Merry Christmas

It is a great Christmas. We have so MUCH to be thankful for.

To recap the year:
David had two brain surgeries this summer. (Thank God for brain surgeons, neurologists, HMOs, and paying jobs!) (Dates: late May and end of July.)

The second surgery didn't go well. (Thank God that the surgeon was on top of things.) (8/1)

David had what amounts to a small stroke but he recovered quickly and fully.

Even though he couldn't get the part of the surgery that would have healed his epilepsy, he may be healed anyway!!!

His VNS implant (an epilepsy therapy, like a pacemaker) was not turned on properly after being turned off for surgery so he went 7 weeks on almost no dosing before we discovered the problem. Thank God for that--that is how we know he really may be healed! (9/19)

God faithfully, relentlessly, unremittingly brings good out of evil. Having my boy be unresponsive in the ICU for a day or two was (and is) heartbreaking. But the path since has been full of blessings, little and big. We are learning to look for them and to love them.

Sick again and still no seizures

David has a cold again, his second since August. He is having no seizures. I don't know if this sounds redundant with what I always post. But usually when he has a cold it's a major battle to keep his temperature down as even a slight elevation triggered lots of seizures. It's like we woke up from a bad dream--but I'm not quite awake yet, I don't get it. But it is so very, very good to have this wonderful break after that dreadful episode.

This always happens

We had a nice appointment with Dr. Maleeva Friday. I shoulda known though--she didn't bring up tapering off his medicine, so I did at the end. "Oh no, not till he's been seizure free for two or three years! Give it three years." I had thought six months would be enough. I should learn that waiting is always the way.

So I guess I will stop counting the days and count months now.

At least we know that we should get on with life, as it is now. Tapering off medicines is a bit stressful and I had wondered if David should be at home and not go away to college till it's all done.

Doctor today

We see Dr Maleeva (neurologist) this morning. It will be interesting to see what she recommends. David has gone now for 112 days w/o seizures. However, he has a pretty major aura about once a week. Last week he had two in one day. He checked his temperature and it was high so that old pattern may be still in place. He says his auras are bad enough that if he didn't know he was not going to have a seizure, he would expect one to start.

David and Bijan and I went to an epilepsy conference last Saturday. We got to see a couple families from the epilepsy support group that have been rooting for us. Dr Sutherling also shook our hands and had encouraging words for us, and is very happy that David is doing so well. It was all encouraging and good.

More later.

Into the triple digits

103 days, no seizures!

Next Friday we see Dr. Maleeva. David is eager to start getting off medicine but she may have a different opinion.

David is brightening up more and more, beyond what he was before. Yesterday he suddenly got interested in applying for a couple epilepsy-related scholarships, which are contingent on being admitted to college, so he's starting on those applications too. It's a bit stunning but it's good!

Halfway and more

Today is David's 95th day with no seizures. He is pretty much back to normal, finally. It took as long as Dr Ross said, 3 months. He still drags his right foot ever so slightly but he says he doesn't feel anything odd, and that his dexterity in his right hand is fine. His eye gets slightly droopy when he is tired.

It's a great thing to get this far past such a bad event. I remembered a hymn with a great verse:
Ye fearful saints, fresh courage take
The clouds you so much dread
Are big with mercy and shall break
In blessings on your head.
(William Cowper)

Good things have happened in our lives since August 1. We have a lot to be thankful for, though we still feel a bit scarred.

Almost to 3 months

Six months may be when we can consider him healed, and start dropping the meds he is on to see if he is completely healed! October 31 is three months. May God grant us a very happy Halloween!!

Still, still, still

It's so repetitive but so good. Still no seizures as the 82nd day ends.
Pray for us--the awe of getting our boy back fades sometimes as he occasionally does irritating things like he used to.

75th

Today is the 75th day with no seizures. AND last week David had a bad cold which usually brings flurries of seizures. Nothing!

Still counting

Day 66 is now ending. I hope it isn't boring to keep posting the count, because it is more and more exciting to us.

We are starting to wonder what is next. If David's surgery had been successful I recall hearing that we would wait six months then start to wean him off his meds. Somebody pinch me! I can't believe this is happening.

David is a lot better. He seems back to normal as far as his brightness and energy go. He is managing his classwork well. This is about what Dr Ross had predicted considering how fast young guys recover. It seems like we have gotten through the August 1 trauma with a full recovery. Bijan and I feel it still. But we are thankful that things are so good.

Day Sixty

....with no seizures. Aaaaaaallleluia!

I took David to the ophthalmologist This morning. Vision in his left eye was affected a lot after the August 1 incident. It is almost back to normal. His visual field is a bit less in one area but it's not too much below normal. Hopefully it will keep getting better on its own. Just in the last two weeks it got a lot better so that David can wear his glasses now.

Other than that he is doing great. He is still more subdued than before surgery but his strength is coming back and he has gained back the fifteen pounds he lost. Since the VNS makes a person feel full, and its dose is reduced so much now, he might bulk up a lot more, since he had lost 20 or 30 pounds after having it put in a couple years ago.

And now for something completely different

Crazy!! Dr Maleeva checked the settings on David's vagal nerve stimulator implant and found that after his surgery it hadn't been set right so instead of giving him a dose every three minutes it was dosing him every three HOURS. Basically doing nothing. And he hasn't had seizures! Last time something went wrong with that thing David had a BAD problem, SO... Dr M was very happy and suggested that maybe in the surgery something HAPPENED that was good. Just what we had been thinking! So for now we do nothing. Except her new prescription was: every night say: "Thank you, God." OK! We will! We will!

Since David can't even have any surgery for at least several months they didn't bring him up in their conference, which makes sense.

Today is fifty days since his last seizure. I think that sets a record for him.

The guest book is going away on Monday so please sign if you haven't and I will save a copy for David to keep.

Sign the book soon

I am going to cancel the subscription to the guest book in a week so if you are thinking of signing please do it soon. (We could have it for free but when I first set it up that way it had a large ridiculous ad saying it recommended a dating service for those who had signed.)
Thanks. The encouragement is awesome.

We see our neurologist, Dr Maleeva, on Friday at 12:30 to get caught up. We haven't seen her since August 5 when David left the hospital. If they don't peek at the blog first it will be fun to surprise her with the news that David has had no seizures.

Still seizure free

Still NO SEIZURES! It's been 44 days now--almost a record since David started having epilepsy at age 11.

He is struggling some with schoolwork. He gets tired and his class is hard and requires summarizing some hard concepts written several hundred years ago. We're not sure it will work out. Maybe he should take time off.

His eye looks really good now. It doesn't work quite right still as it has a very narrow field of vision. He goes to an ophthalmologist in a couple of weeks.

Everything is so good without seizures!!

Looking good

David seems almost back to normal now. He tackled some homework a few days ago and is getting into it. His eye is mostly back to its right place and his eyelid isn't very droopy and what there is doesn't look very unusual any more. Five weeks ago was a happy day when we realized that David would recover, and Dr Minazad got it exactly right when she said his optic nerve palsy could take six weeks to heal. He has made a great recovery. We are thankful and we thank y'all for your prayers and encouragement!

P.S. Still no seizures!
P.P.S. Sign the guest book below if you can.

Never a dull moment

On Sunday I learned that David had not been taking one of his medicines, Klonopin, for 11 days! I had let him resume filling his medicine dispenser. Whoops! Dr Maleeva said he could just stay off it and see how it goes.

Still NO SEIZURES!!!! 35 days now since the last ones, which were in the hospital. Yahoooo!

David keeps making good progress. His voice and speech are getting stronger, almost normal. His strength is increasing. Physical therapy tires him out but maybe there is an interest factor there. Overall he is just looking nearly back to normal. We passed the one month anniversary of the Bad Day (Aug 1) with a lot to be thankful for.

Next Thursday he starts class at Torrey Academy with Foundations of American Thought. The speech therapist thinks it is just what he needs to get his brain "moving", as he puts it. He thinks the work should be piled on David. If 100 pages a week of Locke, Hobbes, Voltaire, Jonathan Edwards and John Wesley don't do it, we can throw in some calculus and physics I guess. I feel woozy.

Progress

Yesterday David had speech therapy and physical therapy. The speech therapist is quite a crackup--he's a "Dr" and a big man with a big voice and big laugh. Anyway, he pointed out that David is a lot more fluent than a week ago. His sentences had been coming out with a lot of pauses and that is much better now.

The physical therapist is a nice woman. She noticed that David is steadier on his feet than last week.

David needs to read and make notes on one of those good books that is not so fun to read: Locke's Second Treatise on Government. I found it on audio which he says is helpful. He's listened to a lot of it but is procrastinating making notes so it will be interesting to see how that goes. His first class where this is due is not till two weeks from tomorrow so he has time.

Photos

David and Aunt Farideh and cousins Kimia and Kiana.


These were taken two weeks ago. David doesn't wear the eye patch any more. His left eye is almost totally straightened out and he is seeing only one image. Yeah!! His left eyelid is still a bit droopy but better than in this photo.


He is much more normal. For a couple weeks after the "incident" he was content to just sit doing nothing. Now he is playing board games and using his computer and staying involved for most of the time. Yesterday after church he went to the singles lunch then played football in the heat, and felt fine. Today I asked him to take over counter-cleaning which is apparently a chore he does not like--next opportunity, he was doing his old chore of unloading the dishwasher. Tomorrow he is starting speech therapy. The plan is to have two sessions a week for three weeks.


Everything looks better to me this week. Thank you for the prayers.

Please keep praying for NO SEIZURES! He has had zero since being in the hospital. Yesterday for the first time he felt a slight aura. Wouldn't it be nice if....?

