Sunday, November 20, 2011

Pressing Play

Things have been kind of crazy since we got home.  We are gradually trying to get life back to some kind of normalcy.  It took Will a while to realize that he was safe here, and no one was going to poke him or try to draw blood here at home.  But, each day he has cried a little bit less and played a little bit more to where now, 2 weeks later, we finally feel like his is able to relax and is getting back to life as a toddler.  We were actually able to go to church as a family this morning!

Since surgery, Will has been on a special steroid medication to keep his brain from swelling at the surgery site.  He is also still on Keppra to keep the seizures at bay, and Pepcid to combat the reflux caused by the steroids. Just 10 days after surgery he was off of all pain medication.  He is one tough little boy!

So far, Will has not had any seizures.  That is a miracle in and of itself!  He had a look on his face a few times shortly after we got home that made us nervous, however we think it might have been a side effect of the steroids.  We are thrilled to be living life without any seizures right now, and we couldn't ask for things to be going any better with him. We know the seizures could come back at any moment, but we are thanking God for every blissful day without them.

The capabilities of Will's brain essentially froze back in January when his Infantile Spasms started.  He was just beginning to learn to wave and clap back then, and those abilities disappeared once the spasms (seizures) began.  At that time, his mental abilities slowed to a crawl.  We tried and tried to get him to wave or clap again, figure out new things, focus on children's books and pictures, say any words or make sounds, but he would just look at us and smile.  That beautiful smile that managed to take away some of the sting of watching your child and knowing that he had a very long road ahead of him. It was like someone took his brain and just hit "pause". As parents, it was one of the most painful and terrifying things you could ever imagine.

Suddenly, he is now very focused and able to perform new tasks.  Most of them are very small things that only we would notice, like how he now goes the opposite direction around the kitchen table to catch Dan when they are playing chase.  Some of them are bigger things. He is waving consistently. He has just begun clapping again, and is very proud of himself for doing it.  He is making sounds on command:  Da, Ta, Pa, Sss, Eee.  He mimics the way we pat our dog Duke on the back.  He initiates playing with us.  All of these are things that he couldn't do 2 weeks ago.  At dinner, he began to imitate the sign for "more", something we have been trying in vain to teach him for over a year.  He seems like his development is picking up right where he left off back in January, as if the the surgeons took his brain and finally pressed "play".  We can't wait to see what he does tomorrow!  

Will has an incredible appetite right now.  One night this week he ate 1 1/2 full chicken breasts for dinner along with a lot of noodles, bread, and cookies.  The poor guy was food deprived for so long when he was on the Ketogenic diet that he is now making up for lost time.  Of course, the steroids have contributed to his voracious appetite as well.  The size of his belly and the way it sticks out almost defies gravity.  Believe it or not we really are trying to pace him and his eating habits!

Will's stitches were removed last week at the Clinic.  He knew the building instantly, and when the 2 nurses walked into the room he was immediately uncomfortable.  He has learned that he is ALWAYS the center of attention in a doctor's office, and he would prefer to be invisible.  Imagine every time you are taken to a room and the door closes, and all you know is that the people who just walked in are looking at you and you know they are going to hurt you.  It took 3 of us to hold him down, and another to remove the stitches.  After what felt like an eternity but was really only about 30 minutes, his stitches are now out and his incision is healing well.  It is still very visible and he still fusses with it from time to time, but eventually it will heal and his hair will grow out and hopefully cover most of it.  

This past week, Will had a physical therapy evaluation, and did very well.  We were both there, and that seemed to give him a level of comfort.  He played with the toys that they had, and threw a ball to Dan, which was a huge surprise.  The therapist was very surprised with his ability level, as she sees a lot of kids who have recently had brain surgery and said he was doing excellent.  He had speech therapy this week too, and for the next several week he has a full slate of physical, occupational and speech therapy.  Even though Will is doing well, he is still very delayed developmentally and has a lot of hard work ahead of him.

It is truly miraculous to watch Will learning new things each and every day.  To watch him, it seems unbelievable that barely over 2 weeks ago he had a large section of his brain removed.  He did not lose a single skill, his personality is exactly the same, and he is surprising us all the time with his amazing recovery.  Everyday is a little bit better than the day before.  


  1. I am so happy for you guys. He looks so cute and happy. Hope you all have a wonderful Thanksgiving. Love to you all. The Siglers

  2. YAY!!! These are all answered prayers, and we are THRILLED to hear that Will is doing so well! What a blessing, and a huge relief. This year has been such a roller coaster, and I'm so happy for you that just in time for the holidays Will is getting back to the little boy he was before IS showed up. We'll be praying for his continued recovery.

    Hugs to all of you from all of us,

  3. All of us at Geauga Vision have been praying for all of you, especially for Will's recovery. We praise God for the miracles so far! Thanks for taking the time to post so that we can share your news and know how Will and the rest of you are doing. We will continue to pray!