Wednesday, October 24, 2012

SEIZURES CONTINUE

I haven't written in three days, and unfortunately Jacob is in the same spot as he was on Sunday. It seems as if Jacob's regular seizure medications can't keep his seizures under control. Today, it didn't take more than an hour and a half after his heavy cocktail of seizure medications, and seizures were back in full force. It is a delicate balance between stopping seizures and making sure that Jacob doesn't get too drugged up.

I am pulling my brain out to understand what has changed. What have we changed in Jacob's routine? We know that the addition of amino acids to Jacob's formula two years ago put Jacob into uncontrolled seizures for months. When we stopped amino acids, the seizures mysteriously disappeared. Could it be a reaction to the flu shot? Could it be that Jacob is in pain? Could it be his last Pamidronate treatment? Could it be the last antibiotics he was on? And then there is that question that we don't really want to ask ourselves. Is Jacob's disease progressing? We know that is inevitable, but not now, not now when he has been doing so great for so long. Two very good years. We were just in the process of trying to understand how much Jacob actually understands. We had been really impressed with his progress in speech therapy this year, and his ability to answer questions in school. We wanted to move forward, not backwards.

And I am afraid of our appointment with Dr. C. next week. I am afraid that she is going to draw the conclusion that his disease have progressed. I am afraid that we might be running out of solutions. I am afraid, since I can't just dismiss Dr. C as "any doctor". I know she is so invested in Jacob, and whatever she tells us, it will always be with Jacob's best interest in mind.

In my last post, I wrote about living with seizures. We try. We try really hard to still go about our lives, but there are times during the day when I found myself simply staring at Jacob, and trying to decide if we need to medicate him or is he maybe getting out of his seizure on his own? Counting seconds and minutes. Frantically eating something as the minutes go by. Trying to reason with myself on what we should do next. Trying to talk Jacob out of a seizure. Trying to stay calm, and strong for Jacob.

And I am dreading another weekend with seizures. I always feel more alone during the weekend. We have no nurses and Dr. C. is off. The Emergency Room always feels closer during the weekends. The only place to go if things get completely out of control.

And then there is this thing called hope. Every morning I wake up hoping for a seizure-free day. I don't need anything else, just for Jacob to get a break from his seizures. I am hoping every single day that we can find that magic medication or answer to why Jacob is seizing like this.

I hope I can write about a seizure-free day next time!

Love,

Maria.






12 comments:

  1. You are in my thoughts so much...I know how tired you must be. I have hope with you...I'm hoping Jacob has a better day tomorrow. And the seizures stop. Hugs to you, and our Jacob!

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    1. Thanks, Deana! Still seizures, but a little improvement from earlier in the week. EEG scheduled for Monday!

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  2. On my way to bed and will be praying for Jacob to stop seizing. I can't even imagine how awful it is to watch him seize and not know why or when he might stop. I pray you all get a good nights sleep and tomorrow is a seizure free day. Hugs and hope, Linda.

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    1. Thanks, Linda and for your continuous support! I hope you all are doing well!

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  3. Maria, I wanted to let you know the pillar of strength I see in you. You share, educate, and dedicate your whole being to Jacob, your family and the Miracles For Mito gang. Please let us know of anything we can do for you! Hugs and prayers, Michelle S.

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    1. Thanks for your kind words, Michelle! Your support and knowing we are here for each other means everything!

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  4. Hope you can too. Big hugs to team J.

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    1. Thanks, Amanda! Not seizure-free, but at least a little bit better! We will see what the EEG has to tell us...

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  5. Holding you, Jacob and your family in my heart as always. Big hugs! Jill Fischer

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  6. Always in our thoughts!!! Can't wait to be back, so I can do something productive for you guys.

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    1. You're to sweet, Nadia! We miss you all!

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