Boogie boy

Friday we went to San Diego and hit the beach in the late afternoon. David went full steam out to the surf and boogie boarded for nearly an hour with a HUGE smile on his face.

At one point I recalled that three days before we were pushing him in a wheelchair around the zoo and wondered if we were not being careful enough. Well, the zoo is not quite as interesting and I usually feel like I'd like a wheelchair when I am there, so maybe it was a mental attitude difference for David.

We hit the beach again for another hour on Saturday and David did it again. Sunday he looked a bit tired and took a nap and had a small headache, but otherwise, he got away with it!

David's eye is getting better and better though it is still not quite straight. He has been seeing a double image and the second one is at an angle. Today he said the angle is less than it was.

Apparently David's case didn't get discussed last Wednesday so I just requested that it will come up in the neurology doctors' conference on Wednesday Sept 10, and we have a doctor appointment on the Friday after to learn what they recommend next.

Please pray for me to keep trusting in God. I finally have time to process it all and have been discouraged at times. This morning I was encouraged by Isaiah: "When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you. When you walk through the fire, you shall not be burned, nor shall the flame scorch you."

Please also pray with us for healing for David, however it happens. We need wisdom.

Pray for wisdom today

Yesterday David lasted for 2 hours at the zoo and 2 more hours at Costco. Both places supply wheelchairs. He looks better and better.

He starts physical therapy next week and will have it twice a week.

I am not sure how he will do with schoolwork as he will have homework start in 1 week. Reading seems hard for him at this point. Writing may also be on hold for a bit longer. Dr Ross does expect him to make a complete recovery in about 2 months, maybe even less since he is young.

"Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge him and he shall direct your paths." I am very thankful for those words as they clear away stress and confusion.

This afternoon is the neurology doctors' conference where they go over the current cases. Please pray for God's blessing and wisdom if they are able to discuss David. We go to our follow-up appointment August 26 so we may not hear till then.

Fun at the surgeon's

Dann and Colleen Shubin came to the waiting room at Dr Ross' today for Dann's shunt checkup so we had a good time all together.

Dr Ross was very happy with how David is recovering. He wants David to wait 3-6 months before any more surgery. He also does not want to put in a grid ever again, but said there are other options, depending on what the medical doctors think should happen next. Another interesting detail he mentioned is that the seizures the grid picked up did not match very well with the info they got from the probes in the previous hospital stay in May.

We have had a delightful visit with Bijan's relatives. Rachel went with them to Bijan's brother's in San Diego and we will try to go down on the weekend for more visiting and to get her back. I need to post some photos.

Onward

Tomorrow (Monday) at 1:30 we see Dr Ross to get David's stitches out and hopefully get a bit of insight into what may be next. As the surgeon he will have an opinion on when David will be recovered enough to consider another surgery. He also may be able to assess how David's recovery is going.

In a couple weeks we go to the neurologist who by then may have assessed what this visit gave us as far as seeing where the seizures come from, and what they recommend for the next step.

David is doing quite well. He is getting stronger at walking well every day. He used the walker from Thursday noon till Friday noon and that's it! His eye is still a little askew and he has double vision where the second image is not only separate but also rotated a little. He is not very active and sits still a lot which is strange for him.

Yesterday we went to the Griffith Observatory and David was able to endure for over two hours. Part of the time he was willing to sit in a wheelchair. We went out for a late pizza dinner after that. I thought he would be wiped out but he was up in plenty of time this morning and wanted to go to church.

Footnote to Friday's post: The temperature feels downright cool outside! It's been only 85 or so.

We have had a lot of fun with Bijan's relatives here. They are all sympathy for David and give him lots of TLC. Rachel is getting a huge amount of attention from her two 18- and 20-year old girl cousins. They are taking her with them to San Diego for the week to visit Bijan's brother and his family. She is getting treated like a princess.

Count it all joy

God is giving us more joy. (I'm serious.) Our air conditioner is down for the weekend. "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance."

After napping all morning David looks even better. His eye is a little straighter.

Walking well

David is definitely walking better and may not need help any more except for using the walker. He is resting a lot and is comfortable and content.

Slower progress

After a few days of getting better rapidly, David has leveled out a bit. He seems to be walking better but needs somebody with him still. He is wobbly but doesn't know it. Today he napped all morning and watched videos in the afternoon. It's about all he has strength for at this point.

This is a challenge for the rest of us to be patient and helpful more than we might feel like. We want to rise to the occasion. Plus it is a joy to have David home and to see his sweet, patient face. He is not demanding and is doing pretty well at waiting for people to help him. Plus God has sent us a Sean angel (on the wings of a Boxster!!) to help us at home today. Tomorrow Grandpa comes to visit.

He's Home!

David came home yesterday in the late afternoon!
His appetite is pretty good and he is doing well here at home once again.
But although he is fine and is not getting worse, he is recovering more slowly now.

So please keep David in your prayers - that he may recover very soon and that we as a family can help David.

Tuesday

David's eye looked more in line today and he seemed to see better but it hurt all day so he had a little pain medication, and an ice pack on it.
His speech is affected so he got evaluated for speech therapy.
His walking is affected so he will go home with a walker and may get physical therapy.
(Don't get a brain injury!)
He also looks a bit depressed though he doesn't think he is. He is on a really high dose of his usual med Keppra and is also taking Vicodin for pain and Decadron which is a steroid to reduce the fluid buildup in his head. So considering all the stuff he's on and what he went through, I shouldn't worry.
This is our prayer list. Thank you so much for supporting us. We'd love it if you'd sign the guest book if you haven't yet.

Wrapping up

Dr Ross this morning told the nurses that David can go home Tuesday. I'm not sure if he will be quite ready, but he must be getting close.

David walked to the bathroom today. He wavered around so he needed to be accompanied. But at this point he is almost completely free of tubes, wires, lines, etc. He is really weak from the whole experience. Making the trip to the bathroom tired him out.

He is not in much pain any more. Today he didn't need any pain med till dinner time. And dinner for him was a cheeseburger so he's doing well with food.

He is still seeing double with his eyes being out of whack. But they looked better to me today. It's a good source of jokes--"you get twice as many visitors"; "better wear your eye patch so you know which bathroom door to go through"; "you get to watch two videos at a time". He loves laughing.

Thanks to all who signed the guest book below. I need to read them to David when he has a bit more stamina. He will be blessed so much. He is blessed.

Sunday post from David

In this photo David is writing the message that appears two posts below this one. He needed some suggestions with ideas but had his own words. He spelled 'thanks' as 'thanges' at first, then looked at me frowning and pointing at it so I told him to use a 'k' instead of a 'g'.

Sunday night status of David

Last night David got moved back to a regular room. (It's the same one he had in May and June.)
He was talking a little. His throat is hoarse but also his brain seemed a bit slow too. He ate a big regular dinner of fish and rice. I wasn't there and was shocked because it was 3 pm when he was given permission to swallow anything at all and the surgeon recommended jello and pudding, not even liquids, because he might be uncoordinated and let them slip down the wrong pipe.
He looks weak and fatigued but he laughs at jokes a lot and seems comfortable and patient. He still needs to be able to walk but was not yet interested.
I'm off soon to go see him and will post more later. Also I need to post about the bits and pieces of how this turned out as a diagnostic.

Thanks for your for prayers

Hi,
I am awage again!
Thanks for your praying!
David

------------
postscript from Dad:

The above is David's first posting, made from the CCU, after being awake again and recovering. It has a few typo's but it's precious.

Patient David

David spent most of the afternoon off the sedative, alert, and wanting the breathing tube out. His hands were restrained which was not his favorite but I asked him to be patient and he was.

They took out the breathing tube around 5:30, after several tries earlier where he didn't breathe well enough on his own. Please pray for him to do well on his own in his sleep.

He was able to speak, sort of. The last few days his brain was not letting him speak but I think now it is his throat mainly, as well as needing to recover from all the drugs and the brain pressure.

He did really well at being patient and I am very proud of him. He had to let me suction his mouth, he could answer me with nods of his head only, and he had to put up with all the restraints and discomfort. When he was a baby and could start feeding himself he would take food I fed him out and put it in again, himself. So I think today was challenging as he hasn't changed much in spirit.

We also need to pray he doesn't get pneumonia. He has gotten pretty messed up with losing his ability to swallow yesterday and with fluid drainage from the first surgery, so he got fluid in his lungs. They are checking him carefully but apparently pneumonia can hit fast.

His low level seizure activity seems to have gone away. When they took the grid out we could no longer see the problematic pattern on the EEG. They put on external electrodes which showed nothing; of course those are of course not as sensitive, but the neurologists think he is ok. And he seems like he is not having seizure distress, just weak and needing to heal up.

This is a good day--did I say that before? It was so good to see David improved so much this morning, and also a great moment when Dr Ross said to stop worrying! Thanks for being with us.

P.S. Sorry to be slow in updating. I held David's hand and read to him all afternoon till I was finally exhausted, then came home and ate with the kids and watched a movie.

Happy doctor

Dr Ross (surgeon) is happy and said I can stop worrying. (Yesterday he said I should worry.) He wants the breathing tube to come out now.

Relatively minor complications: they are starting antibiotics and are a bit concerned about his lungs and pneumonia; his gastric fluids look like he might have an ulcer.

Life is good. God is good.

Good news, he is unhappy

David pulled on his breathing tube, tore off some tape covering his arterial insert, and was combative---all great news!! It means he is recovering quickly and feeling pain and discomfort. They had stopped sedating him for a few hours but had to restart when he did this stuff.

