Reading through the posts I am filled with such sadness . . . because in each post I had such hope - hope for a cure. Unfortunately, we have yet to find our cure for Brian. He started having seizures again 18 days after the surgery. We were devastated to say the least. We are all taking it in stride now, trying so hard to find the silver lining.
Brian has had a really rough course. He even ended up re-hospitalized at UCLA for a week.
The medication he was on - Dilantin, made him deathly ill. He lost almost 20% of his weight due to vomiting. Was just sooo sick. So finally his neurologist took him off it. And when it cleared his system, what a miracle!! Our Brian was BACK!!! Laughing, joking, smiling. Running, good balance, playing basketball, swimming (with a vest and me w/him of course), handball, etc etc .... What a great week....
And then the seizures started up again so his doctor added another medication (Depakote). First dose knocked him out! Couldn't walk straight, had nystagmus (eyes moving back & forth rapidly), and vomiting profusely. Most likely because it combines with the other medications he is taking to create a level that is too high.
At any rate, he is miserable again . . .
So, it is sad to look back at the posts when we had hope....
I pray that he can find a happy ending. My boy just wants to go to school and experience life like any other 12 year old ... Please dear God, please help him.

Brian is home now, and we are so happy to be home. But our journey is far from over. We are so thankful that today is the 15th day in a row he has not had a seizure. And yet the reward does not come without a cost. He has significant expressive and receptive aphasia. Meaning he has difficulty finding words (like trash, girl, shirt, etc), and difficulty with meaning at times.  (didn't know what a blueberry was or a sweatshirt, but does when he sees it).  When I see him struggling to tell me a story, using gestures, etc. I feel full of fear and sadness. What will his future hold? Will he improve when the swelling in his brain subsides? Will he get better with therapy? I pray he will. I want him to be independent and happy in his life. He had so much before the seizures took ahold of him. Please God, let him have it back.
He is also exhibiting the typical low frustration tolerance, easy to anger that I used to see in patients with a traumatic brain injury. So weird that now it is my boy. Good that I know about this stage, I pray it is only a stage, one he will move through. I pray for the strength and the wisdom to deal with it.
And Brian is still not feeling well. Still vomiting daily, and still gets the chills to the point of teeth chattering when he takes a blanket off him.  He needs help walking, which will improve I know for sure. So it is slow going, and I am so scared. I had an 11 year old who was strong and healthy and got straight A's. And now I have a 12 year old who just had major brain surgery and has significant deficits. . .
So I will dedicate my life to helping Brian get better and all my boys adjust to our new phase in life. Maybe I was guided into the path of pediatric occupational therapy at childrens hospital because God knew this was in my future. . . .

Uncle Brian shaved his head in solidarity!! Made it MUCH easier for Brian to accept his new hairdo . . . . God Bless you Uncle Brian!!!  

Well, today is Day 8 in the PICU, and we hope to move to the floor. We are praying for a private room for many reasons.  It is getting more difficult to stay in the hospital. Brian continues to have pain, and difficulty with language and hearing. And some other issues as well that are scary for us. And the less sleep we get, the harder it is to deal with all the different personalities and opinions of the medical staff . . . I have worked in hospitals for over 16 years, and have rounded with NICU teams, so I know the "drill", but it is so enlightening, always so enlightening to be on the other side. To be the parent is never easy. While I knew this surgery would be HUGE, and the recovery long, I don't think I knew how big or how long. . . But as difficult as it gets. . . Today is day 8 . . . and THANK YOU GOD, so far no seizures!!!!   Please God, let the seizures be cured. Because even if we have to go through hell and back, if we can take away his seizures and give him back most of his life, that will be something. Of course I want to give him everything he had before. But if that isn't possible, if we can give him a life without seizures, well at least THAT is something quite remarkable. At least that is a miracle . . .

