Here we are; 3-1/2 days before the orginal surgery date and almost 3 weeks past the actual surgery date; I start back to work tomorrow; and am being constantly reminded by Facebook and the news about how precious life is and the importance of spending time with and loving your child (RIP Kobe & Gianna Bryant).  This seems like an appropo time to post, what is most likely my last, update on this site.

Compton is doing GREAT!  Although we knew the potential side effects of this type of sugery (short term memory and vocabulary loss and possible decreased field of vision) the doctors were optomistic about Compton's case and in turn we were optimistic about the outcome.  That outlook has paid off - no sense worrying about the 'what-ifs' because  you cant do anything about them until your faced with them anyway.  We sort've took that approach to this whole diagnosis and treatment, although as I reflect on it this evening, I realize that this whole experience happened relatively quickly (for this dagnosis) and we really just put 'one foot in front of the other' each day because that's all we could do.

It has all paid off!  Compton has had NO seizures!  No 'deja-vu' seizures.  No awareness/absence seizures.  And although it's too soon to be completely sure, No tonic-clonic seizures.  On top of that, during the surgery, after the resection and before closing, the surgeons tested the seizure activity with electrodes on the brain and it was SIGNIFICANTLY reduced to the point of almost none.  The reason there was still a trace is because the remaining 'layers' closest to where the tumor was, do not forget how to have a seizure.  BUT the source, or 'kindling' is gone.  Compton will need to remain on his anti-seizure medicines for up to a year and will be slowly weened off them and hopefully eliminated altogether at some point in the future.  These medicines cause their own, less than desirable side effects (mostly sleepiness, but also memory challenges, changes in appetite and can effect mood) so we are anxious to be off the meds but understand it is a process.

Without getting into any gory details about the surgery, I will share that he went in promptly at 7:30 am.  I was called by one of the nurses several times during the surgery with updates; while anesthesia and prep started at 7:30, accessing the tumor didn't start until 9:00.  We got a call around 1:20 that the resection (removal) was complete and they were beginning closure, which was to take about and hour to an hour and a half.  Sometime around 3:00 we were notified that he was in Stage 1 recovery and around 3:30, the surgeon came up and talked to us.  They removed an area a little larger than a golf ball; the removed the main are of the tumor, did electrode testing, still saw seizure activity, removed a larger margin, did more electrode testing and saw little to no activity.  The 'scraped' the hippocampus but did not 'remove' it.  A biopsy was done on the tumor prior to closure to confirm that it was not cancerous.  (Although we had no reason  to believe that it was, that was still a HUGE sigh  of relief!).  I learned after the fact, from the nurse practitioner, at the follow up appointment, that they reattach the skull with titanium 'biscuits' (you wood workers know what I'm talking about!)  The surgeon was very pleased with the result of the surgery.  Around 4:00 we were notified that Compton was being moved to the PICU in Golisano Children's Hospital and by 4:45 we up in his room.  That was Tuesday - I stayed in the hospital with him until Friday when I came down with a very bad cold so Jim took over in the hopspital while I tried to recover at home.  Compton and Jim came home Sunday around 6 in the evening - about 5-1/2 days total - CRAZY!!!

Compton has a large scar on the left side of his head that looks like a short, squat question mark shape (?) starting where the top of his ear is attached to his head, goes up and inch or so, turns 90 degrees toward the back of his head for a couple/few inches and then curves back around in a roughly 3" arc and ends just before his hairlineabove his left eye.  They didn't count, but estimated 60 staples!  Compton had them out the next Thursday - 9 days after surgery and I have to say that he was a real trooper about it!  I should also share that the night before the surgery, our friend Sam, and her husband Kyle, who own a salon, shaved Compton's head, at his request, leaving a mullet in the back.  Unfortunately, the surgical team had to partially remove the mullet because the incision was bigger than we anticpated.  Now, on top of the gnarly scar, he has about 2/3 of an akward mullet - good thing he is wearing a hat all the time!!!  There is still some swelling on the side of his head and around the eye, but the bruising is mostly gone.  Everyday he looks and acts more alert and gets up, around and out a little more.

I have subscribed to a few different social media sites regarding cortical dysplasia, epilepsy and temporal lobe resection and am discovering how lucky we were to get the diagnosis and have surgery scheduled all within 10 months of the first major seizure presentation, 9 months of the epilepsy diagnosis and 6-1/2 months of the tumor discovery.  There are four doctors in a 100 mile radius that do Epilepsy Surgery/Tumor removal and only one in Rochester and he was Compton's surgeon since last July.  We met with him within a few weeks of the full diagnosis and knew right away that we wanted him to do the surgery.  I can't say enough good things about Dr. Webster Pilcher!  He has given us hope for a full return to a normal life for Compton.

At this point, Compton has been cleared to start back to learning with a tutor which we hope will start around the first week of February.  He can not fly for a few more weeks, no aerobic activity and no lifting more than 10 lbs. until he is cleared, and no contact sports for a year.  We have a follow-up appt. this Thursday with the neuroloist and a follow-up appt. on 2/10 with the surgeon's office.  We are hopeful that he will be back in school sometime in March, but he would prefer that he isn't allowed back until AT LEAST 4/1.  (typical 16 year old boy!)

We could never have anticipated experiencing anything like this and certainly hope none of you have to deal with epilepsy, Focal Cortica Dysplasia or Temporal Lobe Resection.  We feel we have come through this ordeal and are on the road to full recovery.  So with that, I dont anticipate doing anymore updates here, unless there is a significant change but we are optomistic and confident that his health will continue to improve over the next few months and that we will have our compassionate, considerate and caring yet insufferable and antagonistic son back to his normal self  in no time.  Thank you all for all your suport throughout this crazy journey - we couldn't have gotten through it without all of you!