Better

It's 5 am and David has gotten a lot better through the night. He was very unresponsive on his right side (from the grid being on the left brain) and just slightly responsive on the left side. Now he has been able to look at me and nod when I ask him questions. He is tired and not in pain. He could feel the breathing tube that is down his throat so I explained that. His hands are restrained so I had to explain that too. I read him some bible verses and he liked that.

His nurse thinks he will recover slowly and be in the ICU for 3 or 4 more days. Thank God he is gradually but definitely getting better.

Diagnosis update: Dr Maleeva said that they still couldn't quite distinguish frontal vs temporal lobe from the seizure data the grid picked up, BUT she thinks she could have if she could have done the brain stimulation. (That is sending impulses through the wires to the brain to see what happens. He needed to be alert for that and never was.) She said this is not the end and we can keep on if we want to, to try for David to be cured.

We love the guestbook entries. Please sign if you haven't yet. I will read them to David.

Early morning cat scan

Really early tomorrow David will get a cat scan to see if the swelling has gone down. If it has they will try to wake him up and see how normal he is.
Dr Maleeva (neurologist) thinks he is not having any ongoing seizure activity so that is very positive.
This is the end of the fourth day.
God bless you, David.

Sedation

The plan is to keep David sedated for two days so he can recover. They will be able to wake him regularly to check him so I will post updates.

Out of Surgery

David is now out of surgery and back in the critical care room. Nurses told Beth that he 'looks good.' We are thankful that he went through the surgery well. Will keep you posted after we get to see him.

Emergency Surgery

David's condition took a turn for the worse this morning as he began to become very congested. The neurosurgeon just a few minutes ago told Beth that he is worried and is going to operate on David right away to remove the grid. They are putting a breathing tube in him as of this moment. Given his condition the past day or so, it is not for granted that this will necessarily restore him perfectly, so please pray that he recovers. He was very brave about this and did all that could be done, but it appears we have reached a stopping point for now. The Lord knows what he is doing. It is for us to trust and be patient. Thank you for staying with us through this.

Better but still not great

This morning David is much better. He now can open his eyes, respond to questions, and move his arms and legs. He still can't speak, but when he was asked to he thought about it and groaned as a way of saying 'no'.

Last night he was given some medicine to reduce the pressure which sounds like a kind of diuretic. We don't yet know what to expect with his condition for today. They do plan to move him back to the regular room. He had great care in the ICU with a nurse all to himself. Bijan said Nurse Sue was fantastic, very focused.

Thank God, David had no seizure. Dr Ross was concerned he would have a really bad generalized one which could spread the epilepsy in the brain as well as making the pressure and swelling worse.

His issue over the last 24 hours has been swelling which is blamed on having the grid inside his head. His brain seems to be reacting by producing a lot of fluid, which starts shutting it down as far as being alert and responsive and being able to speak and move. He doesn't have a problem with bleeding which would be very bad.

Please pray with us for wisdom today and for David to be safe. Dr Maleeva was going to do the stimulation testing today to see if the bad spot can be safely removed, but David needs to be responsive and able to speak for some parts of that. So it may be on hold for a while. Anyway it is not very important right now compared to what else is going on.

Pray

David is having continuous low-level seizure activity in his brain and is sleeping and not very responsive. This has been going on all day. Please pray for this to stop.

Cautious, but....!

I should not think about this much less post, but Dr Sutherling said something about surgery Tuesday. Everything else was very guarded and explaining that they have a lot to study so it is very premature to say if these seizures will be enough. At this point I am really happy to have even shortlived, false hopes. The stress of getting to this point has been huge. But why is it about me? It ain't! Somebody remind me!!

Doing better

David has slept well all afternoon. His distress this morning may have been because they think he was having low-grade seizure activity for a long time.

Apparently his doctors are looking over the recordings to see what they show. If they get a definite location for his bad spot then he will need to be tested to make sure that taking it out doesn't do some damage. Dr Maleeva will give him little zaps up the wires to see what happens. Pray that if they are ready to do this soon, that he will be alert. He is really out of it still.

Peaceful sleep and seizures!

After a bad night and really bad morning David has now been sleeping 3 wonderful hours.

He had several little seizures this morning--just his mouth twitching noticeably. Nurse Liz was Very Happy and said they are good seizures! They are leaving it for the Doctor to tell us, but it sounds like the grid picked them up and they are on the left side. I hope, hope hope they are good!

A Trying Time

David is going through a phase we had heard about, but it's something else when you actually go through it. He is in a lot of pain. The doctors don't think more pain medication is wise because they need to know if his brain is safe, which they check by periodically looking at his neurological indicators. If he is too sedated he can't respond enough for them to know how he is doing. They ask him to move his feet, grip with each hand, and answer simple questions. So far his 'neuros' are good, which is the most important thing. Please pray that they remain good, and for God to give him strength for this phase. Thanks for walking this road with us.
The LORD gives strength to his people; the LORD blesses his people with peace. (Ps. 29:11)

More normal

David is more normal now for what people usually go through--yukkk. His head hurts in spite of Vicodin and morphine. He can't sleep. We are hoping Dr Sutherling approves his getting his usual sleeping medicine tonight and that it would help David REST.

The wonderful nurse on shift tonight said the first 72 hours are the worst then it gets better. And David is nowhere near wanting or needing to quit--hallelujah!!

Thanks for praying for the dear boy.

Swell guy

It's funny--David is feeling a bit worse now than earlier. He got some morphine a short time ago because the pain got worse, and his head/face is swelling a little. He's still looking great though. Still not hooked up to the EEG yet so it feels like a race since he keeps having auras meaning a seizure may be coming soon. I hope we win. We were just imagining--one seizure today, two tomorrow, surgery Friday and home Saturday. After preparing for the worst, it's a nice change. No, Bij, I won't get disappointed when it doesn't happen.

Great Morning!

David feels great today!!! I came at 9:30 to the CCU room and he had a big smile on his face and a huge pile of food on his breakfast tray. It was stunning. Last time around he felt like ... awful... and didn't eat much for a couple days.

He just started experiencing some numbness in his fingers but it seems to be over. Maybe it was a tiny seizure.

Speaking of which, praise God he has had no seizures yet!! He is having auras so he may be ready but hopefully they can hook him up to the EEG first so when it comes it will count. He is in his regular room now so whenever it is his turn the techs will connect him.

Someone else to pray for here: the waiting room near here is decorated for a wedding later today. Apparently there is a lady who won't be going home and wants to get married before she dies.

Photos of this morning

Top: 4:30 am, time to go. Bottom: Dots on David's head as reference points for the MRI.

Resting up at the CCU

David is resting peacefully at the critical care unit (CCU). They gave him some anti-inflamatory medications just now to help prevent problems. He responds when they try to wake him up and can move his feet to show he is doing OK. Thanks for keeping him in your prayers.

He is out and did well but pray

David is through surgery, did well and is in the ICU.
There was a little earthquake but Dr Ross came out shortly after and said David was done already.
Dr Ross said because he is young his brain is large and fills his head so fitting the grid in too is very stressful. It actually may make him so sick that they have to take it out and send him home. However, this is normal for all young patients so hopefully he will get through it. But please pray for him to make it through, especially tonight and tomorrow.

Go!

David is in surgery now. Things were a little slow getting started with the MRI he needed before surgery but nothing major. I will post when there is news. Also photos. I took several at 4:30 am as David, Bijan and Sam (!) were leaving. Sam thought it would be exciting to go and he's an early riser. Hopefully he's a good napper too.

Bijan hasn't said yet if anyone noticed my artwork on David's head. We just had to do something creative--and there was a lovely dark head of hair to be buzzed off, and clippers that worked pretty well for shaving messages on it. We thought of "do not open till July 29" but it was too long. "Open here" seemed risky in case it confused someone in the OR. "Remove before flight" just barely fit and is a tag seen often on planes and is primo for jokes. Anyway, Bijan won't take David up till his epilepsy is under control, and David certainly couldn't pilot a plane till he's healed and off meds. So the bad bit of brain needs to be removed before flight.

Stress generates weird humor around here.

Ready, Set...

David is feeling fit and healthy and is ready for surgery tomorrow morning!

Could we ask y'all to sign your names in the guestbook at the bottom of the blog, so David knows who is checking in and praying and rooting for him?

His VNS implant is an issue to pray about. It doses him with electrical pulses that go up the vagus nerve in his neck and help his brain not to have seizures. He is dependent on it as we found out a couple times when something went wrong with it.

He has to have it off for the MRI they do before his surgery. So the plan is to turn it off at 4:30 this afternoon and turn it back on after the surgery, mid-day tomorrow. I feel that is a long time and he will be at risk of a seizure. In fact last surgery in May it was off for about that long and he had a bad seizure the next morning while in ICU. It was before the EEG was connected so it didn't count for anything. So please pray for him in this area.

David recently realized there is a positive side of this: when he is all hooked up and ready to have seizures, dropping the VNS dose may trigger seizures better than dropping meds. It may break through the Ativan which was so effective last time. If so maybe he can get his three seizures on the EEG and get out sooner this time. Not that we don't like it there--the nurses and everyone are so good.

Thank you so much whoever is praying. We feel it. We are in pretty good shape. This is very sobering and challenging but we feel like it will be good.

Passed!

David passed the Wada test this morning so that he made it through the last hurdle to get to the grid surgery! This has been many years in coming, being turned back at one point and told that he wasn't a candidate for surgery. We are so thankful for Dr Sutherling who doesn't give up!

