Monday, June 30, 2008
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.
Friday, June 27, 2008
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.
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.
Wednesday, June 25, 2008
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?"
Monday, June 23, 2008
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!
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!
Monday, June 16, 2008
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
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
Friday, June 13, 2008
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
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.
(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.
Wednesday, June 11, 2008
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.
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.
Tuesday, June 10, 2008
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.
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.
Sunday, June 8, 2008
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.
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!
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!
Thursday, June 5, 2008
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.
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.
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.
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!!
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!!
Wednesday, June 4, 2008
Triplets!!!
Dr. Maleeva came in today and said:
- That the third seizure matches the other two, implying that there is only one source of the seizures (HUGE praise!);
- 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...!);
- 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.
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.
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.
Tuesday, June 3, 2008
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
"He satisfies the longing soul and fills the hungry soul with goodness." Psalm 107:9
Monday, June 2, 2008
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!
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!
Sunday, June 1, 2008
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!
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.
"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.
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