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.