Three Prayer Requests

Thank you, everyone, for showing your love by visiting and praying for me and my family.
Three prayer requests we have right now are that:
- I will have no seizures today or tomorrow, so that the Wada test (tomorrow) will go well and find all necessary information;
- Mom will continue to recover from a bad cold;
- Dad will also recover from the same cold.

Thank you, and God bless,
David Nemati

Welcome Sean!

Sean Graves is kindly going to become a respite worker so that we have his help during David's next hospitalization. He and our friend Kathryn and our sons Sam and John are all planning to spend nights in David's room to make sure David is ok if he has a seizure or needs anything. If we're lucky Sean might post an update sometimes.
Thanks, Sean!!!

More meds, less seizures

I finally called the doctor's office over the weekend and got advice to increase poor David's Keppra. He has had seizures about every two days since he left the hospital in early June. Except for two weeks on Ativan, but we can't overuse it or it won't be any good in the hospital for when they need to administer it. Too bad because it works better than anything David has ever taken. Which is why we pursuing brain surgery. I'm so ready to be DONE! Done with medical stuff, done with epilepsy, done!

Anyway, increasing his dose of Keppra seems to be working well, and so far no side effects. It can have a very depressing effect so please pray for him to be ok these last two weeks till surgery.

More soon

Things are scheduled to get interesting soon. I need to update and clean up the blog and redecorate a bit. (It's nice that it's free to do that kind of redecorating.)

David has a pretty major diagnostic coming up next Tuesday. He has lab work on Friday to prepare, then he has to be admitted to the hospital early Tuesday. In radiology they put a catheter into his femoral artery and do an angiogram to verify that he has good strong blood vessels, I guess. Then Dr Maleeva injects something to numb half his brain. The neuropsychologist then tests his memory and speech to make sure that both sides function well, or that he can lose one side because the other compensates, or something along those lines. That part only takes a few minutes. That is the Wada test.

The rest of the day he has to be in a hospital room so the hole in his artery can heal.

If all looks good then surgery is a go, on the following Tuesday.

Please pray for good results. Also that he does not have a seizure within the 24 hours before the Wada test as it would make us have to postpone it.

Success then....

We all enjoyed our six days camping at the beach. David kept thanking me over and over. He dug in the sand big-time, boogie boarded, kayaked, and had no seizures!

Sunday evening we returned then Bijan took David and Sam to a college-prep camp at Biola right away. Monday they were up early and off to do a ropes/group challenge day at UC Irvine. It was hot out and around 5pm, David had a seizure. He seemed to recover and be able to continue on with the group to dinner and an evening at Disneyland. He probably needs a rest or a long night of sleep--not a lot of that built into their camp schedule, but it will be interesting to see how he gets it. Maybe he slept on the rides last night or will doze off in an art museum. He usually pushes himself to get all the fun he can out of everything.

Two weeks of camp

Please pray for David as we have a week of camping and then he heads off right away to a teen camp. We are going to medicate him with the wonder drug Ativan which was too effective in the hospital when we wanted seizures. Hopefully it will hold them off now that he needs to not have any.

Updates! July 29 is still our day!

Good news! An insurance hurdle has been overcome. They approved the Wada test David needs and he is scheduled to have it July 22. If all goes well he can make his surgery appointment July 29. Yippee, Woohoooo, Yahoooo!!!

I have been hoping hard that David could have his next surgery/hospitalization/surgery on July 29 so we can be done before school starts, for David's sake and so that home schooling 4+ kids has a chance to begin well. (David is the + in "4+"). However, sometimes I wonder if I must be losing it to be so fixated on being in a hurry to do this surgery which is so grueling for all of us.

Thank you for praying!!! God is blessing us so much. This is a great process for learning to be peaceful in a difficult time. (An HMO is the way to go if you want these opportunities..... ) Bijan is also very thankful and felt the prayers yesterday as they made some really good progress.

Can y'all pray for Bijan?

If anyone is still reading this, can you please pray for Bijan?

Thank you soooo much. He took on a project at work that was really tough--something unfinished that was pretty hard, and no one left on it that had any experience. Also, very little money for man-hours and limited time. He assembled a good little team but they have to work at understanding what is wrong and it is taking a while. They have till the end of September. The stress is wearing him down, and next week is vacation, then he'll need time off in August if David has his surgery then. The project is called SCDU but they pronounce it skidoo.

When he first took it on it sounded vaguely familiar:
"Certainty of death. Small chance of success. What are we waiting for?"

Much Quieter Now

The last two weeks have been hard! We needed to rest a lot the first week home (after celebrating hard all weekend) then last week David had a cold which brings on all sorts of seizures. He had one every couple days.

In spite of that he and Sam wanted us to go out for an overnight to celebrate our anniversary. Sam assured us he could handle things. We went to Simi Valley, not far, planning on a BBQ restaurant and maybe the Reagan Library. In the evening we got the call: David had a seizure, it was bad enough that he threw up and cut his nose on a table. Michael made the call and said Sam had asked him to call, tell us about it, and that he was handling it. Wow. What great kids.

It was nice to get away but I did wake up in the night suddenly panicked that my cell phone didn't work, remembering that we hadn't left a hotel phone number for Sam, and just sure that David was in trouble, etc etc. Night is so weird that way. Or maybe just when I forget a few key things? Nothing was wrong.

This week David has recovered and is not having seizures. I forgot that life could be so...normal!

Prayer Request Update

Mom called the insurance today, and found that something, she initially thought it was the WADA test, had been approved. We were all ery excited, but we then found that it was an appointment to adjust my VNS (Vagus Nerve Stimulator; a pacemaker for the brain).
Anyway, most of the anxiety is gone, and Mom is planning on cancelling the July 29th appointment for the grid implant, so that if things don't work out so that I can have the WADA test, etc., finished, and have the surgery approved, on time to have the surgery then, we will have less to worry that someone else will have taken the next appointment, which is two weeks later on August 12.
Please pray that I will have good sleep. I am taking the same amount of medicine as I was taking before the depth electrode EEG, but I seem to be feeling the side effects much more now. Mom has speculated that it might be because I was eagerly looking forward to the EEG then, and I was looking forward to the next one afterward until news came that it would probably be postponed two weeks; and I have been somewhat disappointed that it may not be as soon as I initially thought. I know that it is wrong to worry; I should be thankful that though the soonest possible appointment may not work, measures are being taken so that it should not be postponed more than two weeks. Please pray that I will have comfort and strength from God, as He has lavished on me so far, as long as I have had faith, which I may now be lacking.
Thank you, and God bless,
David Nemati

Prayer Request

Please pray for Mom, who is beginning to feel overloaded.

After I came out of the hospital, she was told that no insurance verification was needed for the WADA test, a test I am to take to find out if the functions of the area of my brain that may be removed can be taken over by the other side. However, she found yesterday that before I get that test, which is only given on Tuesdays, I will need an appointment with a doctor, an appointment which is only given on Fridays, and I will need insurance verification first, a process which usually takes about two weeks.

Please pray that the doctors will have gotten quickly to work on getting the insurance verification, and that it will work out that we can get the appointment on (or by) the 27th, two weeks from today, and have the WADA test by July 1st. Also, most importantly, that Mom will have peace of mind and strength from God so that however this works out, that she will not have any anxiety.

The anxiety right now is that we have been planning to go on a beach camping trip with the rest of our church, starting July 2nd, the next week I and Sam are going to a week-long summer camp at Biola University, ending Friday July 11th, and two weeks after the WADA test and its analysis will be needed for insurance approval for the surgery which is currently scheduled for July 29, so that if the appointment and the WADA test don't get approved and scheduled for two weeks from now, we will need to adjust a heavily loaded schedule.

Thank you all very much for your prayers! Though I had a seizure last night, still have a fever, and have had some auras today, I think things are getting under control, and I have not had any more full-blown seizures yet.

God bless,
David Nemati

This is why we're doing this

Yesterday David had a seizure.
(I had just finished tidying up the blog and posting about how he had had none and what good news that was.)
In my gloom afterward I finally remembered that I usually check his temperature and see if he's forgotten a dose of meds, as those usually explain a seizure for him. His temp was 99.5 which is high enough for him to provoke a seizure. So it was good to find there was a cause we could do something about.
A small fever like that is hard to prevent or even notice so he has been very vulnerable to seizures in spite of all the meds and the VNS implant. This has been the one last trigger to conquer and nothing has touched it. Except Motrin, etc, but he can't take that all the time.
So we are really thankful to be in the running for surgery.

Doin' Well

Thank you for all your prayers!
My pains are mostly gone. The first few days after I came home, I had to take two pills of a pain medicine prescribed at the hospital every four hours, the maximum amount, but now I'm only taking one each morning and one before bed, and Mom has noticed how the stitches are starting to look better.
It was funny, the other day we went to a party, and up till then I had needed to wear a beanie to cover my stitches, and we thought I should keep them covered so that no one would have to see them, and to look more dignified we decided I should also wear a British/golfer's/Pevensie cap on top. So, when we got there, I met a friend who is a few years older, and he greeted me with excitement as all others had, and it was only later that he told me that he hadn't remembered then that I was just out of the hospital, but rather had thought that I was starting a new fad! It was very amusing!
Please pray that the doctors' conference today will go well, being blessed with wisdom, and that God will bless the next step.

July 29?

I was able to make an appointment for David's next and hopefully LAST adventure in that hospital room. It is for July 29. I am so thankful that he might get done and be somewhat recovered by the time school starts.

Bijan's aunt and cousins are coming from Iran this summer for a visit and will stay with us August 8th weekend. So they will probably see David in the hospital. We are all going to try to learn Persian quickly w/ Rosetta Stone in the next few weeks.

