Friday, July 13, 2012

Not Settling for Good Enough

Will getting hooked up for his EEG
This week, we travelled to Detroit to meet with Dr. C, who is arguably the leading expert on the treatment of infantile spasms.  This is the same neurologist that we visited in April of 2011 for a second opinion prior to Will's first brain surgery.  We checked into the hospital on Wednesday morning (7/11) and Will was admitted for a 24 video EEG recording, followed by a PET scan the next day.  After this was completed, we had our meeting with Dr. C.

We went to Detroit hoping to hear that there was still hope for our son to get better than he is today. While we are happy with where he is compared to a year ago, we still have fears and concerns.  After his surgery, we watched him recover and begin to soar developmentally, and then starting in February we watched those gains gradually fade away.

Will enjoying vacation in Florida
By all accounts, Will is doing very well, especially when when compared to how things could have been if he would not have had his surgery in November.  He is amazingly happy, giggly and well, let's face it...downright adorable.  He runs, he jumps, and he loves to play.  He is learning, very tiny bits at a time.  However, if we compare Will to other children his age, he is still severely delayed.  Even though he will be 3 years old next week, he consistently tests at a 16-18 month level, scoring in the bottom 0.1% for his age.  The thought of potty training is not in the realm of possibility for the near future. Will cannot talk and understands very little while of what we say.  He is enrolled at a preschool for children with special needs - regular school is not an option.  In short, there are a lot of fears that we have about his future.  

Will's developmental delays are often hard for us to explain.  His physical abilities are right on track, he is extremely social, and he is tiny for his age.  Oh, and did we mention how cute he is?  To the casual observer, most would never guess that he is so severely delayed, and we don't really like to point it out.  But it is the reality of his life, and we simply aren't willing to settle for "good enough" if we have an option to do better. While we have accepted that he will not be typical, we feel it is our duty as his parents to help make him the best little Will that he can possibly be, and that is why we sought out another opinion from Dr. C.

Brothers sharing a drink

With these thoughts in mind, we listened to Dr. C tell us that he feels quite strongly that the Clinic did not remove enough brain material.  Will's PET scan is still very abnormal, and his EEG shows constant spikes coming from the left parietal and occipital lobes.  Dr. C recommended that Will have another brain surgery to remove what remains of the malformed material in Will's brain, which is what he believes is causing additional developmental delays.  He added that the first 3 years of life are the best opportunity for development so he would like to see us do this surgery as soon as possible.  He was extremely confident, and also extremely optimistic about the possibilities for Will's development if we do this surgery.

This confirmed suspicions that we have had for several months about the remaining abnormal brain activity coming from Will's left parietal and occipital lobes, right next to where his temporal lobe was removed.  Regardless, we were still shocked to hear Dr. C's recommendation.  As we walked out our minds were racing with emotions of anxiety, excitement, uncertainty, and fear.  But both of us agreed that proceeding to surgery is undoubtedly the right thing to do.

Will is scheduled for surgery to have the remaining bad brain tissue removed on September 7th in Detroit. This is going to be a two stage surgery.  First, they will place a grid of EEG leads directly on Will's brain.  Then, we will wait for 3 days with the grid in place to be sure that we know exactly what brain material needs to be removed before proceeding to surgery to remove the remaining abnormal tissue.  We hope and pray that this will be it, and our little Buster Beans will be able to resume the development that ground to a screeching halt when he was about 17 months old.


  1. Kelly & Dan,

    So wonderful to hear an update on your family. I'm sitting here gushing with love for a child I barely know...HE IS SOOOOOO CUTE! I LOVE the pic of Will and his brother sharing a drink! You both are amazing parents and God is honoring that! We will continue to pray for your family and especially for Will as he undergoes surgery in September.


    Tiffany & Justin Smetana

  2. Dan & Kelly,

    Our prayers are with you and Will.

    Tom & Marianne

  3. Hi Kelly,
    This is Barb (Ethan's Grammy) from the forum. I sent birthday wishes to Will on the forum, but I get the sense that you do not get on the forum any more. I just wanted to touch base and say I think of you so often, and precious little Will. I cannot believe he/you have to go through another surgery. I will pray fervently for wonderful success, and speedy recover.
    As Ethan continues to have daily clusters, I have to confess that there are times that we wish surgery was an option. I bet the waiting is hard now. Once you make that decision, I would imagine that you want to do it now. Hopefully, you and your family can enjoy the rest of the summer with hopeful hearts for September. Hey, I never did get pictures of your new puppy, and your family wedding! :-)
    Big hugs,

  4. Hi Kelly,

    I was sad to read that Will has to go thru surgery again (and you guys too!) but happy you at least have hope that this can really help Will and he can continue to learn again. You guys are in our prayers. We think of you often!

    ~Jeannie Schnur (Jackson's mommy)