May 26, 2011

Prayer Request: Grant's EEG

I come to you again with a request for prayer. Grant will be admitted to the hospital Tuesday morning (May 31st) for a 24-hour video EEG (electroencephalogram). While we want and need to know for sure if Grant is having seizures, I am terrified of what the truth may be. A couple of Grant's actions (or lack thereof) are suspects of silent seizures (also known as absence seizures or petit mal seizures - click here for more information about them). Grant's actions could be quirks related his autistic-like disorder, Fragile X Syndrome, but I fear that they are not and we need to know for sure.

What I know about the testing process:
  • First, electrodes will be placed all around Grant's head.
  • Then (if I understand correctly), Grant will have intense, blinking lights placed in front of his face to cause a spike in brain activity. This is done to monitor how his brain reacts and/or to see if they can cause a seizure to take place at that moment.
  • Finally, Grant and I will "camp out" in a hospital room with a video camera taping all of his movements for the remainder of the 24-hour procedure. The electrodes will be on his head the whole time to continue tracking his brain activity. It will be up to me to keep Grant preoccupied and try to maintain his normal routine as much as possible. If I see any suspicious reactions from Grant I will press a button to mark a place in the recordings for further evaluation.
That is all I know and much of that came from a mother who has been through the process with her son.

Please pray for the following:
  • ... that we can find someone to watch Wesley at our house early Wednesday morning (very, very early) while Grant's test concludes at the hospital. Aaron cannot take off from school that day - it is the first day of test for students.
  • ... for my emotional well-being. Like I said, I'm pretty nervous about what will be discovered but I, of course, want to help Grant as much as possible.
  • ... that the procedure will be successful. I would hate to go through this whole process and Grant not show any of his suspicious behaviors for the doctors to see. I want to come away from this confident that we have uncovered the truth.
  • ... that Grant is not having seizures. Approximately 20% of people with Fragile X Syndrome have epilepsy. I am hoping and praying that Grant is not one of them.
  • ... wisdom, patience, and peace for all involved.
  • ... for provisions for our needs that come with this hospitalization and test. God is the great provider!
  • ... for God to be gloried through this process!

Thank you for your love and support and prayers! I'll keep you posted. :)

I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them. Isaiah 42:16


Don't you be afraid, for I am with you. Don't be dismayed, for I am your God. I will strengthen you. Yes, I will help you. Yes, I will uphold you with the right hand of my righteousness. Isaiah 41:10

{Want to learn more about what happened that day? Read Follow up: Grant's EEG and Update: Grant's EEG Results}
My sweet, sweet Grant. A gift from above.

Photo by Elizabeth Marx
Almond Leaf Studios

3 comments:

  1. Sending prayers your way and answers from his caretakers. When do you think Grant has these silent seizures?

    ReplyDelete
  2. Lord, we thank You first and foremost for the sweet gift of Grant. That smile you gave him could light a thousand dark nights! Thank you that you go before Karen and Grant to make a way for them that day in the hospital. Please cover the day with peace and precious memories of "mommy and Grant time." You said to ask boldly before Your throne of grace... and so we ask that Grant not be in the 20%. Clear his body of any seizures from this day forward. We ask that a sitter for Wesley is found too. Thank you for giving Grant such amazing parents... pour out Your hope and provision on their household. We love You Lord. In Jesus' Name we pray, Amen.

    ReplyDelete
  3. Hi Karen,
    I found out about your blog through Bill and Dorie's newsletter this week. We went to church with them in HB, CA so I knew Aaron, Kyle and Lydia when they were much younger :)
    My mother's heart goes out to you and the pain you are going through. While I do not have a child with special needs, I have a special ed. background so I am very interested in your journey.
    I enjoy reading your blog very much. You have a gift in writing. You express yourself honestly and transparently. And to the glory of God!
    Our family will be praying for you and especially on Tuesday.
    Love,
    Jan

    ReplyDelete

May 26, 2011

Prayer Request: Grant's EEG

I come to you again with a request for prayer. Grant will be admitted to the hospital Tuesday morning (May 31st) for a 24-hour video EEG (electroencephalogram). While we want and need to know for sure if Grant is having seizures, I am terrified of what the truth may be. A couple of Grant's actions (or lack thereof) are suspects of silent seizures (also known as absence seizures or petit mal seizures - click here for more information about them). Grant's actions could be quirks related his autistic-like disorder, Fragile X Syndrome, but I fear that they are not and we need to know for sure.

