Our Man of Steel

Superman!

Wow, Will has grown since our last post!  Today, it has officially been 5 years from the date Will was diagnosed with infantile spasms, and even though it has been a long time since we have updated this blog, we felt that this is a day worthy of an update.  We are also celebrating an amazing milestone, as Will has now been medication free for an entire month!  He has been doing absolutely awesome in every way.  In September of 2015 we celebrated 3 wonderful years of seizure freedom, and began the very slow process of weaning him off of Keppra, the only remaining anti-epileptic medication that he was on, a process that went smoothly and we finished in early January.  We now enjoy a child who is completely un-medicated for the first time in 5 years. 

The thought of Will being medication free was both exhilarating and terrifying for us.  We had to choose between attempting to wean him off of medication, or keeping him on medication for life.  By definition, any anti-epileptic medication alters brain function, and while Keppra has been better than others for Will, it does carry with it a laundry list of side effects.  For Will, Keppra has caused bouts of rage, loss of appetite, and potential loss of bone density over time.  We know that there is a chance that Will could relapse, and we know that if he does, there is also a chance that it could be difficult to regain seizure control.  We have read countless studies and statistics, and while we know that the odds are in his favor, it is a scary thought to not have him on any medication to protect his brain from seizing again.  However, we felt that we owe our Buster Beans the chance of living a life without medication, and the side effects that go with it.

Jack (9), Will (6) and Cole (2)

Will is now 6 ½ years old, and he is in kindergarten!  He is attending the Julie Billiart School, an amazing place for kids with special needs, just like him.  It is about an hour's drive away from our house, and the logistics of getting him there and back haven’t been easy, but he is thriving! In his class, there are 11 kindergarteners and 2 teachers, both of whom are intervention specialists, and have chosen to spend their careers helping kids with special needs like Will.  Will receives occupational therapy and speech therapy at school, in addition to the therapy he receives outside of school.  At his school, Will isn’t “different” - he is one of the crowd.  He has been able to make friends and fit in with his peers in a way that we know wouldn’t be possible anywhere else, and he has been able to get the additional time and attention that he needs to enable him to learn.  

We don’t know what the future holds for Will, and there are times that can be very scary to think about as parents.  He still has significant cognitive delays and likely always will, but we prefer to focus on the positive.  What we do know is that Will continues to amaze us with his progress each and every day.  He can write all of his letters and numbers.  He can count to 100, is learning sight words, and is working on how to sound out the letters to read simple words.  He is FINALLY potty trained (yippee!), a life skill for which we are so grateful.  In the months since we began weaning his Keppra, his cognitive skills have come alive in ways we never thought possible.  His ability to reason through logical concepts on his own has really been amazing lately.

Will is a testament to the progress of modern medicine, the power of prayer, and a bit of unexplainable luck.  He suffered from intractable infantile spasms, a severe and catastrophic form of epilepsy that carries with it an almost certain risk of severe and profound mental disability.  He missed out on over 2 years of development, at a crucial time in his childhood.  He is missing 2/3 of the left side of his brain, and half of his vision.  And yet, to the casual observer, he runs, jumps, laughs and plays just like any other 6 year old.  We know so many other children with similar stories who have not had similar outcomes. We definitely haven't come full circle, but our Buster Beans has come a remarkably long way in the past 5 years. So, it is with great excitement, joy, and gratitude that we celebrate the miracle that is our son, and the odds that he works so hard to overcome each and every day.  

Chugging Along

Life is too short to stay clean!

Will has been chugging along, having the time of his life.  He is truly inspring to us, as he treats every day like it is a gift.  He wakes up with a big smile on his face and he's off to play with his toys, the dogs, or his brother.  He is so happy, alert, and full of fire all of the time.  We've always seen this in him, even through the hardest times of the worst medicines with their terrible side effects.  Looking back, it is apparent how much of his personality was so watered down by the non-stop seizures and the side effects of all of the medicines.  May God bless any parent who has had to go through this, as we are aware that there are plenty of cases that are so much worse than Will's ever was.  He is a constant reminder to us of how fortunate we are, and of all the people who helped us in so many ways to lift us up to where we are today.


Will is finishing up his first year of preschool, and he has made tremendous strides in his class.  We recently had his IEP (Individual Education Plan) meeting, and it was a great meeting.  He has some awesome teachers who raved about all of the things that he is now able to do and all of the progress that he has made.  The goals that we set for the next year were such a far cry from the goals we set at his first IEP meeting last year.

DQ and a yellow shirt - life is good!

He has certainly developed preferences, even TV shows, toys, treats, and colors. He loves to play with cars, watch Mickey Mouse Clubhouse, take trips to Dairy Queen, and his favorite color is yellow. 

To add to his list of milestones, Will is now able to skip!  It is really cute to watch.  He is also stringing words together into 6 or more word sentences, which is a miracle to see.  He knows his name and loves to call others by their name too.  He will repeat almost anything we say to him, although some of it is mumbled, it's so incredibly awesome to hear!

When he is unhappy, he definitely lets us know about it, by stringing together a bunch of words, some of which we can make out and others we cannot.  He sometimes sounds like an angry person yelling at us in some foreign language, not caring if we know what he's saying because he just has to get it out.  It's hard not to laugh at this.

Will still has plenty of things that he doesn't like to do, like eat food that we want him to eat, come inside from playing in the yard, share, or get haircuts (even if we bribe him with many lollipops).


