Saturday, February 19, 2011

And so it began...

Welcome to Will's blog.  We decided to create this site because it has been getting difficult to send out emails to the many family and friends that want updates on Will's condition.  He is a very loved little boy!

In early January, 2011, Will, who was almost 18 months old, began having strange episodes where he would nod his head forward every 10 seconds or so for a few minutes at a time.  We talked with our pediatrician who asked if it could be a type of seizure.  Seizure?, I thought.  It couldn't be.  This was only a slight nodding of the head, and he was completely conscious the entire time.

We began a series of tests, including an MRI and various blood and urine tests, all of which showed nothing out of the ordinary.  Still, the episodes continued, lasting anywhere from 2-10 minutes, typically around 5 per day.

Buster at his EEG
On February 9, we met with the head of Pediatric Neurology at the Clinic, following an EEG.  We showed her a home video of one of Will's episodes, and she instantly recognized it as Infantile Spasms, a rare type of pediatric epilepsy.  They were indeed a type of seizure, one that can have very devastating results for a child's development.

With the results of the EEG to direct her, she re-reviewed Will's MRI and found a subtle malformation in the left temporoccipital lobe of his brain.   We were told that Will's condition was very serious, and the likelihood of him needing brain surgery in the near future is "significant".  This explained why he still wasn't talking yet, and is what they believe to be the cause of his seizures.

As we sat in the doctor's office listening to his diagnosis, we were overcome with the shock of what she was saying.  We couldn't find the words to ask questions or even speak, our minds went blank. And so began our journey with our precious little boy to battle this disease...


  1. Kelly, Dan, Buster (Will), and Jack,
    My thoughts and prayers are with all of you!! Will is so fortunate to have two loving strong parents providing love and lots of care.

    This sounds like an unbelievably difficult time, it breaks my heart to even think about it. Over the years our family has had many obstacles, but I believe with prayer and faith Will can make it through.

    I hope you know that if you need ANYTHING, please let us know, we love all of you,
    Peg, Bob and Cy

  2. Kelly, Dan, Will and Jack -

    We just wanted you to know that we will be adding your sweet baby Will to our prayers! We are members of St. Helen, and heard of Will's story through an email from Deacon Will. Our hearts go out to you! The pain of not knowing and not being able to help your child is unbearable! Our daughter was diagnosed at the Cleveland Clinic almost 11 years ago with Right-sided hemiplegia, a form of cerebral palsy. We were told that she had a stroke sometime before, during or after birth. The stroke destroyed half of her brain. The prognosis at that time was unknown, and all they could tell us was to start therapies right away. We didn't know if she'd ever talk, walk, run, etc. Well, she is doing very well - we have some daily challenges, but it can always be worse. She is in the 5th grade now at Burton Elementary, and has surpassed all the goals that her therapists have set for her! Thank the Lord! The unknown is a very scary place - trust in God to lead you through it! God bless all of you! Michelle and Bret Meadows

  3. Kelly,Dan.Jack and Will,
    We just heard about your precious Will from Jack and Em.He is such an amazing beautiful little boy. Please know you are all in our thoughts and prayers..we know you must be so scared and we cant even begin to understand, but we are thinking of you and praying for a miracle,from our loving God..Hugs to all of you!!!

  4. Kelly & Dan,

    My prayers, positive thoughts, and good wishes are with you and your adorable Will. Please let me know if you need a babysitter for Jack or any kind of help to make your days easier.

    Take care.

    Denise Joseph