Day 6:

Brian got his ventriculostomy: AKA drain coming from his brain - out today!!! A step in the right direction! He seemed better today. He still can't sit up without feeling sick, but he was more awake today, and able to talk better. He also had 1/2 of a 22 oz Jamba Juice (while in sidelying w/HOB slightly raised). And he kept it down, so that was great.
Being in an ICU is very difficult, and it is great that both Michael and I are able to be here to advocate for Brian. Overall today was an encouraging day, a step in the right direction. But progress is very slow, and I think the rehab process will be much slower than I expected . . .

Today is day 5 in the PICU at UCLA for Brian. Yesterday he ate some food and sat up a little, even played some cards. But he is having some difficulties with language now. His surgeon thinks it is the connection between the expressive and receptive language areas in his brain. So since yesterday he will ask for water if he wants a paper towel, he called a cup food, etc. He is also having a lot of trouble hearing what we say, and this also could be due to swelling. Dr. Mathern said the language difficulty could be due to swelling in that area, and that it could take weeks with rehab to resolve, but it is hopeful that it is just this and will resolve.
Brian is also having a good deal of pain, and he hasn't been able to tolerate the food he eats (gets sick). Today he had pain, and is mostly sleeping. We are letting him rest, hoping sleep will heal! We continue to pray that Brian will have complete healing, and we are thankful he hasn't had any seizures yet.

Brian had his surgery yesterday. He was in the OR for over 10 hours, and the surgeon removed his entire left temporal lobe. There was concern that his language would be affected, but he woke up saying "I want to go home", and following simple commands (wiggling his thumb and identifying me) demonstrating receptive speech. We are all so very grateful!! Dr. Mathern came in today and showed us pictures of Brian's brain before and after the surgery, and it was truly amazing!!  I am amazed that he has hands skilled enough to resect out the entire lesion and yet not damage the language center.  Now we are in for the long haul . . . the recovery phase. Today
Brian is lethargic and in pain, but that is to be expected.  We will wait and see, and hope and pray that the surgery was successful and he does not have any more seizures.

Brian right before he went in for brain surgery this morning. It has been a very emotional day. I have never been so scared in my life. But they just called and said he is stable and they are about to close, so I assume all is well. I pray for a successful outcome. Please let him be among the 80% that are seizure free after surgery!! Please give him back his life!!!

This is my beautiful boy Brian.  He is now 12 years old, and this picture was taken just 16 months ago when our world was carefree. When seizures came but once a year . . . if that, and were not so disruptive when they came. But now, this Thursday January 10, 2013 he will be having a brain surgery to treat medically intractable seizures that have taken over his and our lives.  His neurosurgeon, world renowned Dr. Gary Mathern, has told us the amount of tissue he will be removing is extensive. And he kept stressing extensive. Brian will have a complete temporal lobectomy, sparing only the language areas. Usually they take the anterior 2/3, but the "bad" areas of Brian's brain extends through the entire temporal lobe, all the way back to the occipital lobe. And success is greatest when all the "bad" areas are removed. It seems Brian has Cortical Dysplasia, and his chances for seizure freedom after this surgery are 80%. But allowing your precious child to have a large section of his brain removed - terrifying.
And yet we have no alternative. This past year he has had an average of 55 seizures per month, the most seizures in 24 hours being 19 landing him in the PICU at UCLA.  He has gone from a straight A highly intelligent, very fast and funny young man to a very sick child with slow processing, impaired memory, decline in cognitive status, and word finding issues.  He has not been able to go to school since the end of March 2012, and the district has provided 5 hours/week in home teacher. Brian says he can't wait for the surgery so he can "Stop his seizures and get back to school with his friends".
2012 was the worst year for our family. I hope and pray that 2013 will bring health and healing for Brian. Three days before surgery his stomach is so upset he hasn't eaten all day, is retching, and is miserable. This is common for my Brian. Due to ictal vomiting, or the the medications? All I know is I want his strong, healthy and well hydrated before surgery - please dear God!!
So I am on my knees and sleep deprived as I try to help my child get better and place my child in the hands of a doctor who will literally hold his life and future in his hands. . .