The biggest challenge we are facing with Will right now is his rage when he gets angry.  He used to only occasionally hit or throw things when he got upset, but it has become more and more regular.  In a strange way, this is a good thing because it shows that he is aware of his own wants and needs enough to feel frustration when he doesn't get his way, something he could have never done before.  However, he is not far enough along cognitively that we can talk reasonably with him.  There is no saying "You can have the piece of candy you want right after you eat your dinner", as he is not able to understand "if-then" concepts in the way that a typical child would. We are hopeful that his bursts of rage are in large part a side effect of the current anti-seizure maintenance medication (Keppra) that we  need to keep him on for at least another four months.  After that, we might be able to decrease the drug or stop it altogether.  We really hope that we can find a way to channel his anger, as it will be a major problem when he gets bigger if we cannot.

We have lots of exciting things happening for our family this fall.  First, we are going to be having a baby, due in November!  We feel so grateful to have reached a feeling of normalcy in our lives that we were able to think about expanding our family.  Another exciting thing is that the boys have chosen to take a trip to Disney for Will's Make a Wish grant, and we will be going in September.  We really wanted to choose something that money alone could not buy, and that would be for no other purpose but to put a smile on our kids faces - this trip will definitely fit the bill!

A few more good things - Will hasn't had to set foot in a doctor's office in over 2 months, and...still no hint of seizures! 

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.

Wishes Come True

We have a lot of very amazing news to share.  We got a call this week that Will has been granted a WISH from the Make A Wish Foundation!  This is so exciting for us.  The mission of this wonderful organization is to provide strength, hope and JOY for children and their families who have dealt with difficult life threatening medical conditions.  They were very clear when they called that Jack will be included too.  This is a great opportunity for our family to do something where the whole point is just to put smiles on our kids faces.  Now, the tough part is deciding what to wish for! 

Of course, for us, as Will's parents, our wishes are already coming true.  Will is doing wonderfully.  He is happy, growing, developing, and still seizure free.  We have been keeping a log of Will's progress, and it is hard to even keep up with all the changes we are seeing in him.  We have spent so much time in the past worrying about and struggling with all the things Will could not do, we think it is time to make a "Will CAN" list.  Here goes...Will CAN:

Will playing with his cars

• Play with toys!  He never knew what to do with a matchbox car, and now he won't go anywhere without at least one of them in his hand.
• Will can say all of his numbers one through twenty.  Sometimes he says them in order, but he likes to skip around a bit.  We think it is downright adorable when he says "eleben".
• Will tells us "I love you Mommy" and "I love you Daddy" each night when we put him to bed.  He said it for the first time on New Year's Eve.  What a wonderful way to welcome in 2013!
• Speaking of New Year's, he started saying "Merry Christmas" and "Happy New Year" about a week after New Year's.  He still says these things to us all of the time.
• He will proclaim "Good Night!" and quickly hide his head under the covers of his bed.  He will then pop his head out and say "Good Morning!"
• Will knows how to say all of the days of the week.  Again, not always in order, but we don't care! 
• When he says goodbye to someone, he always ends it with "See you soon"
• He is doing great in school, and knows the names of all the students in his class and each of his teachers.
• Not only is Will saying words, he can string them together into sentences.  His first sentence came when he didn't like what we were having for dinner and he looked at us and said "I want chicken nuggets".
• He saw Jack yawn and repeated what Dan always says to him:  "Are you tired, Jack?"
• Will understands simple commands.  If we tell him to go get something like his coat or his shoes, or take his dirty diaper to the trash, he can do it!
• We are starting to see signs that we will be able to think about potty training sometime soon, something we once thought we might never be able to do.  Will said to Kelly "I need to go potty" last week, although it was already too late!
• Will is enjoying playing with toys and understands how to do it.  Christmas was so much fun to watch him open up new toys and show excitement!  This was the first time he actually wanted to open presents and was excited about what was inside.
• When it is time to take a nap, or do anything else he doesn't want to do, he says "I don't want to!"
• When we sneeze, Will loves saying "bob bless you" and he has begun fake burping just so he gets to say "excuse me".
• Will knows how to take off all of his clothes. Of course, then, he loves to streak through the house yelling "Naked!!!!"
• Will loves to run, jump, and even kick and throw balls.  He can ride a push bike (without pedals) around the house.  We went sledriding, and he kept saying "Again?"
• He knows how to turn lights on and off, and always says "Turn on light?"  He loves to move chairs to each of the light switches in the house and turn them all on, and he even likes to turn them back off when he leaves the room!
• He says "ouch" when he gets hurt.
• If he wants us to follow him, he says "Come on, (insert name here).  This way."
• He has memorized most of the words of his new favorite book, Goodnight Moon.  He completely mumbles it and has no idea what he is saying, but he remembers what words are associated with each picture and it is adorable.
• He loves to tell the dogs "Stop It!"
• He also loves to sit on the dogs like they are horses.
• He asks for his favorite snacks (goldfish crackers and pretzels) by name. If we don't get it for him right away, he gets a bowl out of the cupboard and gets some for himself.
• He understands that his name is Will, and responds when we call him.  
• He can identify most of his body parts.  He can point to objects in a book and say what they are.
• He can stack blocks up in a pile.
• He can identify the following Sesame Street characters by name:  Bert, Ernie, Grover, Oscar, Zoey, Big Bird, Cookie Monster, Abby, and of course, Elmo.

We could go on and on, although the list is getting a bit long!  The crazy thing is that he couldn't really do any of these things just 4 short months ago before his last surgery. It is difficult to even describe the changes we have seen in him in this short time, as it really doesn't even seem possible.

