Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly


on June 29, 2012

Today is the last day of Joscelyn’s Blood Drive. Our deepest thanks go to everyone who donated, those who tried to donate but couldn’t and those who shared the blood drive info with others! The hospital told us it would be wise to reserve two units of blood  for Joscelyn’s upcoming hemispherectomy surgery and at last count, we have over 25! Many of you shared with me that Joss was already quite “famous” at the various Florida’s Blood Center locations you visited. We are comforted (and somewhat astounded!) to know that SO many people are praying for her and rooting for her as she begins the fight of her life!

Several of you have asked, “What happens next?”

The answer is testing.

Lots and lots of testing.

On Monday, July 2nd, Joscelyn will check into the Epilepsy Center for Kids at the Walt Disney World Pavilion at Florida Hospital for undergo extensive pre-surgery evaluation.  A child is normally referred to the Epilepsy Center for Kids’ Surgical Program when their seizures have been proven to be “intractable”, meaning that they do not respond to anti-seizure medications. This has been the case with Joscelyn. Her current anti-seizure medication will keep her seizures at bay for several days but then a breakthrough seizure like this will happen:

In Joscelyn’s case, she typically has “cluster seizures” meaning that she’ll have a seizure like this, and then another, and then another, over and over again in quick succession. Wednesday night, she just kept seizing and seizing until finally, I didn’t know what else to do and took her to the ER. We know that these epileptic seizures are the result of hemimegalencephaly (HME), a rare, severe congenital malformation of the brain. In Joscelyn’s case, the left side of her brain is damaged. Without treatment, the seizures that are being generated from the damaged side of her brain will greatly reduce the quality (and possibly duration) of her life and are likely leave her permanently disabled.

Since medication hasn’t proved helpful in eliminating her seizures, her doctors at the Epilepsy Center for Kids are recommending that she undergo a hemispherectomy and have at least the majority, if not the entire, damaged left side of her brain surgically removed and/or disconnected from the good right half. Not only should this stop (or at least greatly reduce) the number of seizures she’s having but it will also prevent the seizure activity originating from the left side of her brain to negatively impact the healthy right side of her brain. Once the left side is removed, the right side of her brain is eventually expected to take over the functions and responsibilities of the missing left side. (i.e. Motor, language, etc.)

It goes without saying that no one wants to rush into a procedure like this. Hemispherectomy is widely considered to be the most invasive surgical technique in use today. Before her doctors can consider operating, they want to be absolutely sure that the right side of her brain is undamaged and up to the task of fully compensating for the malformed left hemisphere once it has been removed.

So, beginning Monday, Joscelyn will undergo all or some of the following tests (plus possibly others): 

1) Video EEG recording: A painless test that records the electrical activity associated with seizures. Her doctors want to capture at least 3 seizures on video.

2) Single Photon Emission Computed Tomography or (SPECT): Ictal/interictal SPECT scans can show areas of increased brain activity (seizures) related to increased blood flow to these area(s).  These scans show a bright white or red flare, highlighting area(s) responsible for causing seizures.

3) Positron Emission Tomography (PET) Scan: A test that measures how the body uses blood sugar (glucose) within brain cells.  Blood sugar acts like food for our brain.  This test will help her doctors see chemical changes taking place in the brain and highlight areas in which seizures may be active. 

If everything goes well, Joscelyn will have a hemispherectomy performed on July 5th or 6th.

Please join us in praying that the doctors don’t find anything that would cause them to have to delay the surgery for ANY reason! The stress and anxiety of the last month has been so great, we are eager to put the surgery behind us and move on with her rehabilitation.

Joss was feeling pretty well yesterday despite the ER trip on Wednesday evening. She played happily and was even willing to  model an adorable hat that had been sent to us by Allie Machin of Cozi Bear Boutique.

I’ve never had the privilege of meeting Allie but she sent a lovely note along with several hats explaining that she had heard about Joscelyn’s upcoming surgery from a friend. How thoughtful of her to reach out to us! Thanks, Allie!

You can see some of Allie’s adorable offerings here: Cozi Bear Boutique

Since Joss was so happy, I took the opportunity to go to dinner with my dear friend Debbie and indulge in a little “me” time. It will likely be my last opportunity to do so for a while since we’re looking at spending anywhere from 2-6 weeks in the hospital and will then be very busy with various outpatient therapy appointments.

Chocolate fondue just makes everything better, don’t you think? 😉

Meanwhile the boys already have their suitcases packed to stay at Grandma’s house while we’re at the hospital. They’re just a tad bit excited! And who can blame them? Who wouldn’t want to stay with a Grandma who spoils you like this?

That’s all for now.

I will be updating you from the hospital with news of how her testing is proceeding and the exact date of the surgery.

Thank you so much for continuing to pray for our family and especially for our precious little girl!






6 responses to “Testing

  1. Tammy says:

    Hoping all the tests allow for the surgery to go on as planned. But more than that praying for god to be with her surgeon during the surgery and to be with your family at this difficult time providing you with strength, comfort and love.

  2. Nancy Tucker says:

    Though I’ve only met you once face to face, through Debbie, I feel like I truly know you. I am praying for Joscelyn and your whole family. May God’s love, strength and comfort surround you all. I will be praying for the doctors and nurses as well. Prayers and love to you!

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