Tuesday, March 12, 2013

Continuing Down the Path

We just arrived home after spending Sunday night, Monday and Tuesday (3/10-3/12) back in Detroit for Will's 6 month follow-up appointments.  It is so hard to believe that is has already been 6 months since his 2nd surgery, but at the same time we simply can't believe all that he has learned in such a short time.

Just like the 6 week follow ups, we were extremely nervous that the bad activity in his brain might have returned, although we were hopeful that this was not the case.  We felt that the tremendous progress we have seen in Will must be a testament to the good activity going on in his brain at this time.  Will helped calm our nerves a bit during the drive out, as he was sitting in his carseat calling out the colors of all of the cars that drove past.  "I see red, Mommy! I see blue, Daddy!"

Coming out of sedation after the MRI
Will had to go through the discomfort of an EEG and all of of the pinning him down and wiring up his head that goes with it.  He also had to have another MRI of his brain under sedation, which is never easy even after going through it many times.  As you can probably imagine, Buster Beans was not too thrilled about all of the testing, and it was a relief to have it behind us.  After all of the data was gathered, we met with Will's neurosurgeon (Dr. S) and then with his neurologist (Dr. C).

Will's doctors and nurses were all very satisfied and happy with what they saw.  The nurse even got tears in her eyes as Will showed off his jumping skills in the exam room.  Of course, the most important part is that the EEG showed ZERO signs of seizure activity or spiking - nothing but completely normal brain activity.  The first 6 months following surgery is one of the most critical periods for a relapse, and Will has made it through!   His MRI looked great as well, no abnormal fluid pockets, no swelling - just a big hunk of missing brain.  Even though we weren't surprised, it was a bit hard to look at the images showing a big gaping hole in our Buster Beans' head where brain would normally be.

We talked all about all of the things that Will is now able to do with Dr. C, and while he was impressed, he wasn't surprised.   He said that Will is a classic example of what you can accomplish when you remove "bad cortex".  We sat and talked with him for over 30 minutes, and in the world of pediatric epilepsy, to have a world-renowned neurologist give you half an hour of his time just to pick his brain is a tremendous treat.

As we drove home, we reflected on what a long and painful journey this has been, and although we have passed through periods of darkness and despair, we feel like we have finally made it through to the other side.  While we know that there are no guarantees, right now we are among the very few who are lucky enough to have the joy of watching their child recover from this awful and devastating disease.  Although we don't know exactly what the future holds, we are mindful that there was a time just 6 months ago when we worried that Will would never be able to say "Mommy" or "Daddy."  Now, not only do we hear those magical words all day long, we have hope that he will be able to live independently someday, and hopefully much more!

Will being silly with a napkin
A few weeks ago, we were able to do something that we have wanted to do for 2 years...enjoy a vacation for just the two of us.  Although we missed our boys (and even our dogs) tremendously, it was so wonderful to get away, and to know that Will is doing well enough that we could leave him with our family and not be too worried. When we returned, Will started telling us knock knock jokes.  Of course, his jokes don't make a whole lot of sense, but he laughs and laughs, quite entertained by himself.  He is developing quite the little sense of humor!

Will is still talking like a little parrot.  He repeats many of the things we say, to the point that we need to be a little bit careful.  He is piecing sentences together and forming his own thoughts, which is an awesome thing to witness, and hopefully it will continue.

Our next follow up appointment will be in September, at which time they will do another MRI and an overnight EEG in the hospital.  For now, our little miracle child will continue down the path that he has been redirected to travel, and we will continue to thank God for answered prayers.


  1. I found your blog through Jeannie Schnur. Your success story is an inspiration and gives me such joy to read about your precious and very adorable Will.
    Our son was diagnosed with infantile spasms and cortical dysplasia when we he was 19 months old. His development is behind, especially his speech. He is almost 3 years old now and has been seizure free for 8 months. We are warned that his seizures will most likely come back and that whatever damage his brain suffered is permanent.
    In the roller coaster of epilepsy I have so many days of fear of the what ifs, but hearing success stories helps me push past those days and realize that we will make it through regardless of what is thrown our way. Thank for sharing your story.

  2. I got some insight on your little Will from Leslie Smetana, and I wanted you both to know I had put y'all in my prayers from that day I learned of your story. As you both may know my daughter was born with a rare genetic disorder, Williams Syndrome, and I know first hand the roller coaster ride that choose to sit in that front cart for the love of our children and hit each curve, hill, and loop with all our hearts and strength god has empowered us with. I took time to learn about this infantile spasms and its very fascinating and overwhelming. It's apparent you are both amazing parents, and how blessed you are! May God keep blessing ya'll always.

    Christy (Canterbury ) Jackson