We have been so humbled and overwhelmed by the support, prayers, and positive energy we have received from so many people, near and far.  We are so thankful, because without it, we would never be where we are today. We continue to pray that Will will remain seizure free and that he will be able to keep on learning and developing.

Giving Thanks

This year, as we prepare to gather around the Thanksgiving table and attempt to count our many blessings, we cannot help but smile.  We have so very much to be thankful for.  So often, its seems that the things that deserve the most gratitude are the things that we often take for granted.  It is with grateful hearts that we are watching our son learn things that most take for granted - normal everyday things - but things that we once thought he might never be able to do.

Earlier this month, Will started pre-school.  In many ways, this was a dream come true for us.  We have prayed so hard that someday he would be able to do this.  He is attending an inclusion program, which means that his class is a mix of typical children and children with special needs.  So, with lumps in our throats and slight smiles on our faces, we walked across the parking lot to take Will to his first day of preschool.  This is the first time our little man has taken a step out into the world without us.  And we were all too aware at that moment that he is not just a normal kid going to preschool.  Our older son Jack walked into preschool the first day and literally never looked back.  Will didn't exactly do that, but he did pretty good.  He's a tough little guy who can withstand more than most people (and already has), and he went into that classroom with the same fight that makes him our little Buster Beans.

He has never experienced any form of classroom structure before and cognitively doesn't understand a lot of what goes on at school.  He is having a hard time following routines, and transitioning from one activity to another, especially when he was having a lot of fun with the first activity.  He has his crying moments, as expected.  Even though he is doing amazingly well, his cognitive age still lags far behind his chronological age, so there are of course things that he doesn't want to do, doesn't understand, or simply isn't ready for.  But he is adjusting, and quickly.  His teachers are excited to tell us all about the progress he makes each day when we pick him up.  Their enthusiasm is inspiring to us to keep pushing him to do more and to do better.

As Will adjusts to his new life in school, we are absolutely floored at the progress he is making.  His verbal abilities as well as his cognitive abilities are in high gear.  He now has more words than we can count, and he gains new ones every day.  Not only can he repeat words that we say almost whenever he wants to, he is learning to use words to communicate with us, and he is learning to understand things we say to him.  He is learning his colors, numbers, and animal sounds.  It is nothing short of a miracle to behold.  Last week, Dan told Will it was time to brush his teeth, and he immediately ran up the stairs to the bathroom and patiently waited for us to come up and help him.  When we tell Will it is time for dinner, he is the first one sitting at the table, waiting to be served.  When we tell him it is time to go outside, he goes and gets his shoes out and waits for help to put them on.  It is absolutely amazing to see.

November is Epilepsy Awareness month.  Astonishingly, Epilepsy takes the lives of more Americans each year than breast cancer - almost 50,000.  Over 3 million Americans suffer from Epilepsy, more than Multiple Sclerosis, Parkinson's, Cerebral Palsy, and Muscular Dystrophy combined.  Of children with Infantile Spasms, 95% will have severe mental retardation later in life, and as many as 15%  - more than 1 in 8 - will die before they reach age 25.  So yes...we have many things to be thankful for.  However, awareness and funding for the devastating effects of Epilepsy is ridiculously low.  Words cannot express how grateful we are for everyone that follows our blog.  We hope that Will's story can help to educate others and spread awareness about Epilepsy.

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!

A Miracle in Progress

We don't think this video requires any further explanation...

If you have trouble opening the video, here is a link to the video on YouTube:

http://www.youtube.com/watch?v=7Y_G668Av9M

Great Things

Happy guy!

Today, Sunday, October 7th, marks one month since the date of Will's brain surgery.  When we were in Detroit, prior to the surgery, Will's neurologist told us that he was very optimistic that this second brain surgery would be a tremendous benefit to Will.  Dr. C said that he thought we will see great things from Will after the surgery.

Of course, after Will's first brain surgery in November of 2011, we saw Will excel and do a lot of exciting things, but then we saw those gains gradually fade away.  In January of this year, we remember posting on this blog that Will had words, and we listed the words he could say.  Within a month beginning in February 2011, we watched Will slowly lose the gains that he had worked so hard to make, until he was no longer saying any words at all, and then we were crushed when he had a seizure.

It is because of our past experiences after his first surgery that we have been reluctant to post how Will is doing, as we are terrified that the improvements that we are seeing in him are temporary and might fade away again.  But we are too excited, and starting to feel confident that they are not temporary.  Simply put, we ARE seeing GREAT THINGS!  He is doing so many things so well, it is hard to control our excitement. Quickly after we got home from the hospital, he began to mimic singing his ABC's (see video below). Now, among other things, he is giving us high-fives and saying "All right!"

As simple as it sounds, Will did not know how to reach into a bag of chips or a bowl of cereal and grab a handful and take it out.  If we put a plate of food in front of him, he would either stare at it and not know what to do, or he would try to pick up all of it at once and put it all in his mouth.  Eating a cookie was impossible because he couldn't fit the whole thing in his mouth and the idea of breaking it up or taking a bite was something he couldn't comprehend.  The change in his eating alone since surgery has been astounding.  He is now for the first time using a fork to pick up his food and put it in his mouth, one piece at a time.  His self-sufficiency in eating is also allowing Kelly to actually eat her dinner before it gets cold!

Who needs physical therapy???

Aside from eating, Will's cognitive abilities have really grown by leaps and bounds.  He is figuring things out the way that you would expect a child to be able to do.  As he works through a problem, we can see his mind working.  He figures out how to match shapes, match colors, identify Elmo in a book, and so forth.  He now watches TV and he is engaged in it, rather than just staring blankly at the screen.  All of these are things that we've been trying to get him to do for 3 years.  Now, within 1 month of his surgery, he is doing it!

