Our Battle

The last few days have been somewhat of a blur for our family, the overwhelming support from our loved ones & complete strangers, little sleep & lots of activity for our sweet lil monkey.  The new seizures that Nick has been experiencing are multiplying & keeping him sedated for most of the day which usually keeps him up at nite. The doctor has increased his phenobarbital but it doesn't appear to be working on this type of seizure.  So the started him on another today. Keeping our fingers crossed this is the solution. The most we have seen in one day has been 5 but that is 5 too many, in our opinion.  On Monday, Nick will be hooked up to another EEG but this time he  gets to come home.  We'll be able to record the seizure activity in hopes that when they take it off on Tuesday morning, they'll be able to identify what type of seizures these new ones are & what is best to treat them.  

Our goal is to get him off this medicine but find a way to control the seizures. The homeopathic remedies we've tried aren't working either but I have not given up on that approach just yet..With each seizure, he is fighting for his life & exerting so much energy (which we are trying to contain so he can be as strong as he can)...

One thing is for certain, we will not put the limitations on him that the dr's say will never be. They say, he'll never crawl, walk, talk but we won't allow that to be true...We are willing to fight with every bone in our body to prove them wrong & to give our son the life he deserves to have..

 I think this quote helps me out especially on days when I feel defeated.."Letting go, embracing the here and now, loving, breathing, and worshiping the gift of now, helps me more than holding on to some days in the future that may or may not be as I expect them to be anyway." -Dr. Rick Benedict