Friday, December 11, 2009

Extra info...

I just wanted to let everyone know that we are not giving up on Olivia. No one has accused us of doing that, it's just that I felt like I should address it so that we can express how we feel. Our neurologist wanted to gently steer us towards having to decide about making her a DNR in the future. We would never let her "live" in a vegetative state with no quality of life. I have the highest regard for life. Unborn life all the way through a dignified death. It probably comes from my years as a hospice nurse. For anyone who did not see the info on her disease I will re-post it here.

There is no cure and so far no real treatments. Seizure meds and Neurontin for her nerve pain is all we can do for now. Eventually her seizure meds won't work. We hold out all HOPE that God will cure her and she can live a full life!

Thursday, December 10, 2009

December 2009 Update

Not much good news to report. Olivia is still her spunky self. Trying to play with the other kids and just be "normal" but unfortunately her body will not cooperate. We met with her neurologist today. She feels that at some point this fall or early winter she had another metabolic stroke and that is why her left hand is so contracted (she keeps it balled up in a fist). There was not one event like the first stroke when we felt like one side was worse than the other etc. She also witnessed her having constant head drop seizures and stated that it's possible Olivia has literally thousands of seizures in a 24 hour period. She is getting so weak that she needs constant care. We are going to try and apply for nursing care at home for her.

Dr. Chadahumbe is preparing us for the worst after seeing her constant decline. Rick and are are trying to wrap our mind around the fact that one of these times she will start to have seizures that we cannot stop. We will take her to the hospital where they will load her with IV seizures meds which will cause her to go into a med induced coma and the chances of her coming out of it are slim to none. She is just too weak.

We are going to do our best to enjoy her for as long as God will let us. We plan to have a wonderful Christmas with the understanding that one day she will be free to run and play without seizures.