Physically, he is still adjusting to his loss of right-side peripheral vision, but it really isn't slowing him down at all.  He bumps into a few things each day because he doesn't see them coming, but he is getting better all the time.  He loves his trampoline, and is proving that he has his strength back when he is on this.  He is now running everywhere.  He has a renewed interest in all of his old toys, so we've been dragging a lot of big plastic toys up from the basement.

We are so thrilled, blessed, and thankful to be posting all of this good news.  But...we still need your prayers!  We have to take Will back to Detroit on October 22nd and 23rd for follow-up appointments and most importantly, for an EEG.  If the EEG is clean, we definitely have reason to celebrate.  If it is not clean, well...we're not even going to think about that right now.  Until then, enjoy this video!  Thank you all for your prayers and support!!!

Recovery Continues

Getting some fresh air

Since we have been home, Will has progressed very well.  He is no longer taking any pain medication, and has resumed a lot of his normal activities.  He is eating like a horse, and over-indulging in his favorite snacks, Goldfish crackers, Golden Grahams, and Cheez-Its snack mix.  To be perfectly honest, we are having a hard time telling Will no when it comes to food.  Actually, we are having a hard time telling him no when it comes to just about anything.  We are just too overjoyed to see our happy little Buster Beans enjoying life again.

One look at Will's incision line and crazy haircut and it is clear why you will never see a neurosurgeon moonlighting as a barber, although Will's reverse mohawk is slowly growing into a nice stubble.  Earlier this week we took Will to his pediatrician who was a great sport and removed all of his stitches.  We aren't sure how many there were, but suffice to say that there were a lot.  It took 5 of us and about 1/2 an hour to get them all out, but it is done.  He is still sporting the skull cap when he goes outside.

He had his first post-surgery session of occupational therapy, as well as a physical therapy assessment.  He did very well with both, and was even jumping on a miniature trampoline at the physical therapist's request, and he loved it.  His excitement and smile was so charming that it brought her to tears.

The front of Will's "Reverse Mohawk"

Will's strength is continuously improving.  Since the surgery, he is clearly left side dominant, preferring to throw with his left hand, eat with his left hand, and so forth.  However, the really good news is that he is still using his right side, and threw a ball to Dan with his right hand today while holding a book in his left hand.  This indicates to us that he is able to integrate both sides of his brain for normal physical functions which is a very good thing!

The back of Will's incision

The most difficult thing that we are seeing him deal with and adjust to is his vision loss on the right side. The visual cortex on the left side of his brain was removed during surgery (as we were told to expect) and he has lost the right half of his vision in both of his eyes.  The presence of an obstacle to his right is difficult for him to deal with.  He tends to bump into things if he walks to the right. We are told that in time all kids compensate for this by quickly scanning toward the blind side every few seconds.

The most amazing thing that we have seen him do is feed himself his entire dinner using a fork.  This may sound pretty simple, but we have never been able to get Will to use silverware on his own and it is something we have worked on repeatedly for over 2 years.  Also, we have not been able to simply put a full plate of food in front of him, as he can't figure out what to do with it, or how to take one piece in his hand and feed himself.  He just stares at it and looks at us, even when it is something he wants to eat.  So, we have always had to put one piece in front of him at a time, and let him pick it up and eat it, then put another piece in front of him, and so on.  Putting an entire plate of food in front of him and watching him eat it, on his own, using a fork is something that just doesn't happen, so to see him make this adjustment so quickly after surgery was very encouraging to us and simply awesome to see.

Walking

Happy to see the dogs

We have a correction to make to our last post.  Will is now unable ABLE to walk on his own! We were told that it would likely take time, hard work and physical therapy to enable Will to walk again, but it is now less than 2 days since we got home and Will is already walking around.  He is just a bit unsteady, but he is doing it and we are hopeful it won't be long before he is back to being able to run and play just like before the surgery.   Another good thing is that his appetite is back and his nausea seems to have passed.  Will is eating so much that we are having to feed him snacks in the middle of the night.  We know that he still has a lot of recovery to do, but he is enjoying being home with our dogs and his big brother Jack.

Home

So happy to see Jack again!

We made it home today, and we are so happy to be here!  It was wonderful to get to see Jack again, and for Will to be able to rest and relax without fear of needles and tests.

Will is still battling nausea and having trouble keeping food down, but we hope that this will improve soon.  He is very weak, and we were sad to see once we got home that for now, Will is not able to walk on his own.  His legs just sort of buckle underneath him.  It is very apparent that he still has the ability to do so, but it is going to take some time for him to regain enough strength to bear his own weight, especially on his right leg.  The doctors said that this is to be expected, but should be temporary and will improve as the swelling in his brain goes down.  For now, we are going to take things one day at a time, and just be thankful to be home and to have our entire family of four together once again.

Discharged!

Will and about 1/3 of the members of his team

We just got news that we are officially getting discharged today!  We are heading to a hotel for a night or two so he can continue to recuperate, but the poking and prodding is done.  Wooooo-hooooo!  This is very good news.

Still giving us a few grins

We have a lot of people to say goodbye to here, and more importantly, to say thank you for giving our son a chance at a better life.  Will has received fantastic care and there has been a lot of "brain power" that came together to treat Will over the past week and a half.  It is amazing to think about what these doctors do for children on a day to day basis, and the number of families they have helped.