Next step: Wednesday and Tuesday

Please pray for this Wednesday when David's case may be discussed in the doctors' conference. It sounds like they will decide where on his brain to place the grid that he will need in this next (and hopefully last) step. Pray they will make a good decision and land the grid over the bad spot and find the source of his epilepsy. If that happens then he will get surgery when they remove the grid.

I was able to get our follow-up appointment moved up to Tuesday June 17. (Woohoo!!!) If they have gone over David's info in this conference then we maybe we can start making appointments for the next hospitalization. It would be really nice if he could have it done and be recovered by the end of summer.

Catch up

David is doing well but tired. Friday morning he was eager to get out. When we got home he went right to bed and slept four hours. He sat through care group then had a long night of sleep. Saturday he took it easy and worked on his physics test. In the evening we went to a graduation party and he talked and danced a while then got tired and wanted to go home after only 4 or 5 hours. :D Not bad, but not the usual party animal!

This morning he enjoyed church and a spontaneous party afterward which is still going I guess as he plays Monopoly with Andrew.

He has some gnarly looking stitches on his temples and has been taking Vicodin regularly for head pain but he's getting normal fast.

It is so GOOD to have him with us again and to be away from the hospital---though it was wonderful to be there! Our nurses were grrrreeeaaat!

David did so well this time...

This visit was a total success. They captured three of David's seizures on EEG. They all looked the same. So the doctors can see that they come from one side of the brain, from only one area.

As a reward, it looks like David will be invited back later to have a grid--similar to this only a flat set of wires on the brain surface. Not fun, but it is a huge blessing that he could pass all these tests and still be in the running for surgery that could heal his epilepsy!!! Hooray!!!!! I hope that we could do all this before the end of summer.

Thank you for the love, the prayers, the many meals and the support. It was really hard but we made it.

I will keep on blogging.

He's up!! And next....

David is up, uncabled, no IV or anything! He gave backrubs to me, to Dr Maleeva and to nurse Reyna. He walked down the hall and out to the balcony and had "fresh" air for the first time in 18 days. He has a headache but otherwise is ready to move on!

The Next Big Step: Dr Maleeva said will probably be the GRID. Second verse, same as the first, little bit longer and little bit worse! We don't go to a follow up appointment till July 2 so the next hospital stay can't be till late July at least. But we all need a rest.

Post Op

Dr. Ross just came out and said David did well in surgery to remove the wires.
They will watch for bleeding then send him home tomorrow.

Pre-Op

David is in his bed still but now in the pre-op area waiting for surgery to get his probes removed. He had a great night of sleep last night! He looks bright eyed and bushy tailed.

Surgery is scheduled for 11:30. I think they will keep him overnight to keep an eye on him, then he can come home tomorrow morning. Then...care group tomorrow night, visit the Graves on Saturday night, church Sunday morning, and who knows what next? It will be so good to have him back with us!!

Triplets!!!

Dr. Maleeva came in today and said:

1. That the third seizure matches the other two, implying that there is only one source of the seizures (HUGE praise!);
2. That no new data can be gathered with the depth electrodes, meaning that I will have the electrodes removed tomorrow, and be out Friday (Home Again...!);
3. And that the next step will be decided at the neurologists' conference.

Please pray that the EEGs will supply enough data to pinpoint the spot where the seizures start, so that I will not need another test, a grid of electrodes placed on the surface of my brain. If it is God's will that I have that also, I do not object at all, though.

Thank you all again for your prayers, which God has answered and will answer in His good time!

Yes, so many blessings

I guess I'll start this post with reflection on how much I, and my family, are prayed for and loved by those around us and by God. Our entire church and more have been praying for us, making many differrent great requests, and then the Holy Spirit has interceded for us, and now my stay is nearly over!
As you can guess from Mom's post below, I have very much enjoyed the preperation over the last few days (especially yesterday, of course), and have found little difficulty being sleep-deprived (4 hrs/night, 0 last night). God has given me the seizure which I have been waiting for, about 8:30 (judging by the post time of Mom's post), and we are all overjoyed that the schedule seems to be to have the probes removed tomorrow!
This has been a wonderful hospital, with kind, friendly, and generously helpful nurses, as well as a decent menu for the room service, which I am only now starting to get a little tired of - this menu has satisfied a picky eater for over two weeks!
Thank you, everyone at SGA, for all the attention at graduation last night, for visiting me afterwards, for the prayers, and (DON'T feel bad if you didn't) for the gifts.
Let us all praise God, thank Him for bringing me this far and giving me the third seizure today, pray that whether it be by surgery or by miracle, that I will be healed of the epilepsy, and that tomorrow's surgery to remove the depth electrodes will be blessed and protected.
IOU a lot of prayer. Please call me at (626) 535-6041 if you have any prayer requests which you would like me to attend to.

THREE! and so many blessings

Raffi just called and said David had his THIRD seizure!! She said it looked good!

We had so many good things to post already! Graduation was a great night even though David was stuck in his room. Bijan got an audio connection so David was able to listen to the whole event. Many people mentioned him and there was so much love and support for him. (Why are you all so good to us??!)

After graduation was over we visited David with champagne* and cake and chocolate and gifts, and about 25 of the teens/college age kids from church showed up too! (After the champagne--sorry, guys.) Michael and Kathryn lost count at 30 in the room. I have got to post the photos somehow. It was awesome!! There was a time of prayer for David and he played the goofy music video we made before he went in.

At least several other moms felt pretty bad about his missing graduation but we tried to encourage each other that God had something better. That was like my mantra all day. Whoaaa! The windows of heaven opened up last night and poured out...friends! into his room, so that it (almost) couldn't contain them!

*Medicinal--recommended by (anonymous) members of his healthcare team to provoke seizures when all else fails. Didn't work! But it was fun to try.

Waiting still-ly

I wish things would be this quiet at home, when we don't want seizures.
"He satisfies the longing soul and fills the hungry soul with goodness." Psalm 107:9

Still waiting

Waiting is good. Patience is good. Thought I should post that update.

If #3 happens soon

Dr Ross said if David has his third seizure in the next hour or two then there will be time to look at the EEG and assuming that's ok, to pull out David's wires in the morning, watch him to make sure he's ok, then send him HOME tomorrow afternoon!

We expected not to go to graduation but now that it's so close it's really hard not to hope.

Please pray for me to be patient. I'm tired. Thanks!

The Third One Should Be Here Soon...

Last night I was up till 3 AM and was wakened at 7 in the morning, was told to abstain from chocolate, etc. - not to avoid the seizures caused by caffeine, sugar, but to make me ASAP (as sleepy as possible) - , and was told to hyperventilate for about 5 min. straight, to start a seizure. A nice, big aura started, but it didn't turn into a real seizure.

And so we are doing the same thing tonight and tomorrow. (As you can probably guess from the time at which this was posted!) It's midnight, and I'll be up 3 more hours, and then I should wake up about 7, and then I'll hyperventilate again, and hopefully it will overpower the Ativan that remains in my system!

Thank you all very much for your services and prayers! I am quite blessed!

Bending metal

This morning Angie Cunningham read from Psalm 18:

"It is God who arms me with strength and makes my way perfect. He makes my feet like the feet of a deer; he enables me to stand on the heights. He trains my hands for battle; my arms can bend a bow of bronze. You give me your shield of victory, and your right hand sustains me; you stoop down to make me great. You broaden the path beneath me, so that my ankles do not turn."

Saturday Dr. Sutherling (may he live forever)* said something about the possibility that when Seizure #3 comes it may clarify whether the bad spot is in the frontal or temporal lobe. Right now they think it's one of the two but can't tell which. If it's clearly temporal then we may be able to skip the next step which would be grid implant surgery and more seizures for EEG.

So this morning when I heard 'bend a bow of bronze' I thought of David's wires and prayed that God would bend the wire a bit to pick up the signals for the next seizure so that it could show what Dr. S hopes.

*We think very highly of him.

Hello from a night guardian

Most of you probably don't know me, so let me explain first what I'm doing on this blog!  My name is Kathryn Streeter, and I am officially David's respite care worker.  I got to know the Nematis while they were attending St. Luke's a while back, and was drawn to the family's warmth and courage.  So now I am still a seminary student by day, but whenever David is in the hospital, I become a respite care worker by night.

This time around, I have been at the hospital every other night--David's brother Sam stays there on the alternate nights when I'm not there.  It's important for someone to stay overnight whenever possible, since David has historically often had seizures in the early morning.  So the night guardian's job is to sleep on a cot in David's room, and to be ready to wake up and take action if anything happens.

Most often, what happens at night is that David's pulse and blood oxygen levels vary enough to cause the monitoring machine to start beeping.  So sometimes the nurses give him oxygen, and other times we just need to adjust his eyeshades if they are partially covering his nose.  Another common nighttime occurrence is the tendency for him to scratch his head--so sometimes the nurses have to put his hands in restraints, uncomfortable for him though they may be, in order to keep him safe.

I have witnessed exactly zero of David's seizures over the past two weeks--they seem to be happening in the daytime now!--but what I have witnessed is even more of the Nemati spirit.  David remains astoundingly positive, even with probes in his brain.  The State of California pays me to be a night guardian, but Sam cheerfully does the same thing on alternate nights for no pay.  And one morning I woke up to find Beth also in the room--she had driven to the hospital at 5 am because she was worried about David and couldn't sleep.  And at that hour, she had packed some breakfast for me, too.  I am amazed by the strength and the care of this family.

