Thursday was a big day!

Just a few hours into our morning, and we found ourselves getting closer to the answers we have been searching for.
Our first visit from a doctor this morning (Dr. Lee-Messer) revealed that after Alex went to bed Wednesday night (early Thursday morning because she was trying to become sleep deprived), her EEG showed some abnormal "epileptic" activity. This was the first evidence to the Stanford team that she was suffering from this issue, in addition to the non-epileptic seizures that the tests revealed yesterday. This helps to add more depth, and possible answers, to what Alex has been dealing with for years.
Then around 930am, Dr. Barry visited us and worked with Alex again on her non-epileptic seizures. Allison & I were able to witness as the doctor talked her through a seizure from beginning to end. Although Dr. Barry is very optimistic about Alex's ability to train herself to minimize or eliminate these types of seizures, she is quite nervous and apprehensive now that she knows they can come on so easily. She is also feeling very frustrated about having these non-epileptic seizures and now thinks that it must all be in her head. Dr. Barry assured her that these seizures are are more common than people think and that even though the goal is to exercise her brain and reteach it how to handle these episodes, it all happens in our subconscious and at a level that even the experts have little explanation on.
The day progressed, we spoke to the doctors more frequently and they agreed that they had all the info they needed and it was fine if we went home. Now all that had to be done was an IV dose of meds and a long shampoo job to get rid of the glue in her hair from the sensors, then we were on our way home!
Here's the net result (as well as we know it now):

• EEG's show abnormal activity, and when paired with the history and description of her earlier seizures, gives us the conclusion that she has had epileptic seizures (tonic clonic or grand mal).
• The hyperventilation & strobe tests along with hypnotherapy exercise revealed to us that her more recent seizures have most likely been of the non-epileptic type.
• Dr. Barry worked with Alex on ways that she may be able to minimize the effects of the non-epileptic seizures.
• They are slowly going to phase in a different anti-seizure med while tapering her off the old one. We will be watching this closely for side effects or other issues.

Overall, it was a great experience and with the help of this great medical team, we feel Alex has a really good chance of putting this behind her, sooner rather than later in life.

Thanks again to everyone for the love, support, prayers, kind words and well wishes. It never went unnoticed or unfelt.

With love,

KAAL

More tests, more seizures.........

Greetings from F324.
After our visit to assist Fred, we ventured to the cafeteria for lunch. As we grabbed our tray, we received a text from Alex saying that the doctor just got to her room and was ready to do the testing we had been waiting for. We hurried upstairs then waited patiently while she prepared Alex for what was going to happen.
First was the hyperventilation test, where Alex was asked to quickly breathe in & out for 3 minutes, in an effort to stress her system. She completed that test with no adverse reaction. Second was the strobe test, which turned out to be far less of a 70's disco/strobe-light scene than I thought. The doctor simply put a small strobe lamp in front of her face, asked her to close her eyes, then flashed it a dozen times in her face. As the doctor was asking Alex to open her eyes for another sequence of flashes, Alex started to convulse and it became clear that this test was providing the desired results for the doctors. As a team of doctors/nurses came charging in the room, our nurse took over and quickly gained control of things. She patiently talked with Alex as she continued to convulse for several minutes, and Alex remained slightly responsive during the whole episode.
She is doing much better now, but for good reason she remained very tired through the afternoon. They are going to try a sleep deprivation test tonight and then Dr. Barry will be back at 830am tomorrow for more work.

Thank you for all the love and support.

KAAL

Fred's advance directive

Earlier this afternoon, Allison & I left Alex's bedside, in search of a grilled cheese sandwich and fresh salad, downstairs at the cafeteria. As we approached our destination, we could hear the beautiful sounds of a "Celtic" ensemble playing some beautiful music in the courtyard below us. As we paused for a moment to listen and relax, we were approached by a doctor named Milton and he asked us if we would be willing to witness for a patient, as he signed his advance health care directive. We of course agreed to assist, and were escorted to the Blood & Bone Marrow Transplant unit, where we washed up before meeting the patient. Fred was a very nice man, above average build, looking reasonably healthy and having very little hair (probably more a medical issue than a genetic one). He greeted us warmly and shook our hands with warmth and sincerity. While signing the forms, we talked briefly and found out that Fred and his wife were from Salinas, but had recently moved to Palo Alto so they can stay within the "circle of care" (close proximity) to Stanford.
We did not ask many questions, nor was anything explained to us, we simply did what was asked of us and shared a quiet, personal experience with a man we had never met.