Expect to be Amazed

Tuesday started off similar to most other days, with Will somewhat miserable and vomiting up the food that we had worked so hard to get him to eat.  It was frustrating, to say the least.

Happy Smiles!

Doctors came in the early afternoon to remove his 2nd drain tube, which was draining fluid from the cavity created by the tissue removed in Will's brain.  It took a little time, but Will really seemed to perk up from there.  He continued to drink, and by early evening, ate an actual meal.  This was awesome to see!  Later, we got the best surprise of all, Will smiled at us!  It is actually looking like discharge might be in our relatively near future.

Just before going to sleep Tuesday night, Will's IV blew out...again.  Poor Buster has had 7 IV's placed in 9 days, 2 arterial lines, and daily blood draws.  We were terrified that we would need to find another vein for a reinsertion of his IV, and Will just doesn't have many places left.  Thankfully, the doctors agreed that because he is eating and drinking so well we can switch his meds over to oral and there is no need to reinsert the IV unless something changes.  This means even more good news - one by one, all of his leads and tubes have been removed, and Will is now free and not connected to anything.

Since the tubes have been removed, we are finally able to hold Will without too much trouble, except Will only seems to be comfortable lying down, and gets rather upset if we try to sit him up or pick him up.  We aren't sure if this is simply anxiety because he doesn't trust us anymore as we have been pinning him down for procedure after procedure, or if he has a bit of a spinal headache which would be caused by the drainage of spinal fluid through his now removed drain tube.  It could even be a combination of the two. We will discuss this further with the team, but because of this and other concerns, depending on when we get discharged we are planning to take Dr. C's suggestion and stay in a hotel in Detroit for a day or two before we drive home.

Will's doctors are extremely pleased with the way the surgery went.  Dr. C told us that he thinks we should expect to be amazed with the progress Will might be able to make once he recovers, but we are amazed already...just seeing Will being Will.

Happy Birthday, Jack!

This blog has been primarily focused on Will and his journey, but we wanted to do a post about the world's best big brother, Jack.  Jack has a very big day this week - his 6th birthday - and we aren't going to be there.  We were hoping that those of you following our blog might be able to wish Jack a very happy birthday.  He has been having a wonderful time with friends, cousins and grandparents while we are away, but we miss him terribly, and we can't wait to get home to see him again.

Jack started kindergarten last week. He did awesome, and was sure to remind us not to worry because he will always be our little boy.  We are so proud of what a wonderful, sensitive, crazy little boy he is growing up to be.  He has had to deal with a lot during this journey too, things a big brother shouldn't have to think about at his age, but he has remained resilient and strong no matter what comes our way.

We love you, Jack!  

Eat, Drink and Be Merry

Let us start by saying that today has definitely been better than yesterday, although we still have a long way to go.  We have been getting very nervous because Will is not eating anything and his intestines are, um...not moving.  Other than a few french fries Thursday night, Will is now on his 8th day without eating anything.  Every time we've tried to get him to eat he just pushes the food away.  We've been trying to sneak very small pieces of food into his mouth, such as a single Cheerio.  We have tried soft foods, crunchy foods, snack foods, favorite foods, smoothies and shakes, all to no avail.  Any time we have been successful in getting something in his mouth, he either spits it right back out, or if he chews it, he vomits almost immediately.  The neurosurgery team came in this morning and were followed by the hospital's dietician.  We were told that if Will doesn't eat by Tuesday (tomorrow) morning, they will need to put in a feeding tube.

Looking stylish but a bit too skinny

We knew had to get him off of the strong narcotic pain medicine if we stood any chance of getting him to eat.  This morning after talking to the neurosurgery team we decided to take a leap of faith and replace his Hycet (like Vicodin for kids) with plain old Tylenol at his scheduled pain medication time.  We also had the dietician send an order for him to have an Ensure protein shake, as he has been getting these at home as we tried to plump him up in preparation for this surgery and likes them.  There were some rough moments as the Tylenol was obviously not as strong as the previous painkiller, but we made it through.  Shockingly, Will is only 3 1/2 days out from major two stage brain surgery, and he is now only getting Tylenol and Motrin for pain.  Try to imagine an adult doing that.  We have said it before but will say it again, Will's strength is absolutely amazing.

By this evening, Will finished two of the protein shakes, and has really perked up to the point that he actually smiled a few tiny little smiles.  We went and got Will his favorite food - french fries from Wendy's in the hospital, and he was able to eat two bites before giving up and spitting out a third.  We are starting to wonder if some of the swelling in his brain is impacting his ability to chew on the right side, which would likely subside in a few days if that is the case.  We're not going to push it at this point.  Thankfully he was able to eat something, and we are hoping the protein shakes will be enough to avoid a feeding tube.

Will has pulled the gauze wrap off of his head so many times that even the nurses are getting sick of rewrapping it, and each time we do it is torture to him because we have to hold his head to do it.  We had a tense moment today when the tape from his gauze caught on the internal drain tube which is still inside his skull and it almost got yanked.  After Will's last surgery, we purchased a skull cap to be able to put on him when we went out in public to avoid the inevitable stares and uncomfortable questions from curious onlookers.  We showed it to the neurosurgery team, and they agreed to let him wear that instead of his head wrap.  He is a lot more comfortable, and now when he pulls it off, we can just slip it back on.  Plus, he looks a bit stylish now too.

