is also another medication, called vigabatrin, that seems to work very well, but is not available in the US. He would like to most likely start him on that once he orders it and it gets shipped here from Canada (it's not FDA approved, due to the fact it can cause some tunnel vision- a risk we're willing to take). He's thinking we'll hopefully to be able to come home by Tuesday, if all goes as planned.Mom and Dad came and spent Wednesday and today with me-we even found a place to serve us turkey dinner. It was YUMMY! My cousin, Sara is coming tomorrow and staying the weekend with me. It really is been good up here! I've even started talking to some of the other families up here. There are 3 families here from the Omaha area! And there's also another little baby here named Matthew (he's 11 months) and he has infantile spasms, too! Crazy. We're not the only ones out there struggling with nasty seizuresI'll try to update more through my mom this weekend- or maybe figure out how to get on my blog. Just know we're doing well, and that my internet is VERY limited (I'm having withdrawls). I'll try hard to keep in touch. You can always email me too, my email is I get to check it once a day or so (usually in the evening when all the kids are in bed!) Blessings to all!

1 comment:

Lisa said...

Hi Jill!

Still wondering why thy won't try the ACTH. I know it didn't work for Elisabeth, but it does have a very high success rate. And it seems that the side effects were not as scary as the possibility of vision loss. Just thoughts.

Best of luck! Get rid of those yucky spasms!!!!!