Wednesday, May 29, 2013

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! 

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.

Saturday, January 19, 2013

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.