It is looking like we might be here a day or two longer than initially anticipated to make sure that he can eat and drink on his own.  Our neurologist suggested that once Will stabilizes they might discharge us from the hospital and then we could just remain in Detroit at a hotel for a day or two rather than going home.  That way, we can get Will into a more comfortable environment while at the same time be sure he will tolerate the drive home and know that we won't have to try to rush back if something goes wrong.

Digging Deep

We have had a rough day here, filled with difficult to control pain, nausea and vomiting, IV blowouts, diaper leaks, drain tube removals, painful blood draws and Will pulling off his head wrap...twice.  We have really had to dig deep to find the courage to push on throughout the day today.  We are exhausted and drained, both physically and emotionally, but we are relieved to have another day behind us and have Will one day closer to recovery.  He is resting peacefully right now, and seems to be a bit better than earlier today.  Baby steps.

Will is slowly being weaned from the nausea-inducing, heavy-hitting narcotic painkillers.  Tomorrow will mark one week since he last ate a meal other than the few fries he had Thursday night.  We hope his nausea will soon subside and he can start to eat and regain his strength.  Regardless, his team is pleased with his progress and everything is slowly moving along as expected, although we will discuss this further with them during rounds tomorrow

On the way to Detroit - Can't wait to see that smile again!

We are so thankful that we are not alone in this.  Our families, both those here with us in Detroit and those helping with Jack at home, have never left our side throughout this ordeal.  The number of messages, posts, comments and emails from far and wide has been incredibly humbling, and has given us strength at times when we have desperately needed it.  Jack's school principal even created a "Will Slattery Prayer Zone" and the students prayed the rosary on a rotation throughout the day Friday, all for our little Buster.  A friend posted on Kelly's Facebook page a saying - God gives the hardest battles to his strongest soldiers.  Will, at age three and a whopping 26 pounds, is the strongest soldier we have known.  We are grateful he has been blessed with an entire army helping him fight this battle.

Rejoicing in the Moment

Will is now resting in ICU.  All of his vitals are good, and his color has returned to his cheeks.  He did have to receive one blood transfusion during the surgery and then during the night last night it was looking like he would need a second transfusion but at this point his blood levels are rebounding so well they have decided to let him recover on his own.  The IV's are pouring into him, so he's getting the sustenance he needs through that.  He has had some juice, but does not have any appetite yet and has a bit of an upset stomach.

Dry lips in recovery!

When signing our consent prior to the surgery, the doctors made sure that we understood there were serious concerns that Will could have weakness on the right side of his body, as the area they were removing was very close to the motor strip in his brain.  At the same time, they were optimistic that it would not be affected.  Thankfully, immediately after surgery and before any temporary swelling could happen, Will had full motion and plenty of strength, proving that the motor strip was not impacted by the surgery.  It actually took 4 of us to hold him down to keep him from pulling out his arterial line.  He was so strong immediately after the surgery that he actually bent one of the immobilizers they had placed on his arms to keep him pulling out IV's.  We are so happy to see him with a full range of motion, and also so determined and full of fight despite everything that has happened to him over the past week.

The doctors have been streaming in this morning, and the entire team is very impressed with what they are seeing.  His strength and recovery so far have been astounding.  The entire team seems very pleased with how the procedure went - there were no surprises and results were the best we could have hoped for.  They are very optimistic that he will now be able to learn to talk and progress forward with his development.

Will's field of vision is almost certainly completely gone on the right half of both of his eyes, and we can definitely tell when standing on that side of his crib that he has lost visual field.  He will have some adjustment to deal with over time, but nothing insurmountable.

As long as I have my Mom, I'm OK

Overall, we are exhausted, depleted, and a bit giddy with excitement and joy - but always with a measure of caution.  We were told in November that surgery was a success, only to have our elation come crashing back to the ground in an instant.  We are way too far along in this journey to think that can't happen again.  Regardless, given all our little Buster has been through, it feels really good to feel hope and optimism for our little boy, and right now...we are going to rejoice in this moment.

THE SPIKES ARE GONE!!!!

We just talked with a member of the surgical team.  The surgery is over, they are closing now.  They removed his entire left parietal and occipital lobes and a small portion of his temporal lobe that remained from the first surgery.  The amazing news is that testing ran after the surgery showed that the spikes are GONE!!!!

Surgery has Started

Update from the OR: Surgery has started.

Deja Vu

Just kissed Will goodbye, again. Praying extra hard right now.

Our Little Warrior

Precious Will

It has been a very long week and we still have a long way to go before this is over, but we are getting closer.  Surgery will be at 8:30 on Friday morning and is likely to last about 6 hours.

Yesterday was a big day in this process.  The doctors attempted to map Will's motor function by stimulating the electrodes in Will's brain one at a time and watching for movement.  Since Tuesday, they have been gathering data to determine what area of his brain needs to be removed.  However, they needed to identify exactly where Will's motor function is located to know that the resection will not eliminate his ability to walk or move his right side.

Once all of the data was gathered, we had a meeting with Will's team of doctors in the afternoon.  Listening to them talk about their plan for the surgery, it is evident that they are very optimistic about the chances of a brighter future for Will.  As awful as the grid placement has been, the data that it has provided is remarkable.  We found out that Will has almost certainly been having daily seizures since November.  Since the grids were placed, he has had between ten and fifteen seizures per day.  However, the seizures are coming from an area of his brain that is far enough removed from his motor cortex that there are absolutely no visible signs of the seizures.  This is actually a good thing, because it means that the doctors should be able to remove the abnormal tissue, without impacting his motor skills.  The seizures are coming from only one distinct area - the parietal and occipital lobes - and this is what the doctors will remove.  There is no abnormal activity coming from the remaining areas of his brain, which is a wonderful thing.