So here's your behind-the-scenes glimpse into another aspect of David's hospital experience!  And bless you all for your prayers, which keep him safe by day and by night.

They are twins!

Ohhh yeahhhh! The two seizures look nearly identical on the EEG recordings. We kept getting a caveat that they need to look the same or else it means that David has two bad spots in his brain which would then mean no surgery is possible to heal him.

They still want to see a third. Dr Sutherling said that so far the probes show that either the seizures originate from the frontal or from the temporal lobe, and he hopes that another seizure might help them see which one. Temporal would be Great News as he may be able to go straight to therapeutic surgery and skip the grid. Maybe, maybe....

ANOTHER!

Two down, one to go. Another seizure at noon today!
More Ativan as David turned a bit blue so if this pattern keeps up we'll look for another one after several more days. Maybe we should set up a pool for the day and hour--anyone? After the next one it sounds like they will send him home.
Diagnosis-wise, Dr Maleeva showed us the area on the brain where the probes picked up seizure signals. It may; be left temporal or frontal. If today's and the next one look similar they will probably recommend the grid surgery which is just like this only worse. This is good news.
Yesterday was kind of a drag and I know a lot of you who saw me prayed so THANK YOU! Everything looks so much better today. "Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge him and he will direct your paths." I needed to adjust my "leaning".

Hmmmm

Yow. Sunday's seizure seems to have started from deep in the frontal lobe. We have no idea what this means but it is not something we've heard about.

However, they keep telling us that they want several seizures before coming to a conclusion so it is too early to discuss this very much. At this point that sounds pretty good....

The Ativan drama goes on. I watched the video of David's seizure from Sunday. To me his seizure looked typical for him; a nurse had earlier said it was awful and I wouldn't be able to believe it! So what the nurses saw looked like something progressing dreadfully that needed medicating with Ativan. Before I realized there was such a disconnect I really pushed for delaying or reducing or substituting something else for it and it was a dead-end road. Late in the day David was able to communicate better to Dr Maleeva who said she would look into it. Hopefully they will be slower to administer that medicine as it seems to stop seizures for about 5 days in David, and we want more, sooner, while he is in the hospital.

A Little Correction, Update and Praise

In yesterday's post I mentioned that a nurse had said that Dr. Sutherling had said that Sunday's seizure started in the "front capsule", but Mom asked another, who had been with the doctor, about that, and she said that he hadn't said anything diagnostic. That is good news, because "front" would probably mean frontal lobe, and a check on Wikipedia implies that a capsule is a bundle of nerves, a highway of brain signals. Seizures starting in the frontal lobe would mean that I would need another diagnostic surgery, a grid, which would be much more intrusive than these depth electrodes (though if it's necessary, I wouldn't be too anxious), and then when the source is pinpointed, it could turn out to be something which can't be removed without causing a handicap. So, please continue to pray that the source will be pinpointed in this operation as a removable part.
Also, we were told this morning that the Ativan I was given after Sunday's seizure was necessary, because that seizure had generalized - spread through my whole brain - and if those are allowed to repeat, there is risk of status epilepticus, having seizure after seizure, frying my brain. So, I would like to add to the prayer requests that there will be no more generalized seizures, for safety and so that Ativan will not be needed and this test can be finished quickly.
Thank you all very much for your prayers and cares! I would like to be done soon, but I am feeling very well, the company at this hospital is wonderful, and every day is better! Praise God from whom all blessings flow!

Waiting

David is waiting with all his might for another seizure.
Apparently the seizure on Sunday went on for a while till he started turning blue so the nurse had to give him Ativan. The ativan really suppresses seizures for several days. He has felt a lot of auras, some that last a half hour which is really unusual. None have developed into seizures but something is bound to happen soon.
The surgeon Dr. Ross saw David this morning and wanted him to hurry up and have his seizures out of concern for possible infection. So one of his meds was reduced a bit more this morning.
Please pray he doesn't have such a bad seizure that he needs Ativan again.
He is in great spirits and looks good. He is even willing to tackle some of the homework that is piling up. Good Boy!!

One Down, 2-4 to go.

I've had one seizure, and it has been called a "very good" one - not that I'd ever want it at hooome - but it has supplied some good info; I just heard that Dr. Sutherling thinks the EEG shows it coming from the front capsule.
Now, to narrow things down, and to eliminate the worry that the seizures start in multiple places, I need to have at least two more seizures, to make a total of 3 to 5. And I'm very eager to have them here!
I have been feeling very good today, and my jaw muscles (which have probes going through them) are continuing to get better - I even decided they were in good enough shape to have my first burger, since I went to Connal's with the other SGA seniors on Sunday the 18th after church, for dinner.
So, please keep up the prayers! Please continue to pray that I will have seizures, starting in the anterior mesial left temporal lobe, or somewhere that can be removed, and only one place, numerous enough to make the doctors certain, and at the right times so that they can be fully recorded on the EEG without causing any hazard.
I have been feeling very good, and thank you all very much for your prayers, for helping Mom and Dad, for visiting me and for visiting this site!

ONE SEIZURE!

It seems like we've been waiting and waiting and here it is! At 6pm tonight Sunday he had a good seizure and it sounds like it was recorded well on the EEG. We'll know more tomorrow when the tech or doctor looks at the info.

The nurse gave him Ativan which tends to shut down seizures for a few days. We're not sure why he had to have it but we will ask about that tomorrow also.

Please PRAY that the data looks good and that it shows something good about his future prognosis. They want 3-5 good, well-recorded seizures so please also pray for more.

Thank you God for today--David was in really good spirits this morning, we enjoyed two great worship services at our church, a good seizure happened, and JPL's Phoenix landed successfully on Mars! Our cup overflows.

God and adrenaline

The nurses here are the best. They remember David from his visit last year and it's like picking up where he left off. Last night Liz said "God and adrenaline--that's how we make it here. Mostly God." I said that's how I manage at home too.

Our care group met in David's room last night. I get overwhelmed with how blessed we are. David is getting this fabulous medical care and treatment just so he can have a normal life, and we have wonderful friends who find their way through the hospital on Friday night to encourage us and pray. And the nurses didn't complain about a rather large number of visitors!

David was kind of down after everyone left because he felt so tired and dull and not able to pray. I urged him to think of himself as the paralyzed man in the bible account whose friends did all the work of carrying him yet he got all the blessings and healing. I think he needs a lot of encouragement at this point.

Hands off

David looked great today. He has recovered from surgery and is eager to have seizures and get out!
He is being naughty and scratching at his head a bit. The technician that checks on the wires was pretty unhappy and scolded him and said he could get meningitis. Oh *%^%$& I thought. We come in with one kind of epilepsy and he leaves with two, if he even survives meningitis. OK, soul, you are not going to be afraid but trust in God.
David looked sober, even sad at that warning and decided he wanted seizures asap to avoid infection. That makes sense.
He shouldn't touch his head because he has ten wounds that are holes with probes going directly into his brain. Please pray for wisdom and self-control for this boy that he will stop touching and even ask for hand restraints if that is necessary.

Good night

It sounds like David slept well last night! Bijan is going to stay with him this morning and bring a Jamba Juice--idea thanks to Colleen and Chalene. I'm going to try to have a normal day at home and taking Sam out to class in the afternoon.

I love this job

Yesterday had a lot of challenges and we're still standing. Figuratively---David right now is tied to a chair for safety. He is feeling pretty good especially since I brought his computer to him so he has something to do. It's amazing he can sit up and isn't suffering any headache.

Anyway, he needed a LOT of care yesterday. His jaw hurt and he didn't care about eating so I had to coax him and feed him. I haven't been able to do that in a while! But I doubt he'll go for that today. The meds they brought for him were not exactly right a couple times so that took some effort to point out. In fact they were going to skip his whole 9pm dose of epilepsy medicine as they thought it had been given. Bijan said I have job security--yessss!

Around 3pm yesterday we finally got him the right kind and amount of pain medication and he rested really well for a few hours. When he woke up I had gone home for a couple hours for dinner. The funny thing is that David didn't really remember me being here much yesterday and sounded lonely this morning.

Good morning

David feels much better this morning. He is in much less pain. Now he is irritated by little things rather than by a throbbing head, which seems good.

He says:
Last night was rather difficult but now I'm feeling pretty good.

He had a huge seizure at 6 am today so they gave him a big dose of Ativan, then another big dose of it at 8:30 so he would make it through an MRI w/o a seizure. The stuff makes him kind of edgy but he is doing really well. Edgy for him is not too bad.

The techs hooked up his wires. He has ten probes with 7 or 8 wires each so it's a big bundle going into the EEG.

Now I have to order him some lunch and get him eating and drinking so they can get him off IV fluids.

Overall everything is going well and he is getting good care.

He ain't smilin' much

I just saw David for the first time today. He looked like he felt pretty bad. His head hurt. He threw up so they gave him some medicine for that. But I got one smile out of him, when I said "you've waited eight years for this day!" He liked being told that tomorrow would be better. He said he was tired and started falling asleep after a little while so that was it. I hope you sleep well, sweetie.

Resting in the ICU

Well, I just got to see David in the ICU. He is sleepy but we got to talk a little bit. Apparently he woke up wanting to get up, and they had to sedate him a little bit to calm him down. But he looked good when I saw him and wanted to know about the pictures we took this morning. He said he was pretty sleepy. His head has a fairly neat and compact cap/covering. There is one nurse per two patients here so he gets watched a lot. His nurse, Amy, said he will stay here tonight so they can watch him closely.

He's out now and fine!!

David did fine. The surgeon came out a few minutes ago and told Bijan that it went very well.

