Tuesday, October 23, 2012

Hooray for Will!

Jack and his cousin made a special poster for Will
We spent the past 2 days in Detroit, for a follow up EEG and appointments with Will's neurosurgeon and neurologist.  We have been asking everyone to pray for this day, in hopes that the follow up EEG would come back clean and we could breathe a sigh of relief that the developmental gains we are seeing for Will are likely to remain. Will had a 2 hour EEG and meeting with his neurosurgeon yesterday, and we met with his neurologist, Dr. C, today.  With our hearts in our throats, we listened to Dr. C tell us that Will's EEG looked good, and showed absolutely NO SPIKING and NO SEIZURE ACTIVITY!!!  We have been crying happy tears ever since.

It was such a surreal feeling for us to hear this news.  We sat there and listened to Dr. C tell us what he saw on the EEG, answered his questions about how Will is doing, discussed our questions and concerns, and all along it felt like we were in a dream.  For almost 2 years we have lived and breathed a war - Will's war - on Infantile Spasms.  We've tried or considered every treatment available.  All of the appointments with countless doctors, blood draws, MRI's, PET scans, EEG's, Neuro-Psych evaluations, therapy sessions, the many awful drugs, months on the Ketogenic diet, the first surgery, and now the second surgery.  After living through all of these things, to FINALLY hear a doctor say "it looks good" was something that we hoped to hear, but when he actually said it, it took a while for his words to sink in.

We discussed Will's current abilities, and how they differ from his abilities before the surgery 6 weeks ago.  At that time, he was able to say only 5 words, and even then he would really only say them when prompted.  Now, he is able to say over 100 words - 6 weeks later!  He is even starting to string 2 words together. He is learning his animal sounds.  He knows his numbers 1-10.  Will's cognitive abilities and his language abilities have exploded, much to our delight.  We knew something good is going on in our little Buster Bean's brain, regardless of what the EEG showed.  Now, although there are never guarantees, we have good reason to believe that this will remain, and that Will is likely to continue to progress developmentally and do well into the future.  Hooray for Will!


  1. Oh my goodness this update gave me the chills!!! We are soo happy for Will and for your family to have such fantastic news!! Continued prayers from our family to yours :)
    ~The Schnur's from VA

  2. Oh my gosh, I have been praying and thinking good thoughts for Will and your family for awhile. So very happy to hear this good news!!!!!!!!! You guys are remarkable!!! May God give you the spirit to carry on and enjoy both your little boys without having to feel something over your heads. I will continue to keep you people in my prayers. Give the guys a big hug for me. It is truly a miracle. Stay together always.

  3. Amazing AMAZING! SO HAPPY FOR ALL OF YOU! Wishes come true! :) The Ondrlas