testing testing testing

tomorrow i go in for a two hour appointment with a neuropsychologist.  she has completed 4 lengthy testing sessions with Mikisa over the past month, and tomorrow i will hear the results.  the purpose of a neuropsychological evaluation is to help identify strengths and weaknesses with a child’s cognitive functioning. the goal of the testing is to help determine specific diagnoses that a child might have, but more importantly to help determine and develop appropriate accommodations and interventions that would make the child’s life easier.  i am fully expecting to come away from the appointment with at least 2 new diagnoses.  we already know Miki has ADHD, but she’s never been formally tested for it.  so that will be one.  and i know she has intellectual disability and possibly auditory processing disorder.  the new labels will all be added to her laundry list of diagnoses in her medical file.  it’s alphabet soup, and it’s kind of overwhelming!  i don’t care about labels, but it still makes me ache a little deep down, just knowing that she has so many challenges…

next tuesday, we will be taking Mikisa to the hospital for a 3-6 day VEEG (Video Electroencephalogram) and an MRI.  while we are there, the neurologist wants to take Mikisa off of her seizure medicines in the hopes of getting a more accurate picture of the havoc going on in her brain.  so I am trying not to think about what could happen once she is abruptly taken off those meds.  yikes!!!  but she will be closely monitored, and they have a great Epilepsy Monitoring Unit at CMC Concord.

our hope is that with this testing, we will get a more clear direction on prognosis and treatment for Mikisa.  the neurologist feels that the best possible option would be a functional hemispherectomy, which is essentially separating the two hemispheres of her brain and removing some of the damaged area (in her case, the temporal lobe).  because Mikisa had a massive stroke and doesn’t use most of the right side of her brain, there is [supposedly] less risk involved, and this surgery would hopefully decrease the amount of seizure activity on the healthy side of her brain.  right now, she is having nearly continual subclinical seizures at night, and frequent “spikes” throughout the day, which is making it difficult for her to function, and slowly causing damage to the left side of her brain.  she has what is considered intractable epilepsy, which means that it is not responding well to medications.  if the testing determines that at least 80% of the seizures are originating in the stroke area, it is possible that the surgery could provide drastic relief.

for those interested, here is a picture of Mikisa’s brain.  the black indicates the stroke area, where she had a brain bleed as a result of cerebral malaria.  when i look at this CT scan, which was taken in Kampala, is makes me both sick to my stomach (because of how much damage there is) and amazed at how much our girl has overcome! she really is a little walking talking miracle!!

ct scan

we would appreciate your prayers as we once again face a crossroads in this journey.  being in the hospital with Mikisa is not easy, especially because it is a reminder of all the scary stuff that we don’t like to think about.  we do not know if surgery will even be an option, but we are hopeful that something good will come from all this testing.  on the one hand, we would be excited if Mikisa is a candidate for the functional hemispherectomy.  this could give her a much better quality of life longterm, and would hopefully eradicate the seizures that have been plaguing her brain.  but of course, no one faces brain surgery without fear.  there are many question marks, and a lot of worry.  we know that God’s got this in His hands, so we are trusting Him with all of it.  it’s just hard to let go.

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4 responses to “testing testing testing

  1. Prayers go out to all of you! I did her first EEG at Presbyterian and still think of her often. She stole my heart that day with those big brown eyes. I appreciate the updates and wish y’all the best.

  2. Wow! To me this picture is amazing. It gives a visual of just how much God has done in and through her body despite everything! Your family is in our thoughts and prayers.

  3. If you have not had an opportunity to see the TED talk on “The surprising story of medical marijuana and pediatric epilepsy” I would highly recommend it. Here is the link: https://www.youtube.com/watch?v=ciQ4ErmhO7g It is certainly worth checking out before the surgery option. My understanding is that research universities in North and South Carolina are currently licensed to recommend CBD oil for pediatric patients with intractable epilepsy. Praying!

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