We are VERY comfortable with the surgical plan, and extremely confident in the team of doctors that will be collaborating for this surgery.  Without question, we have come to the right place.

Will is still continuing to be a little warrior.  There have been times when it takes three to four people just to hold him down.  On Thursday, he suddenly reached up and pulled the entire bandage right off of his head.  We gasped and jumped to stop him but it was too late.  In the end, none of wires were pulled and he was able to get rewrapped with a fresh, lighter wrap which made him much happier.

After our meeting with the doctors, they agreed to disconnect the wires from Will's head. He still has the wires coming out of his brain, but they are no longer connected to anything which means he can finally sit up. This has made him considerably less miserable than before.  He perked up a bit after that, and we have been able to see glimpses of our Will again.  He even ate a little, which was wonderful as he is going to need all the strength he can muster to get through his next surgery.  He finished it off with a few sips of a milkshake, which we all agreed is the best thing we could have given him before his next brain surgery.

We will continue to update throughout the next surgery.  We are so appreciative and humbled by the outpouring of support that we are receiving from places near and far.  Thank you to all who are continuing to pray for our little Buster Beans.

Will's Journey in Pictures

We thought it might be helpful to show some pictures of Will's journey with epilepsy so far.  However, the best explanation is demonstrated not by pictures of our adorable little Buster Beans, but pictures of EEG brain waves.  These are not pictures of Will's actual EEG's, but simply pictures of the typical patterns.

First, here is a picture of a normal EEG pattern, of a person without epilepsy.  This is the Holy Grail for a child with Infantile Spasms, and what Will's team here is Detroit is trying to achieve for Will.  As you can see, the lines are calm and organized.

Normal EEG

Next, here is a picture of an EEG for a child with Infantile Spasms.  This EEG was NOT taken during a seizure, this is what the EEG looks like all the time - the brain is in total chaos.  This is why Infantile Spasms is a catastrophic form of epilepsy.  The constant pattern of extremely abnormal and chaotic brain waves makes it virtually impossible for a child to learn and develop.  This is more or less what Will's EEG looked like for most of 2011, although it has not looked like this since his last surgery in November.  The fact that Will has been able to function as well as he has considering what was going on in his brain is a true miracle.

Infantile Spasms EEG with Hypsarrhythmia

Finally, here is a picture of an EEG showing focal spikes, which is what Will is having now.  As you can see, this is far more organized than the chaotic EEG of infantile spasms above, but still not as nice as clean as the normal EEG.  Will's spikes are actually even more focal than those shown in this picture, as they are only coming from one very distinct area of his brain, the left parietal and occipital region.  However, Will's spikes are coming rather frequently, and are fairly severe.  Some of the spikes are so severe that they are radiating out into the remainder of his brain, impacting development in the areas of his brain that we believe are healthy and normal.

EEG with Focal Spikes

Finally, we can't close a post about Will's journey in pictures without a real picture of our little Buster.  He is really struggling right now, but we must keep reminding ourselves that his pain is temporary and we can and will get through this.

One Miserable Little Guy

Only twenty four hours to go until the next surgery, and then Will will be on his way to recovery.  His doctors here are very optimistic that after this surgery his brain will resemble the NORMAL, clean EEG in the first picture.  Until then, we will just keep on praying for our little Buster Beans and trying to make him as comfortable as possible.

Halfway Point

We are 36 hours in, with 36 hours to go until surgery.  Will has been moved out of ICU and into the regular hospital wing.  He has eaten almost nothing, occasionally drinks a little juice, but is luckily on an IV so at least he is getting liquids.  He is very miserable, but still fights like crazy every time they try to get a blood pressure read on him, or touch him for any reason, which is pretty often.  He is still on  some pretty heavy hitting pain medications, along with antibiotics.  We are becoming concerned that in his weakened state he will have a difficult time with the 2nd surgery on Friday, unless he starts to eat and gains back some energy. It has been a very long day and we think it will continue like this through the night and tomorrow.

We think we are seeing a visible seizure in his eye blinking.  He is frequently squeezing his eyes shut, and it looks like it is an involuntary movement.  This is happening rapid fire in clusters over the course of several minutes, about once every three to five seconds.  It is also tracking with spiking that we are seeing on the EEG.  Of course, this has not been verified by any doctors, it is just what we are seeing and it is something that we've never seen him do before.  He is now 48 hours without any anti-seizure medication, and he is tired and weak, so it is very possible that what we are seeing are seizures.

Tomorrow afternoon we will meet with the neurology group and will discuss their findings and their plan for Friday's surgery.  We are very curious and anxious to see what they say.  For right now we have to focus on keeping Will under control until Friday.

One Down, One to Go

Ouch!

One surgery down, one more to go.  This has been a very long day, and by the way our little fighter is acting, we know that we are also in for a very long night.  Luckily we have family here to help us and we also have the seemingly endless support of our incredible network of family and friends.

They ended up having to put arm immobilizers on Will to keep him from pulling out any of his lines.  He wakes extremely agitated and is having bouts of nausea and vomiting.  The good news is the grids are placed, and we are one step closer to recovery.  Everything is going according to plan, including what has been discovered on the EEG grid placement.

The team placed about 100 electrodes on his brain, and so far, the data seems to be showing exactly what we expected, although he is having even more spiking and abnormal activity than the doctors expected - about 1 spike per second.  Will's neurologist described what he saw on the EEG in Will's left parietal and occipital lobes as "a whole lot of nastiness."  This is confirmation to us that we are doing the right thing, and we have come to the right place.  By the end of Thursday they will know how much of his brain they want to remove, and we fully expect that the surgery will go forward on Friday.

