one hemisphere

last week, we were in the hospital for 4.5 days of testing.  Mikisa had an MRI, SSEP, and vEEG.  it was emotionally and physically exhausting, but we left with a new understanding of what is going on in her brain, and new hope for a cure for her epilepsy.

IMG_20140812_092319 her epileptologist believes that our only option to really help Mikisa would be to have a functional hemispherectomy.  she said that everything else we try will be just another bandaid.  she feels that Mikisa is “the perfect surgical candidate” and that this surgery could potentially be the cure we are looking for.  while this news is actually what we had been hoping for, it still felt like a sucker punch to the gut.  and now, the decision is ours as Mikisa’s parents…which feels extremely weighty.  our epileptologist said that this surgery could drastically change Mikisa’s life, and that it would give her a chance to develop and learn.  the goal of the surgery would be to stop Mikisa’s seizures from progressing and further damaging her good hemisphere.

IMG_20140812_203154here is a description of a functional hemispherectomy from Web MD: “A functional hemispherectomy is a procedure in which portions of one hemisphere — which are  causing the seizures  — are removed, and the corpus callosum, which connects the two sides of the brain, is cut. This disconnects communication between the two hemispheres, preventing the spread of electrical  seizures from one side of the brain to the other.  As a result, the person usually has a marked reduction in seizures.”

right now, Mikisa has a lot of subclinical seizure activity, every 3-5 seconds during the day, and for hours at a time in her sleep.  after last week’s EEG, the neurologist said she is having frequent periods of continual “discharges” ranging from 30 minutes to 68 minutes.  yikes!!!  these seizures are causing Mikisa a lot of challenges in her cognitive development, her memory, her concentration span, her processing speed, her behaviors, and her ability to speak.  the prognosis right now is that eventually these subclinical seizures will progress into many daily “clinical” seizures and cause Mikisa to regress in her functioning.  the MRI showed that the left side of Mikisa’s brain looks healthy, and we want to do what we can to keep it that way, since the right side is essentially useless.  Mikisa is on anti-epileptic drugs right now, but they are not effectively controlling her epilepsy, leaving her extremely vulnerable to life-threatening seizures.  all of her seizures are originating in her affected hemisphere and then rapidly moving to her good side.  she had two clinical seizures (complex partial) while we were there, each lasting 15 minutes.

IMG_20140815_191822when i asked about the risks of the surgery, the epileptologist said that the surgery would be a lot less risky than what is going on in Mikisa’s brain right now.  that was heavy news to process. so we are researching this surgery and what the potential risks could be.  our understanding of it is that she is currently only using the left side of her brain, so the surgery shouldn’t affect her ability to walk (although it would take away any chance she had at moving her left hand).  it would also cause a field cut in her vision, but our opthamologist believes that she already has left-sided neglect, so she has learned to compensate.  there are other risks of course, the most scary one to me being hydrocephalus…but we still need to talk to the neurosurgeon about the likelihood of these risks and the success rate of the surgery, etc.  obviously we are taking our time with this decision, and will meet with the neurosurgeon in a few weeks to discuss our questions and concerns.  we will also find out more about the possible complications of the surgery, and hopefully that meeting will give us more clarity on what is best for Mikisa.  it is not an easy decision, and we are seeking other opinions from several neurologists who have been involved in Mikisa’s care in the past.

we are feeling a little overwhelmed by all of this and are so grateful for your thoughts and prayers as we continue to seek and find answers to help our little girl.  as a side note: we have many friends and acquaintances who have suggested various alternative treatments for Mikisa.  while we appreciate your concern, we are well aware of all the alternative treatment options and have thoroughly discussed them with most of our 8 neurologists.  they are all bandaids and are ineffective because she has such a large area of damage.  they might buy us some time, but the thing we have learned about this surgery is that the sooner it is done, the better the outcome.  so please refrain from suggesting alternatives at this time.

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19 responses to “one hemisphere

  1. Praying for your decision. God will give you the answers! You are such amazing parents! Falling before the throne with you!

  2. Love, prayers and support dear friends, let’s schedule time to get you all in the prayer room and cover your decisions in prayer and wisdom from the one who made her, loves her, and brought her to you…

  3. I’ve never met you all before, but I’ve been following your story for a couple years now. I live in Kenya working with a children’s home, I somehow heard of your story in Uganda along with Mandi Joy and Rachel I believe. But I’ve loved keeping up with you all and send prayers time to time. just wanted to share with you a video I recently saw of a beautiful story of a little girl with a hemispherectomy. (maybe you already saw it!) but here’s the link. Prayers for you all.

    http://m.youtube.com/watch?v=__soMOWKxJQ

    • Thanks for commending Jenni! I have been to Kenya, and I left a piece of my heart there…I have watched that video, and it’s absolutely incredible! Thanks for sharing:)

  4. As I have read this latest update I’m actually excited to know that you are considering this option! I read an article that was published in a newspaper (sorry, I don’t know which one nor when but it may have been The Buffalo News) quite a number of years ago where they did a complete removal of one hemisphere of a young child’s brain. They assumed that she would never be able to walk again, but she did!! She was actually quite functional! Apparently when the brain is young and still forming its neurological pathways, one side of the brain can compensate for the other, even when that other side of the brain is completely gone, at least it did in this case!!! I wish you every blessing as you consider this option. I know this is very difficult as you love your daughter so very much, but I know God will show you the right course of action!

    • we are less worried about walking, because she already uses only one side of her brain…thank you for sharing. it is amazing how Mikisa’s brain has already compensated for such a large stroke

  5. Love the pics. Mikisa has a lovely smile and beautiful eyes. Praying that, whatever decision you make, God will take away the fear, give rapid physical healing, and give this beautiful child a chance to learn and to enjoy His great gifts without the burden of these seizures.

  6. Just want to offer prayers. Also, my neighbor’s child had this same thing happen. Her brain was separated as you describe and some removed. Her story was written and presented at medical conferences around the world. They told the parents she would never walk but what they didn’t realize until they removed the damaged part of her brain was that the side of her brain that was not affected had already compensated for the majority of her activities. She is currently in private school doing well. You would never know by looking at her or talking to her that anything had ever been wrong.

    • thank you for your comment! it is definitely encouraging to hear of other children who have had successful outcomes with this surgery!

  7. Troy & Christina,

    You have my sincere thoughts and prayers in reaching a decision. This is probably the most difficult decision you will ever make. I hope for the best possible outcome. Please keep me informed on the choice you make…

    Bob Long

    • thank you Bob! your thoughts and prayers mean a lot to us. we will keep you posted on our thought process as we meet with the neurosurgeon and several other neurologists this month

  8. Thank you for Sharing. The entire Felton family is in our prayers and thoughts daily. I wish you guys the best and I’m sure god has his hand in this and the outcome will be great. Much Love, The Reese’s

  9. I too have been following your blog for awhile and have prayed for Miksia many times. I will keep her continually in my prayers…..I personally feel she will amaze us all in what she accomplishes in this life for the glory of God. She already has so amazed me at how far she has come!!! We are wanting top adopt from Africa and am not as afraid to accept a special needs child. See already she is changing those around her! God’s blessings on your family as you make this hard decision.

    • Thank you Debra! Praying for you as you consider adopting from Africa. May God give you discernment and direction on your journey!

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