Dr. Ross did apologize for it taking so long -- said the equipment didn't work well at first or something like that. That keeps it interesting, doesn't it?

Thank you for praying. Thank you God.

David wrote this morning:
I'm outside the admitting room at Huntington Hospital. We got here rather early (planning to arrive ~5:30, expecting to leave ~5:00, but actually leaving around 4:45). I've been feeling good this morning. The Ativan I took last night (accidentally--I'd planned on taking it this morning) probably helped me wake up, right about 4:30. It was funny, right before I woke up, I was having a dream that it was 7:50 or so this morning, and I was still in bed, and then I got up and told Mom "if we leave right now we'll be just in time for the surgery!" Hmm, but the surgery is scheduled for 7:30 not 8:30. Ahh, I enjoy being eager for this operation, and hope Mom will be relieved of her anxiety.

He's in now

David made it in to surgery smoothly and is there now. The surgeon gave him a buzz cut and got him ready then Bijan had to go and is waiting in the waiting room. Hopefully napping--they got out of the house at 4:40 am. It only takes 15 minutes and they were supposed to be there at 5:30. David must have been really eager--this is not normal for him, at all!

Eyes on the Prize

David and Bijan are ready to head out early in the morning.

We'll keep the blog posted as we are able.

Church this morning was delightful. Thank you to all the dear ones who gathered around David afterward to pray for him! We are like the "paralytic" man in the bible story whose friends carried him on a pallet and even dug through the roof to lower him to Jesus. They did all the work but he got all the blessings and affirmation and the healing.

We are so thankful to have the prize of a healed David to press toward, but even more we are thankful that we can press on to grow in knowing and trusting God. Thank you, Lynn Baird and the music guys for an amazing morning of singing and preaching. It really was amazing.

On Track for Monday, cont.

Thank you very much for your prayers!
Yesterday and today have been especially good days, and I think Mom has been less troubled. Thank you for helping me with the Mother's Day gift.
Please continue to pray that Mom will feel easy as my surgery approaches, and that I will have no last minute anxiety - I might be sensing that right now.

God bless you, and once again thank you for your prayers,
David Nemati

On track for Monday

David is ready. We filled out paperwork at the hospital yesterday. He's healthy, free of ibuprofen, illicit drugs, (such a hard one for him ha ha), doesn't need a social worker in his life, and is eager to get in there at 5:30 am Monday.

Yesterday was not fun--I woke up at 5am and felt fearful about David. Was overbusy anyway and the car had to go to the repair shop. Hubby thought I'd said we'd be back from David and Sam's class at 2:30 to get the car but I'd said 4pm. D and S didn't come back from class when I expected and there was no cell phone reception. 95 degrees outside. I fully expected to wreck the car on the freeway but it didn't happen so it wasn't that bad a day after all. Though David might want me to have a social worker.

Today was a fun day for us as we saw Prince Caspian open at the El Capitan theater in Hollywood, along with a big group of friends, then came home and had naps.

Better are five days like this

David had a seizure yesterday afternoon. He gets warnings (auras) when he seems to be vulnerable and has had some serious auras lately. Finally it was like the storm broke. Hopefully it won't turn into a series. He feels good now and there's a lot going on between now and Monday. And God is caring for us! He'll steer this ship. We feel the prayers and love. I think we'd rather be here than anywhere. It reminds me of the verse in Psalm 84 "better is one day in your courts than a thousand elsewhere."
But we're still counting the days....

A Little Help With a Mother's Day Gift?

Yesterday I had a lot of thank-you's to give my Mom, as you can see by the rest of this blog, and one of the biggest ones was, of course, bearing so much of the difficulty of my epilepsy; talking to the doctors, taking me to appointments, dealing with insurance (!), always being ready in case I have a seizure, living with me having the side effects of all those medicines, and more.
So, last night I promised to pray for her, that she would have strength to deal with it all, and she was very happy. The thought came to my mind to spread the prayer request. I don't lack faith that God will listen to my prayers, but it would be a comfort that my voice is not calling alone, and that if I ever forget (memory trouble comes with seizures and some medicines), someone else will still be praying.
Thank you, Happy Mothers' Day all moms, and God bless!

And More Smiles

Today has gone well, too.
Though I stayed up till about 11 last night (homework.), I slept till about 8, so I've been purty well rested. I wasn't able to go to the hospital on the 6th, but God knows best. He may be giving me an opportunity to grow stronger.

Thank you for your prayers! God is good!

Smiles

This is great...I know people are praying and I wish I could say thank you. David slept well and woke up smiling, and said his night of sleep was "Great!"

Eleven to go

Not that we are counting the days, or anything.
David felt a seizure coming on today but it didn't develop. Yeaaa!
He hates Ativan.
He doesn't feel like he is sleeping very well.
We increased the dose of one of his other meds starting this morning so maybe that will help him sleep better and have fewer auras/seizures.
Please pray for the poor boy.
Thank you!

Thirteen days to go

Now I have accepted that surgery won't happen today. But we prayed for Deborah who had the surgery appointment this morning.
We have to hang in there till Monday 5/19.
David had a seizure today. He has nearly had one a few times over the weekend so the storm was brewing. I gave him some Ativan but he doesn't feel too good with it so if this keeps up we may need to find something else so he can be more comfortable.

It Is Earlier...

The news was that my appointment was moved from the 20th to the 19th.
One less day!
Mom also told me that she told R.C. that "we are ready", in case any earlier opportunity opens. :)

Might Be Tomorrow...

Miss R. C. from the doctor's office just called and asked to talk to Mom, and asked for her cell phone number when she heard that she's not here. Before Mom left, she asked me to call her if R. C. called with news that I'll have tomorrow's appointment. I asked if I could leave a message, but she wanted to talk to Mom - making it uncertain at the moment whether it's the hoped-for news, but also giving evidence that it's something important that the parents need to know promptly.
I'll call Mom in a few minutes and then follow up on this post.

Steady On

It looks like we will have to hang in there for two more weeks. David did really well this week but this weekend he has had almost-seizures three times. He would feel like one was coming and go sit somewhere but they never developed. We have Ativan and gave him a little bit. It seems to really clamp down on the seizure activity.

But also--Tuesday hasn't come and gone yet. I am still hoping and will listen for the phone tomorrow just in case something happens so that he can go this Tuesday after all.

Surprise Change of Plans

We got a call this morning from the surgeon's office, with news that I will have my original appointment - May 20. It is a surprise, and somewhat of a disappointment after the excited anticipation, but it appears to be God's plan, so so be it.
It will mean absence from graduation, but it also will mean that I can directly attend my classes and have more time to set up things to be present with Webcam.

Thank you all for your prayers, and please continue!
God bless,
David Nemati

Beautiful Sleep!

David's sleep has been getting better and better. Today he woke up looking really good. Ahhhhh.

Trouble commenting?

Some friends have told me that they have tried to leave comments, but have had difficulty.
I tried logging out and then leaving a comment, and it appears that to leave a comment you need to have a Google account (something I much recommend), and enter its username and password. There is another alternative, which I know little about, in case you do not have a Google account and do not want one.

Someone's Prayin', Lord...

Mom just talked to the surgeon's office, and was told that the person who had an appointment for next Tuesday isn't providing insurance information, and that if she can't find it by Thursday, I may get my electrodes inserted next Tuesday!

And with the seizures and semi-insomnia I've had lately being followed by this apparent opportunity, I think it's clear that God wants me to enter sooner. Praise the LORD who cares for His children!

Please continue to pray that all seizures will be found to start in the anterior mesial left temporal lobe of my brain. Those were the doctor's orders!

Give Thanks in All Conditions

After having some powerful medicine injected at the hospital last night, to stop the seizures and also improve my sleep, I woke up this morning at about 3 AM, and after about 20 minutes I asked Mom and Dad for help. I was advised to take some Tylenol, and spend some time praying and reading in the living room. About an hour later, they came and joined me, apparently having spent the time which could have given them good sleep thinking about how to solve my difficulties. After some time talking and looking at information about the medicines which I am taking, I took my morning dose, was told to fast until after blood samples are taken later this morning to investigate the blood-levels of my medicines.

Now for the title. Though I would not be surprised to have more seizures, I haven't had any yet today, (and yesterday my first of three started about 4 AM). And my parents are going to trouble, sacrificing precious sleep, out of love for me. Because I am having sleep trouble, which has long been a notorious trigger for seizures, we will be asking today if I might be able to have my depth EEG sooner- and event I've been eager for, and with the current schedule would overlap some school events, such as graduation, which I might now be able to attend if the surgeon has time soon.

Whether the "maybe" hopes above are fulfilled or not, these past few days have been some of the most wonderful time of my life, for though I have had five seizures plus more auras that didn't generalize, those very events have been a great opportunity to observe the love of the parents God has blessed me with. These direct observations of love are complimented by finding out after an event what others have done for me while I was unconscious, such as Rachel's phone call on Saturday night and the prayers of others at church yesterday.

I will sing praise to the Lord, who has drowned me in His Love which He displays through His servants around me on every side! Though I suffer from an illness, I thank God for the lessons He has taught me through it, and for the healing that appears to be pending!

More

David had three seizures today (Sunday) so we finally called the doctor. The answering service said if we want to see the doctor, go to the ER! Alright, so Bijan took David tonight and they gave him some Ativan which is a good knocker-outer. He's still standing though. Hopefully this will stop this cluster. Three weeks to go till we WANT seizures in the hospital for the EEG. We can do this!

