Saturday, July 19, 2014

Lemonade Stand - Saturday, July 26th

We have changed the date of the lemonade stand from Friday to Saturday, July 26th.

According to Livys Hope, there are only 6 states left to host a lemonade stand. Do you know anyone living in Delaware, New Mexico, North Dakota, Oregon, or Tennessee?  Maybe they would consider helping out and turning the country purple for epilepsy awareness.

Go to www.livyshope.com to find out more!


Sunday, July 6, 2014

912

That's how many days it has been since his last seizure.
 
912 days!!!!

Two and a half years.

Things were at their worst then and even though we rejoiced about a "no helmet day", in my heart, I was so worried that things would only spiral downhill again.

But they didn't!

That's the part that still always amazes me. God can see further down the road than we can, but trusting Him is not always the easiest for me.  I'm thankful for His grace.

I'm also reminded that the fight is not over yet for too many kids.

That's why I'm so excited to announce our participation this year with Livy's Hope!  We are going to host a lemonade stand to help support the Epilepsy Foundation's fight against epilepsy. More details to come soon, but mark your calendars for the morning of Friday, July 25th!  We will be making the best lemonade in town for sure!

Take a minute to click on the link above and learn more about sweet Livy and her fight against epilepsy.  Her twin sister, Hailey, wants to see epilepsy cured.  Her goal is to turn the country purple by having a lemonade stand in each state. We are excited to help represent Texas!





Monday, June 30, 2014

how being a parent is helping me become a better teacher...

Working with children has been my passion for my entire life.  I love teaching!  As I’ve been reflecting on this past school year, I’ve realized that parenting Ben has given me a fresh perspective on the classroom experience.   We have been beyond pleased with Ben’s teachers and his school.  In fact, these things have been modeled all year by his teachers.  This list is NOT a reflection on his classroom experience.  It’s a reflection on my own classroom through the eyes of a parent. 
 
So here goes…in no particular order…here are 9 things that have become increasingly important to me as a teacher:

1.       The need for movement is non-negotiable.  I’m excited about GoNoodle and organizing a youtube playlist  that will help me with brain breaks for the kids. 

2.       Homework is harder than I realized.  I’ve never really been a fan of homework - kids work hard all day and really need time at home to just be kids.  But working with my own tired child at the end of the day has given me a new appreciation for how this routine really impacts the entire family dynamic. 

3.       ARD meetings (and parent conferences) are intimidating!  I am blessed to work alongside Ben’s teachers and therapists as both colleagues and friends.  I have participated in countless ARD meetings as a teacher.  But it is quite a different experience as a parent. 

4.       It’s not the parents’ fault.  It is easy to say, “If only those parents would…” but in reality there are many factors in a child’s progress.  Remaining positive about the entire family will benefit the child.

5.       Kids are, for the most part, giving you their best.  This goes along with the previous one.  When I’m positive, they will push themselves even further.  That momentum will cause me to find even more ways to meet their needs.

6.       Accommodations require creativity and consistency.  If I want my students to be their best, I need to be at my best for them.  Thinking outside the box to help kids experience success is important. 

7.       One on one attention must be a top priority.  I’m outnumbered!  Getting to know each individual child's strengths and weaknesses is the only way to ensure success. 

8.       Recess is the most important part of his day and what happens on the playground matters.  I’m amazed at how many times Ben talked about playground activities and its effect on his overall perception of himself and his day. 
9.   Kids need to be loved first.  Relationships are the most important part of the classroom experience.
 
I'm not really sure how this post fits in this blog, but it feels right to share.  This list certainly doesn't suggest that I've somehow become an expert in the classroom.  I have so much to learn.  It also isn't complete...I think I could write forever.
Ben's academic experience is as important as the medical stuff when it comes to figuring out all things Doose. 
What are some things you wish your child's teacher understood?

Thursday, June 19, 2014

Understanding is different than fixing.

First grade has taught Ben some important lessons. But we have learned a lot as well.

We went into first grade with some big fears. Will he catch up?  Will he grow to love learning?  Will he make friends?  Will being pulled out for speech, occupational therapy, and resource be too much for him?

In the end, it's been a tremendous year of growth for him.  He's made a years worth of progress and more in some areas!

But it hasn't been easy.

For a long time, we were focused on his deficits. We could only see how far he had to go and all the work we needed to do to "fix" him.  I felt like if we just did x,y, and z then he would catch up and everything would be normal. This caused a lot of stress in our home -I'm just being honest.  I had to take a step back in order to see the pressure that was mounting in him.

