On January 24 something very unexpected happened. For the past year or so Grace’s seizures have looked the same: light trigger, left hand comes up, body freezes, then the seizure releases after a few (or more) minutes. However, last Thursday morning while I was at work Grace had a “normal” seizure which then abruptly morphed into something we hadn’t seen before. Her whole body went limp and she struggled to breathe. Paramedics rushed her to the ER where, after several tests, doctors concluded that she had had some sort of rare but not-to-be-unexpected brain flare up. Monitors showed that although outwardly Grace looked like she was struggling to breathe, her brain was still receiving enough oxygen in between gasps. They told us we shouldn’t worry, and she was released later that day.
Last Saturday morning Grace had another of her “new” seizures, but having been reassured by doctors two days before, we kept her at home and she rested afterward. Later that night, however, another seizure came, and this time Grace looked like she was struggling for air even more than before. We called 911 for the second time in three days, and the paramedics once again brought her to the Kaiser Santa Teresa ER near our apartment. It was around 7pm.
Eventually doctors decided that Grace should be transferred for an inpatient EEG monitoring, but since Kaiser Redwood City was full, she was transferred to Stanford Medical Center instead. The ambulance didn’t come to get her until 2:30am, and between the ride over and getting checked in Grace only “slept” from 4-6am that night. By now she had had several more of the new kind of seizure.
The EEG ran throughout Sunday morning, during which time Grace agreed to have a seizure purposefully induced via a doctor shining a light in her eyes. By Sunday afternoon the doctors informed us that the EEG results were inconclusive, and they recommended further outpatient treatment at a Stanford center specializing in neurological disorders.
Grace went home that afternoon and has been at home this past week. We are doing our best to resume our normal daily routines while dealing with the seizures as they come. I have tried to share this update with you all as concisely as possible, with the understanding that as a whole this past week-and-a-half has been unexpected, scary, and tiring.
At this point we are waiting to finalize our referral process to the Stanford center, hoping for little or no exposure to light triggers so that Grace can at least rest and resume her daily routine as safely as possible. Thank you so much for your prayers for us, and we will keep you posted as we learn more! God is faithful and good through it all.
Prayers as always to you guys❤️❤️❤️❤️❤️❤️
Sent from Lisa’s iPhone
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This makes me sad for you and your families…..you must be tired…..Dear God…hold them….
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Grace and all the family are in our prayers. Praying for all the seizures to STOP and for comfort and peace to everyone of you.
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Oh my, I’m so sorry for the new seizures that take a toll on your body. This must be so hard and yet I see her smiling. I just wonder how much your body can take. We will continue to pray for you especially with these new seizures. Praying they don’t continue or that the doctors can come up with the reason and find something to relieve them. Praying for strength for both of you.
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I continue to keep you in my prayers. Stay strong.
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I’m praying for you everyday!
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I can only imagine how scary and exhausting this was for you all. We (Your CCOT Family) continue to pray for you both. We love you!
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Prayers and blessings for both of you.
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All I can think to say is that one day, you will be able to run into God’s light! All who know Jesus long for the day when we will have our new bodies. Meanwhile, YOUR clear and vibrant faith in God our Light illumines OUR hearts with hope. Bless you two precious warriors! Many prayers are coming from all of us!
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Tadi baru belajar Firman Tuhan, bahwa everything yang terjadi dalam hidup kita itu tidak terjadi dengan sia-sia dalam Tuhan. Keep strong. God is using you in special way in your situation for many people who read “walkingwithgraceweb.com.”
We are praying for you all.
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Praying.
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Semangat Ko Ivan dan keluarga, cuma Tuhan yang bisa memberikan sukacita dan pengharapan di tengah semua yang terjadi. Praying for you and family.
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I read your posts and I think, “Lord, have mercy on Ivan and Grace.” I know, of course, that he has already shown you his eternal mercy and one day you will be free from all of this pain. But I still can’t help but groan for you as you wait for that Day.
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We pray for you and your family . Ivan, we pray you are a warrior of strengh for Grace. We pray for rest, courage and hope for you all.
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