Written by mom Linda
THIS IS THE BEST PART!!! NO, NONE, NADA... ahhhhh I could fill this whole block with just this and sit back in my chair and stare at it for days...truly. Isaac is doing MARVELOUS. NO SEIZURES SINCE OIL!!!!! Can I write it in the sky, or carve it in a pie?? His Neuro Doctor and I are reducing Keppra, he was on 4 a day huge amount 750 mg each we are now down to only one and Isaac will be free of it in one week. With each reduction we are increasing the oil a bit.
We have done so many things we have not been able to for the 13 years of his seizures. One being free movies in the fall at the Imax theatre. I thought he has done so well I think he could handle it if he uses his ear plugs (he could not tolerate an inside theatre, he is very optically triggered). We made 7 out of 9 of the free Saturday morning matinees they offered. Isaac thanked me each trip home after probably 20 times. He is the sweetest.
Each reduction of drug I see another piece of him emerge that has been buried for 13 years. He no longer requires sleeping in my bed on the weekend because most of his seizures would be at night. I was sleep deprived for 6.5 years of his illness, my level of sleep now is intoxicating. We are" Livin Large" I tell him.
I use the entire grant for his oil. Each month I face his oil or the mortgage. The grant is massive in our lives. I am grateful with my every breath and for Isaac's every breath. My closest dear friends are amazed and in awe. They share in our joy.