What I know about the testing process:
  • First, electrodes will be placed all around Grant's head.
  • Then (if I understand correctly), Grant will have intense, blinking lights placed in front of his face to cause a spike in brain activity. This is done to monitor how his brain reacts and/or to see if they can cause a seizure to take place at that moment.
  • Finally, Grant and I will "camp out" in a hospital room with a video camera taping all of his movements for the remainder of the 24-hour procedure. The electrodes will be on his head the whole time to continue tracking his brain activity. It will be up to me to keep Grant preoccupied and try to maintain his normal routine as much as possible. If I see any suspicious reactions from Grant I will press a button to mark a place in the recordings for further evaluation.
That is all I know and much of that came from a mother who has been through the process with her son.

Please pray for the following:
  • ... that we can find someone to watch Wesley at our house early Wednesday morning (very, very early) while Grant's test concludes at the hospital. Aaron cannot take off from school that day - it is the first day of test for students.
  • ... for my emotional well-being. Like I said, I'm pretty nervous about what will be discovered but I, of course, want to help Grant as much as possible.
  • ... that the procedure will be successful. I would hate to go through this whole process and Grant not show any of his suspicious behaviors for the doctors to see. I want to come away from this confident that we have uncovered the truth.
  • ... that Grant is not having seizures. Approximately 20% of people with Fragile X Syndrome have epilepsy. I am hoping and praying that Grant is not one of them.
  • ... wisdom, patience, and peace for all involved.
  • ... for provisions for our needs that come with this hospitalization and test. God is the great provider!
  • ... for God to be gloried through this process!

Thank you for your love and support and prayers! I'll keep you posted. :)

I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them. Isaiah 42:16


Don't you be afraid, for I am with you. Don't be dismayed, for I am your God. I will strengthen you. Yes, I will help you. Yes, I will uphold you with the right hand of my righteousness. Isaiah 41:10

{Want to learn more about what happened that day? Read Follow up: Grant's EEG and Update: Grant's EEG Results}
My sweet, sweet Grant. A gift from above.

Photo by Elizabeth Marx
Almond Leaf Studios


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3 comments:

  1. Sending prayers your way and answers from his caretakers. When do you think Grant has these silent seizures?

    ReplyDelete
  2. Lord, we thank You first and foremost for the sweet gift of Grant. That smile you gave him could light a thousand dark nights! Thank you that you go before Karen and Grant to make a way for them that day in the hospital. Please cover the day with peace and precious memories of "mommy and Grant time." You said to ask boldly before Your throne of grace... and so we ask that Grant not be in the 20%. Clear his body of any seizures from this day forward. We ask that a sitter for Wesley is found too. Thank you for giving Grant such amazing parents... pour out Your hope and provision on their household. We love You Lord. In Jesus' Name we pray, Amen.

    ReplyDelete
  3. Hi Karen,
    I found out about your blog through Bill and Dorie's newsletter this week. We went to church with them in HB, CA so I knew Aaron, Kyle and Lydia when they were much younger :)
    My mother's heart goes out to you and the pain you are going through. While I do not have a child with special needs, I have a special ed. background so I am very interested in your journey.
    I enjoy reading your blog very much. You have a gift in writing. You express yourself honestly and transparently. And to the glory of God!
    Our family will be praying for you and especially on Tuesday.
    Love,
    Jan

    ReplyDelete