Monday, December 5, 2011

A Month of Miracles

It has been a little over a month since Will's surgery, and Will still remains seizure free.  Developmentally, he is doing great.  We continue to witness miracles each and every day.

Will has been working very hard in all of his therapy sessions.  He is seeing a total of 6 different therapists for physical, occupational, and speech therapy.  Sometimes he gets a bit exhausted, but he really enjoys all the attention he gets during his sessions and all of his hard work is really paying off!  He has been signing for "more" when playing and eating.  His gross motor skills remain strong, and he is slowly gaining better fine motor control.  He is enjoying scribbling with crayons, and loves to play with the Magnadoodle.  His favorite game is hiding in the dining room curtains and playing "peek a boo".

Communication still remains very weak, and Will has a long road ahead of him before he will be able to talk, but his therapists are optimistic that someday speech will come.  Today, he had a HUGE breakthrough as he learned how to request things by pointing at the object he wants.  Kelly cried tears of joy to watch our little Buster, as this is one of the basic building blocks of communication that a month ago we weren't sure if he would ever be able to do.  Of course, he is already being a little stinker and pointing at things that he isn't supposed to have because he knows we are so proud of him for doing it that it is tough to tell him no.  Another thing he is doing is standing in front of our fireplace at home and saying "Ha, Ha" - clearly trying to tell us that it is hot.  A few days ago, Kelly left the room and Will started to cry, saying "MaMaMaMaMa".  Not quite "Ma-Ma", but we'll take it. It was music to our ears.

People ask us questions about his surgery all the time, and the questions usually start out with "I know this is a silly question..." or "You probably don't want to talk about this, but...", so we thought it might be helpful to answer a few of the most common questions on here.  And, if you happen to see us and have more questions, ask away.  We really don't mind talking about it.

What happened to the space in his head where his temporal lobe used to be? Did they put something in there?
Nope, no prosthetic brain, no temporal lobe shaped piece of styrofoam. There is just a big empty space in his head now that is filled with fluid.

Does he have to wear a helmet?  How long will it take for his skull to heal?
No, he doesn't have to wear a helmet, but we do have to be very careful to make sure he doesn't fall down on his head.  The section of his skull that was removed was put back in using titanium screws, so it is intact, but it will take about 6 weeks for the bone to fuse back together, and a full 3 months until the skull will be completely healed.  The screws will remain in his head, and they won't show up on metal detectors so he won't have any problems going through airport security.

Are there any activities Will won't be able to do now that he had brain surgery?
Will won't be able to participate in contact sports like football, wrestling or hockey, although wrestling around on the living room floor and a game of touch football in the backyard will be fine.  His surgeon also said that he won't be able to ride rollercoasters.

How did the surgery impact his vision?
Although they did not have to sever his optic nerve, there are some branches of the optic nerve that runs through the temporal lobe which were removed.  As a result, Will lost the upper right quadrant of vision in both eyes, but because he is so young his body seems to have already adjusted for it and this should not have any effect on his future.  As long as his seizures are controlled, he will be able to drive a car.

What was with those fiducial markers they put on his head before the surgery?
During Will's surgery, the neurosurgeon used state of the art technology called frameless stereotactic imaging.  Will had an MRI the day before his surgery, and they placed fiducial markers on his head that looked like white lifesavers.  These showed up on the MRI, and they remained on his head during the surgery.  They were actually stuck on so good that they took the hair off with them when they were removed - he has bald spots where each of them were placed!  During surgery, they used a special positioning device that was actually screwed into his skull to keep his head completely motionless.  He has a tiny scar in the middle of his forehead and on the back of his head from this.  Now here's where it gets high tech:  Once his head was demobilized, the stereotactic imaging device matched up the image of Will's brain on the MRI the fiducial markers on his head, essentially projecting the image of the MRI onto the outside of his head.  A computer with the MRI image guided surgeons so that they were able to remove exactly the right section.

When will he have another EEG?  
Unless we see seizure activity, Will won't get another EEG until 6 months following his surgery.  During surgery, EEG leads were placed directly on his brain and these showed normal brain activity following the resection.

So, is he "cured" now?  Will his seizures come back?
Unfortunately, there are no guarantees, but we celebrate each and every seizure free day for the miracle that it is.  In order to be declared "seizure free", Will needs to go at least 2 years without a seizure.  He continues to take a low dose of Keppra as a maintenance medication in hopes of preventing a relapse.  Infantile spasms is a catastrophic form of epilepsy, meaning that the abnormal brain activity that characterizes IS can cause permanent damage to a developing brain.  We will only learn in time what damage, if any, was done to Will's brain as a result of 10 months of uncontrolled spasms.  For this, we can only pray, pray, pray.

Can he eat anything he wants to?  
Will is finally allowed to eat a normal diet.  We can't really blame him, but he really only seems to want to eat carbs right now, so he is eating a lot of Cheerios, pretzels and Goldfish crackers.  He needs to make up for lost time!

How is Jack doing with all of this?
Jack is doing awesome.  He is happy that his brother isn't having any more seizures, and when we pray together he says that this is what he is thankful for.  The two are interacting and genuinely enjoying each other.  Sure, there are still times where Will starts taking apart Jack's trainset as he plays with it, and there are times when Jack rips a toy out of Will's hands, but this is what brothers do!  We also see them play chase, play peekaboo, wrestle, laugh, and continue to interact rather than just coexist.  There were countless times when "medicated Will" really frustrated or hurt Jack, especially when he was on some of the nasty medications.  A hidden burden in all of this had been the lump in our throats as we would try to explain to Jack that his brother didn't mean to hurt him, it was because of the medicine that he was taking.  It is such a happy feeling for us to let the two of them have fun and just stand back, watch, and smile.