I am coming to the realization that he is on his own path. He is not broken. He doesn't need to be fixed. He needs to be understood. If I can understand how he thinks and how he learns best, then I will be able to support him.

We are visiting the neuropsychologist again soon. We are going to do a reevaluation now that he isn't on so many medications.  We are interested in understanding him better. Some of his behaviors and learning difficulties look like ADD. But they are also indicative of slowed processing, speech delays, and sensory issues.  We are hoping that we can decipher his needs better to see if medication may help him. We certainly don't want to medicate unless it is necessary.

I'm so proud of him. I love seeing him grow and I am willing to walk to journey with him - at his pace.

Saturday, June 14, 2014

update {finally}

It's been a while since I've updated...here's a look at some of what's been going on around here:
 
Ben turned 7!  I can hardly believe it and of course celebrating with real cake will always be special. 
 

 
We participated in the Epilepsy Walk at the Ft. Worth Zoo and had a wonderful time!  Can you see that sign Ben is holding? 
It says 819 days (and counting) without a seizure!!!!  It's wonderful that the count is no longer our focus.  He is seizure free.

 
We had a wonderful visit with our neurologist in May.  We are continuing to use felbatol only.  Ben has not had a dosage increase on this med ever.  He is on the same dosage as January 2012.  He is basically self-weaning this med once you account for growth.  So, we will hold steady.


And the best news is that it is finally summer! 


 
I have a lot to share.  Our focus has shifted from the medical side of this journey to the academic and developmental side of it all.  Ben is healthy and strong - his growth curve has returned to normal.  Ben is a joy to be around and tries so very hard.  I will be updating the blog more often again and I hope to share my heart. 

Tuesday, January 7, 2014

the day we've been waiting for

It's here - finally!
Ben has been seizure free for 2 years!
 
We've been waiting for this day since June of 2009.  Ben was only 2 years old when he had his first seizure.  It seems like that was so long ago.  And we have certainly lived a lot of life in the 4 1/2 years since the countdown began. 
 
I know the doctor warned us about celebrating prematurely.  He said that he can not consider Ben in remission quite yet because the Doose diagnosis changed everything.
 
But life is worth celebrating
 
We've been waiting for this moment too long to let it slip by without recognition. 
 
So we celebrated!
 


The significance of the day was definitely lost on Ben.  For that I am actually grateful.  I'm thrilled that this burden has become a faint memory for him.  I'm not sure it'll ever be that way for us. 

In June of 2009, I had no idea that we would have to wait this long for a celebration. 

And in early January of 2012 - I had no idea that the end was so close. 

The future is still a mystery. 


 
But we believe that it is the end of epilepsy for Ben.
We are trusting God that the seizures will not return. 
 
We have a HEALTHY child that will wean from his final med at some point (hopefully soon!) and remain seizure free - that's our hope.  We also pray for wisdom in parenting him and for continued progress academically.
 
But it's time to let go.
It's time to move on. 
 
It feels like this beast has been hovering over us for so long and I'm ready to start 2014 without it constantly being at the forefront of our minds. 
 
I battle with the fear of seizures returning daily.  If Ben is not with me and the phone rings, my mind instantly hears, "Ben just had a seizure".  It's my first thought.  If I hear him make a strange noise while sleeping, my heart falls to my stomach.  This nightmare has wrapped it's long, cold fingers through our hearts and minds and it's time to let it go.
 
In 2014, I want to focus on "The Lord says, 'Forget what happened before, and do not think about the past.  Look at the new thing I am going to do.  It is already happening. Don’t you see it?  I will make a road in the desert and rivers in the dry land.'"  (Isaiah 43:18-19)
 
As we left the celebration, Ben wanted to launch a balloon in the strong winds.  It didn't take long for that balloon to sail high into the sky.  It was a perfect way to describe how we are feeling. 
 
Let it go. 
Focus on the new things that God is doing in Ben's life. 
So long, seizures!
 

 
 Thank you for loving and supporting us throughout this ordeal.  We certainly never felt like we were carrying this burden alone.  We continuously thank God for restoring Ben's health and for giving us what seems like a second chance with him.
 
 
"About Benjamin, He said,
'Let the beloved of the Lord rest secure in Him
for He shields you all day long. 
And the one the Lord loves, rests on His shoulders.'" 
Deuteronomy 33:12



Tuesday, December 24, 2013

Christmas Eve

I have shared this video every year.  I apologize for the repetition, but Max Lucado's words are so powerful.

God interrupted time and humanity to provide eternal redemption for us and by doing so, Hope was born.

What a beautiful truth!

http://youtu.be/p0ICQSyoxVI

Merry Christmas!
Laurie, Leeon, and Benny