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! 


  1. What an awesome praise report! I'm so happy for your family!! Way to go Will!!

  2. Praise God for His continued work in Will's life and the rest of your family's! We are so excited to hear of another blessing entering your lives in November! Children are truly a gift from the Lord. Blessings, Justin & Tiffany Smetana

  3. You are awesome Will! Keep it on!

  4. Congrats Dan and Kelly!!! Sounds great. My little boy is 8 months old and has been doing the head nod... though not really in clusters plus it sometimes seems behavioral when we don't give him something. He had neonatal hypoglycemia (but no seizures) and was IUGR as he weighed only 2.5 kgs at the time of my c section (I had hypertension) 38 weeks and 4 days. The ped looked at the video and said just observe as he is ok in milestones he seems conscious but she happened to speak to her dad who is a neurologist and he recommended an eeg to 'rule out' because of the history... Your story is great and gives me courage and peace and I do hope he will be ok; do keep me in your prayers.

  5. It's been over a year since your last post. Hope that is a good thing and everyone is doing well.