Belated Merry Christmas! I know it's been awhile since I last posted, and alot has happened since then. Upon our return from Disney World, my husband and I sold our house and bought a new one! Needless to say this was stressful and time consuming...but we are excited to make the big move to just outside our city limits. Stephanie will be getting a much bigger room finally and no stairs! Unfortunately, just after accepting an offer on our house, with a possession date of February 1, 2013, Stephanie's Neurologist confirmed that we would be moving ahead with her second brain surgery, Corpus Callsotomy. The kicker was that the date is set for January 29th!
Luckily we were able to find a great home and will move for January 19th, giving us a few days to get settled before the big surgery. The previous surgery was a big risk and we thought it would help Stephanie get some of the relief she needed from all her seizures. This was not the case and she continues to suffer from numerous daily seizures. Now we are faced with completing the separation of the two hemispheres of her brain. A recent MRI showed some tissue still connected in the anterior part of the brain and the 1/3 that was left intact in the posterior part of the brain. The surgeon will sever the remaining fibres of callosum and the two hemispheres of her brain will be completely separated. This in itself may cause some additional post physiotherapy issues between the two halves of her body and how she functions. There is risk of her losing her speech ability as well, which was our main reason for only severing 2/3 of the callosum during the first surgery. But now we feel that we have to try everything we can in order to help her get some relief and hopefully slow down any damage the seizures are causing. We've come this far, we have to keep going for her sake.
It is still the worst feeling in the world to have to make this decision to put my child in harms way in hopes of saving her in the future. Would all parents do this? No, I don't think so. Some would advocate further medications. Some would advocate the Ketogenic Diet, etc. etc. Stephanie isn't herself in this condition. She is so heavily medicated right now in preparation for her surgery that she can barely function without wanting to lay down and sleep. In preparation for this surgery, we again have to first determine if her intracrainial pressure is low enough for the surgeon to be comfortable opening her up. This means heavier doses of medication and a lumbar puncture the week before surgery to determine if she is indeed eligible...same procedure we followed this last year. The first time around in April, 2012 her pressure was too high and the surgery was cancelled. We pushed to try the medication trials again and sure enough her pressure was low enough to have the surgery in July.
Let's cross our fingers that Stephanie's body will cooperate and will be healthy enough for another brain surgery. She needs this. We need this.