During life's special moments, we are gently reminded that there are no coincidences.

Everything happens for a reason..............

Wednesday morning

After an uneventful yesterday, Alex has had several visits from her doctors this morning. They explained that her EEG results have been normal so far, but that was to be expected considering her seizures are so sporadic. During the most recent visit by Dr. Lee-Massey, he told us that today they would try to induce seizures with strobe lights and hyperventilation techniques. More on that when those tests take place.
About 2 hours ago, we received our first visit from Dr. John Barry. He is a world-renowned expert in the study of psychiatry/seizures/epilepsy and how they relate. He met privately with Alex for about an hour and worked with her through some hypnotherapy techniques. He was able to to bring on some seizure episodes and will come back tomorrow morning for more tests (with us present).
We will have more to report throughout the day and the balance of the week, and will keep you posted along the way.

Love,

The Browns

Day ONE

Welcome to Stanford

Al & al in waiting room


Alex taking time out for a new hair-do in the room

Alex was thinking about taking up synchronized swimming with this new look

Let the fun begin!
We got off to an early start and arrived at Stanford around 830am. Allison got Alex checked in while I parked, then we got her up to her room.
Soon after getting settled in to the room, we were greeted by two great doctors, who will be caring for her most of the week (Dr. Fisher & Dr. Lee-Massee). They asked a lot of questions, made a few basic assessments of her history and told us that besides stopping her meds, there would not be much done today. During this time, Alex was fitted with 26 EEG sensors that were glued to her head, then they outfitted her with an awesome purple headdress (she is stylin!). The EEG is running round the clock, along with video and audio surveillance. This will allow them to go back and study any signs (neuro, video, audio) that may help hem determine the root of the problem.
We talked about some of the things they feel they might do over the next few days, in order to initiate an episode (seizure). This could be a vibrating tuning fork on her forehead, strobe lights, overheating, hyperventilating and more.
So far so good. I am heading out to the local deli to get her a turkey sandwich, since the hospital food is not what she is craving.

Thanks to all for the outpouring of love & support.

KAAL

Heading back to Stanford......

Luke with friends on his 17th birthday!

Luke with RHS B-ball team after a great win in February.

Luke & Brooke before the Sadie Hawkins dance.

As the family scurries around making last minute preparations for another trip to Stanford, I thought we at least owed everyone a post-December update on Luke.
He is doing FANTASTIC! His lungs are working great, he has put on most of the weight he lost while at Stanford and his social life has been as busy as ever.
As the Director of Basketball Operations for the Ripon High School Boys Varsity Basketball team, he helped lead them to the Sac-Joaquin Section Division-IV quarterfinal playoffs. Additionally, just last week he was the "McManager" of the Ripon High McBallers Dodge Ball team and he helped lead his team to a finals victory! He had a fun birthday party in February and also just attended the Sadie Hawkins dance last week with Brooke Bigelow (they both supported the "Super Hero" theme in their Batman shirts).
You'll never hear the Brown family say that last December was easy, but we will tell you that we were blessed. The blessings were not only seen in the speed and simplicity of Luke's recovery, but in the love and support that we received, and continue to receive from family and friends.

Thank you all.

Love,

KAAL

Home at last..........

We are finally home!
Luke was released from the hospital Wednesday afternoon and he made it home after being in the hospital for 3 weeks.

He has some stitches to get out next week and a surgical follow up in 2 weeks, but otherwise he is doing pretty good.

Thank you for all the prayers....we felt everyone's love and support more than you know. We could not have done it alone.

KAAL