We spent last night at the Ronald McDonald House, and are doing our best to get some rest there when we can in the coming days. It really is an amazing organization whose mission is to help families that are traveling out of town for their child's medical treatment. We were very happy and privileged to be there. Last night, Will was his usual self - all smiles and giggles, which helped our spirits.  It was hard to be upset when looking at that happy little face.  Nonetheless, there was a pit in our stomachs as we mustered big smiles while he was being a goofball in our room, knowing what awaited him first thing in this morning.

Grids are Placed!

The grid surgery is complete.  They placed 100 electrodes on the left side of Will's brain.  So far, it is showing constant spiking, even a bit worse than anticipated.  The doctors believe that Will has been having undetected seizures all along.  It will be about 2 more hours before we get to see Will, we will update later this evening.

Surgery Started

Just got an update that the surgery has begun and Will is doing well.

Starting Phase 1

We just kissed Will goodbye. They will spend about an hour prepping and the surgery will begin around 10:00 am.

Hope for a Brighter Future

Will hanging out in D-town

Will's big day is quickly approaching.  In a week and half, we will be traveling to Detroit to begin the two stage brain surgery that we hope will eliminate the remaining abnormal electrical activity in his brain and help our son to develop. 

Earlier this week we were back in Detroit for pre-surgical testing.  While we were sitting in the waiting room during Will’s MRI, we realized that this was the 10^th time that he has been sedated in the past 18 months.  We also marveled at how tough we have become since his first sedation when we cried like babies, although it never gets easy to watch your little boy get sedated and wheeled away.

While in Detroit we met with Will’s neurosurgeon to review the plan for the upcoming surgery, as it is a complicated one.  Our neurologist was emphatic that it is bad enough we are having to do a second brain surgery, we want to make sure that we don’t have to do a third.  To accomplish this, Will is actually going to have two separate brain surgeries, the first to place a grid on his brain, and the second to remove additional brain matter. 

We will be driving out to Detroit on Monday, September 3^rd, and we will take Will off of all medication.  The first surgery will take place on Tuesday, September 4, and will take approximately 5 hours. The neurosurgeon will make a fairly large opening in his skull and place a grid of EEG leads directly on his brain.  Normally, when Will has an EEG they simply glue the leads to the outside of his head. By placing the grid directly on his brain, the doctors will hopefully be able to get very accurate data on exactly what is going on in his brain.

Once that surgery is over, they will close up his skull and we will wait for 3 days with wires coming out of Will’s head that will be directly connected to his brain.  He will not be sedated, and he will not be restrained. He will be in his crib or we will be permitted to hold him but that is as far as he will be allowed to go.  It will be our job to have one of us awake 24 hours a day to watch him and make sure that he doesn't hurt himself, or (God forbid) pull out the grid. 

During this 3 day time period, the doctors will be able to create a map of Will’s brain function.  When he moves his left arm, they will know where in his brain that movement originated, and so on.  They will also be able to determine with much greater accuracy exactly where in his brain the abnormal discharges are coming from, and exactly what brain matter needs to be removed.

Finally, on Friday, September 7, the surgical team will take what they have learned from the brain mapping and they will operate to remove all of the remaining bad brain tissue. This surgery will take approximately 6 hours.  We will not know for sure what portion of the brain they will be removing until the day before this surgery, after the doctors have compiled the data obtained from the grid placement.

Enjoying time at the beach

As scary as it sounds, we know that the grid placement is a very important part of this surgery.  We have been told that we will most likely be removing the left parietal and occipital lobes, which are located directly adjacent to the temporal lobe that was removed in November.  We considered removing the left parietal and occipital lobes during his first surgery, but none of the many doctors we saw could say whether there was actually something wrong with those lobes or not.  The grid placement will answer that question for us.

We are very nervous about this surgery because it will be far more extensive than the last surgery in November, when doctors removed Will’s left temporal lobe, or approximately 11% of his brain.  We anticipate that they will be removing Will’s left parietal and occipital lobes, which comprise approximately 20% of his brain.  When all is said and done, he will be missing roughly 1/3 of his brain, a very scary thought. As part of this, they will have to sever Will’s optic nerve, meaning that he will lose 50% of his field of vision in both eyes, and as a result he will have absolutely no peripheral vision on his right side. There are also a LOT of other risks, that we hope we never have to describe in this blog.

However, we are very hopeful that at the end of this surgery, Will is going to have a complete absence of irregular electrical activity in his brain.  Despite the horrid risk of side effects in doing this, we are very optimistic that the overall net effect will be tremendously positive.  Because of his young age, his brain still has considerable plasticity, or ability to adapt to changes, which means that aside from the vision deficits, the remaining areas of his brain will likely be able to relocate all function lost from the tissue removed.

People are asking us what they can do to help.  The truth is that now more than ever, we need prayers for Will.  We are down to our last option for hope for a brighter future for our son.  If this works, we will have our miracle.  If it does not, we will not really have any other options left.

Despite all of the risks, we need to remind ourselves that we are actually in a very enviable position.  We know a lot of parents of children with Infantile Spasms that would give anything to eliminate their child’s seizures or to be a candidate for surgery. The fact that we have been given another chance, and a reason to imagine good things for our child’s future is not something that everyone gets.  So even though we are face to face with the horror of a second brain surgery, we are trying to keep a proper perspective and remember that this is actually a very good thing.  

Please keep the prayers coming!!!