Waiting...

So this week we are waiting to hear more about what treatment will give Stephanie a better quality of life.  In my last post I mentioned that she couldn't have the corpus callosotomy due to her increased intracranial pressure.  We saw the neurosurgeon last week and discussed alternate options.  We could try the Vagus Nerve Stimulator and give her a VP shunt sometime afterwards to deal with her pressure.  I still don't have much hope that the VNS will make much difference for her.  The other option is to go ahead with the shunt first, hoping that it would decrease her pressure enough to allow the surgeon to perform the corpus callosotomy.  Either option is still months worth of fine tuning the setttings (VNS and shunt both need to be set to an adequate level to work for Stephanie).  I emailed the neurologist last week and he advised he would be speaking with the surgeon this week to come up with a plan.  Surgery could be for the end of June/beginning of July.

On another note, Stephanie's collar bone is healing well and she no longer needs to wear the figure of 8 brace!  What a trooper!  I still cannot believe that this kid broke her bone and continued with daily life as if nothing had happened...we can learn from this!

Oh, and one of the Make-A-Wish volunteers called last week to let us know that Jewel has granted other wishes and that they were still in the process of contacting and making arrangments.  In the meantime, they will be purchasing Jewel merchandise to send over to Stephanie to enjoy.  How great is that?!  I guess I had better get moving with obtaining a passport for Steph...yikes!