Our church is so great. David had a seizure this morning out in the lobby and there was so much kind concern and prayer. We are being lifted up and carried through this, not going through it alone.

We need prayer for strength and peace. And of course that this round of seizures would stop. Thank God for the fabulous doctors we have here, just 15 minutes from home. Thank you, thank you, thank you!

Another flare-up

David had a seizure last night at home while we were out at care group. Everything was so quiet for a couple weeks. I usually try to figure out if there is a trigger for it -- this time I'm blaming lack of sleep. Since he started Klonopin the seizure control has been great but for some reason he wakes up early in the morning. (Dr Maleeva thinks we're strange since Klonopin usually makes people sleepy, groggy, dopey, etc.)

Anyway, it was amazing that David actually had enough warning to call Bijan's cell phone to tell him he was about to have a seizure. He got a few words out then Bijan could hear him making noise. Rachel was home with him so after a few minutes she called and told us what was happening and assured us that David was ok.

Interesting context: at care group we asked for prayer for our kids at home as Bijan and I had planned to take a little Cessna trip to Santa Barbara today (Saturday), eat lunch and spend time on the beach. Bijan was thrilled with the romance of it all. (My thoughts were more along the lines of having enough air sick bags, cold water, cool enough clothes to live through this 90+ degree day in that little flying oven.) So we had to cancel these plans but were very thankful that David had a seizure before we left, if he was going to have any. God is so unpredictable--this was not what we were praying for!?! But we are learning to go with the flow and be thankful, whatever.

So far this morning he is fine. I gave him a bit extra sleeping medicine last night so maybe that is the next step.

As we learned in Latin: Deo Gratias!!

A Seizure Last Night, But Feeling OK

As you can see by the blog posts, I haven't had a seizure in about a month and a half, which is a good amount of time.

Last night, while the rest of the family went to our church caregroup, I stayed home to do school-work, and my sister Rachel stayed to watch a movie. At about 9PM, while Rachel was getting ready for bed, I felt a seizure coming on, and so I rushed to the phone and called Dad's cell phone. By the time he had picked it up though, I wasn't able to say much, but it was understood that I had a seizure, and I was safe in a chair until they came home, and gave me some extra medicine.

This morning I am doing pretty well, and though it has been a pattern that one seizure is followed by more, I am feeling well and haven't had any small auras yet, as I did for a few days after the two seizures that were posted about on April 11.

New prescription

Wow--Dr Maleeva (neurologist) spent a full hour with us on Wednesday. Someone must have prayed, so thank you!

She explained thoroughly about the depth electrode surgery. I mentioned that I'd been talking with a mom whose son had the grid last summer; he'd had complications, and they didn't get enough tissue out when they did his therapeutic surgery, so he is still having seizures. So Dr M spent a long time telling me how that case was difficult and David's seems more straightforward. She drew sketches of brains and probes and grids to illustrate all the things she was saying. It was cool if you like technical medical stuff and can keep your mind off the personal aspect.

The best case scenario for David in this coming step is if the probes detect his seizures starting deep in the mesial temporal lobe. Also, they want to see one probe detect a seizure for 5 or 10 seconds then see it spread to other probes.

In simpler terms, she then told us: 'Wake up every morning and say, "God, please let David's seizures begin in the mesial temporal lobe!" ' There we have it. Thank you for joining us!

Next up...

Wednesday (4/16) David sees the neurologist for a checkup.
He hasn't been feeling as good as usual since the Klonopin he started last week is having some minor side effects. It's like taking Benadryl over and over and over--you feel a bit edgy and not quite yourself. He also might have a cold coming on and has a little fever, which often triggers seizures.
Please pray for a good doctor appointment, for good health, and for us all to be patient with these next 5 weeks of waiting.
Thanks so much for all the support and encouragement we enjoy!

Two Seizures, Calming Down

Sunday I played Ultimate Frisbee with some friends after church, got rather tired, and, imprudently continued. After two games, twenty goals total, I started playing the third game and a seizure began. I was able to tell a friend before the relatively short aura ended and I went unconscious. I awoke later with him still sitting next to me, as a very good, helpful and faithful friend.

Rarely do I have one large seizure and not have another. Monday I had a seizure in front of the laptop I'm typing this blog on, with a rather short aura (conscious period of a seizure) again.

Since then, I have had several small auras every day, but no more have yet become grand mal.



I am very thankful for the weeks with no seizures, for the extreme conditions needed to start Sunday's seizure, that there was only one following seizure, and for the family and friends I have!

Two more good days

David felt good yesterday and today so thanks for all the prayers.
He is taking Klonopin regularly now which can be pretty powerful but he doesn't seem at all groggy. Some meds that are supposed to have minimal side effects have been a lot worse for him than this--a lot of managing epilepsy seems to be trial and error.
It sure is easier to take a day at a time when days are like this and not like last Sunday and Monday.

Another quiet day and night!!

Thank God David had no seizures yesterday or during the night. He is feeling vulnerable like he might have one but this is an ok way to continue. In six weeks they will want him to have seizures in the hospital.

We spent a couple hours with Bethany Baird having senior photos taken yesterday afternoon, some in the studio and many in Eaton Canyon. David really got into it by the end. It was a great outing too. When we get the photos it will be fun to add some to this blog.

-Beth

All Quiet

David had a good quiet night. Yahoooo! So thankful.

-Beth

Seizure day

After a beautiful weaning off Depakote, tapering off the medicine for four weeks then another week of none, all with no seizures and no auras*, David had a seizure Sunday afternoon while playing ultimate frisbee on the church campus, then another one today around noon. We are adding Klonopin to his meds which will hopefully help. It may make him pretty groggy but we just have to make it to May 20. Please pray that he won't have such frequent seizures that we have to have him go back on Depakote or delay the phase 2.

Thanks--
Beth/Mom

*Auras are a warning feeling preceding a seizure and sometimes they don't develop. For David they usually mean he is not very resilient and may have a seizure before long.

Phase two in May

Dr. Ian Ross, neurosurgeon, put David on the schedule for a Phase Two stay in Huntington (Pasadena, CA) on May 20.

Goodbye to Depakote

One of David's medicines has to go as it thins the blood which is not good for brain surgery. He has been weaned off it over the course of a month. (March)

Phases of pre surgery testing

To get to the point of having brain surgery to remove a bad spot that causes epilepsy a person goes through several phases of testing. Phase 1 is the hospital stay with electrodes epoxied to the surface of the scalp, and seizures encouraged so the doctors can trace where they come from.

Phase 2 is a similar procedure, but with wires inserted through the head into the brain. One method is called depth electrodes, with long probes going through holes drilled in the cranium. The other uses a grid which is more invasive to get put in place, and involves recovery in the ICU and a whopper of a headache.

History of David's epilepsy

David was born in January 1989 in California. He was the most wonderful baby ever! He was an early talker and very bright and loving.

In early 2000 he complained of feeling funny.

In May 2000 he had a recognizable seizure.

June 2000- diagnosis of complex partial epilepsy. Began medicine. (Tegretol)

Late 2000- seizures at a rate of several a week; he would become unconscious and fall down.

January 2001- switched medicines to Topamax. (Dope-a-max!) Bad side effects: very slow speech, very poor memory, cognitive disaster.

June 2001- Started seeing Dr. Huf, neurologist. Heard the word 'surgery' for the first time w/ regard to David's treatment. Yikes.

August 2001- Guest of Huntington Hospital's Epilepsy and Brain Mapping unit for video EEG. Electrodes epoxied on the noggin then tried to have seizures. The point: to identify a spot in the brain where seizures originate. If so then maybe it can be removed and voila! no more epilepsy. Results: not clear. More testing recommended.

August 2001- Dr. Huf (bless him) took David off Topamax and started Lamictal.

Fall 2001- Lamictal somewhat better re side effects, less seizure control. David now having 1-2 seizures per week.

February 2003- David began taking Keppra, another anticonvulsant. It cleared up a lot of little seizure feelings he had, many times a day. And for seven wonderful weeks no seizures. Then they started again, at a rate of one every week or so.

June 2004- began seeing Dr. Imbus (bless him) who added a third drug, Depakote, to David's medications. Seizures reduced a lot, down to several situations such as fever and exertion. So if he could only not work up a sweat or catch a cold or fever ever, we'd be done! hmmm.

Summer 2004- Another video EEG vacation, this time at UCLA. Again inconclusive.

August 2006- Surgery. But twelve inches south of the brain. David got a Vagus Nerve Stimulator unit which is like a pacemaker with a lead attached in the neck to the vagus nerve. The vagus nerve runs up to the brain and down to the stomach. It somehow tells the brain not to have seizures and tells the stomach it is full. It also tells the brain it is happy so the gadget is approved for treating depression. A panacea!

Fall 2006 to Spring 2007- the VNS allows David to exercise without any more seizures! Yeah! But it causes insomnia, which is a little-reported side effect but does show up in the manufacturer's list of patient complaints. Poor sleep caused more seizures. But unaware of what was going on we would see more seizures, then have the doctor turn up the doses the VNS was delivering. Finally in May David was totally exhausted. We figured out what was going on and got David on sleeping medicine. Ahhh- problem solved and David felt great. Still having unpredictable seizures triggered by slight fevers. Medicine side effects are also a major problem.

Spring 2007- started seeing Dr. Sutherling.

July 2007- ten days in Huntington Hospital for a third time around with video-EEG. Medicine doses drastically reduced to induce seizures for the EEG. Unfortunately seizures spread too fast to show where they come from. But doctors felt optimistic that David does have a "spot" that might be removable.

Fall 2007 to Winter 2008- testing to move toward surgery.