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.
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Pray for David
+Pray for no seizures and healing from epilepsy.
+Pray for no colds (often come with seizures), wisdom in matters of health.
+Thank God for the period of no seizures from July 31 2008 to July 7, 2009, even with one less medicine and his VNS implant being turned way low inadvertently.
+Thank God for a full recovery from the trauma caused by the grid on August 1 2008.
+Thank God for the period of no seizures from July 31 2008 to July 7, 2009, even with one less medicine and his VNS implant being turned way low inadvertently.
+Thank God for a full recovery from the trauma caused by the grid on August 1 2008.
+Thank God for strength during the first four semesters at college.
+Pray for strength and wisdom through the third year, taken from home.
+Thank God for three months with no seizures, from early August to early November '11
+Pray for that pattern, of no seizures or even auras, to resume and remain
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2008
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June
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- Two weeks of camp
- Updates! July 29 is still our day!
- Can y'all pray for Bijan?
- Much Quieter Now
- Prayer Request Update
- Prayer Request
- This is why we're doing this
- Doin' Well
- July 29?
- Next step: Wednesday and Tuesday
- Catch up
- David did so well this time...
- He's up!! And next....
- Post Op
- Pre-Op
- Triplets!!!
- Yes, so many blessings
- THREE! and so many blessings
- Waiting still-ly
- Still waiting
- If #3 happens soon
- The Third One Should Be Here Soon...
- Bending metal
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June
(23)
My angel!
2008
WHAT'S UP WITH DAVID--updated 9/19/09
David was diagnosed with focal epilepsy in 2000.
He has tried seven meds and had a device implanted, but still has had seizures and side effects.
Since summer 2007 he has been on a track toward surgery, which can be very effective. In July 2008 we got to the final stage which is to have grid surgery.
Grid surgery on July 29 involved placing a silicone grid of electrodes directly on his brain. A cable connected his head to an EEG screen, and he stayed in his hospital room to have seizures. If the grid shows where seizures come from then usually the spot can be removed and the epilepsy is gone or alleviated greatly.
Things went wrong on August 1 when the grid turned out to be very irritating and caused a lot of fluid buildup and swelling so it had to be taken out in emergency surgery as David started slipping into a coma. The opportunity to do therapeutic surgery was lost for the time.
But things started going well as he had no seizures for 11 months and 1 week after coming out of the hospital. Things are really good because he (accidentally) started taking one less medicine, and because his vagal nerve stimulator was (accidentally) set way too low after surgery, and still no seizures. This is very unexpected so maybe the trauma altered something in his brain and healed his epilepsy.
Despite some bumps things are still going well, with very few seizures. After asking for the VNS to be turned down, then having many more auras, turning it back up, and having sleep trouble, he has had seven seizures since July 7, '09. However, each seizure has been gentler than the last, and a common denominator has been found in many of them - looking at computer/TV screens too long.
He has tried seven meds and had a device implanted, but still has had seizures and side effects.
Since summer 2007 he has been on a track toward surgery, which can be very effective. In July 2008 we got to the final stage which is to have grid surgery.
Grid surgery on July 29 involved placing a silicone grid of electrodes directly on his brain. A cable connected his head to an EEG screen, and he stayed in his hospital room to have seizures. If the grid shows where seizures come from then usually the spot can be removed and the epilepsy is gone or alleviated greatly.
Things went wrong on August 1 when the grid turned out to be very irritating and caused a lot of fluid buildup and swelling so it had to be taken out in emergency surgery as David started slipping into a coma. The opportunity to do therapeutic surgery was lost for the time.
But things started going well as he had no seizures for 11 months and 1 week after coming out of the hospital. Things are really good because he (accidentally) started taking one less medicine, and because his vagal nerve stimulator was (accidentally) set way too low after surgery, and still no seizures. This is very unexpected so maybe the trauma altered something in his brain and healed his epilepsy.
Despite some bumps things are still going well, with very few seizures. After asking for the VNS to be turned down, then having many more auras, turning it back up, and having sleep trouble, he has had seven seizures since July 7, '09. However, each seizure has been gentler than the last, and a common denominator has been found in many of them - looking at computer/TV screens too long.
1 comment:
Friday June 27: Insurance approved the last test David needs before surgery so we were so happy to schedule it for July 22.
Monday June 23: Quiet now after a week w/lots of seizures triggered by a cold. Last week Dr Maleeva said she thought we had a good chance of getting everything ready by the July 29 date, so that was very encouraging.
Friday June 13: Whoops--one seizure late yesterday but seems to be linked to a fever and he had no more.
Thursday June 12: No seizures at home, so far!
Sunday June 8: A fun morning at church and the party continued w/ a lot of friends over for lunch
Saturday June 7: Attended a fun graduation party
Friday June 6: Good recovery and a happy return home.
Thursday June 5: Successful surgery to remove probes. A great night of sleep after 4 nights sleep deprived. Wednesday June 4: Welcome, seizure #3! May your future generations all perish in the dust. It looks the same as the previous two--great news!
Tuesday June 3: The best grad nite ever! 30+ of us all in David's room.
Friday May 30: The two seizures look the same on the EEG. A diagnosis of temporal lobe is still possible through these probes, if the next seizure gives a little better info.
Thursday May 29: SEIZURE number two. Diagnosis so far looks like David is still a candidate for therapeutic surgery. Ativan issue resolved.
Wednesday May 28: David is still happy and healthy and patiently waiting for more seizures.
Sunday: ONE SEIZURE; David in great spirits.
Friday: David caught himself scratching his head and agreed to have hand restraints overnight.
Thursday May 22: Finally a good night of sleep last night. Started tapering off two medicines a little bit to try to get him to be more prone to seizures.
Wednesday May 21: Excellent communication with David's doctor about how to taper his medicines off a bit to trigger seizures. Our boys have pitched in to help and adjust to all the disruption.
Tuesday May 20: Recovery is good.No bleeding in his brain.No more nausea.He came out of the CCU and is in a regular room.The pain is manageable with a little Vicodin now. An angel brought dinner. Thank you.
Monday 5/19: Surgery went well
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