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

Saturday, December 7, 2013

snow day & another milestone

We are in the midst of an ice storm. 
I love when we get a taste of the winters that I remember as a kid,
although I am grateful that we don't have continuous low temperatures. 
I've become quite warm blooded apparently. 
 

 
23 months is a long time without a seizure and we are so thankful!
 
Today, Ben was telling me that he wasn't going to take his medicine anymore. 
I told him that we could talk with Dr. Perry about it again,
but that he is concerned that the seizures will come back. 
 
He said, "Mom, they are NOT coming back. 
I punched those seizures in the stomach and beat them up. 
So they are NOT coming back." 
 
We certainly hope and pray that it will be so!


Monday, December 2, 2013

O come, O come, Emmanuel

I love this song.
 
The world waits for a miracle
The heart longs for a little bit of hope
O come O come Emmanuel
A child prays for peace on earth
And She’s calling out from a sea of hurt
O come O come Emmanuel
And Can you hear the angels singing

Glory --- to the light of the world
Glory --- the light of the world is here

The drought breaks with the tears of a mother
A baby’s cry is the sound of love come down
Come down Emmanuel
He is the song for the suffering
He is Messiah, the prince of peace has come
He has come Emmanuel

For all who wait
For all who hunger
For all who’ve prayed
For all who wonder
Behold your King
Behold Messiah
Emmanuel, Emmanuel



Emmanuel means God with us
How amazing to think of God being with us. 
I love that Christmas is a time to really reflect on the hope we have in Him.

Can you believe that in a few days we will celebrate 23 months without a seizure? 

I'm thrilled beyond words, but my heart is also burdened for Ethan.  He is still having seizures.  They have been on the diet for more than two years and have added another medication to see if that will help.  They are quickly running out of options.  The severity and frequency of his seizures are certainly taking their toll on his little body.  Will you continue to pray for him and his family? 

God is with us.

Saturday, November 30, 2013

a heavy heart

My heart is heavy after learning about the passing of sweet Matilda
 
Although I have never met this family, I have followed their journey from an incorrect Doose diagnosis to the terrible diagnosis of Batten Disease. 
 
When Ben was tested for that disease, I thought my heart would crumble...I can't imagine walking that journey.
 
There are just no words...just prayer that peace will cover this family and that the hope of Heaven will sustain them.
 
*****

Wednesday, November 27, 2013

thankful

 
We are thankful this year for so many blessings - including Ben's health.  This year we all get to enjoy the same foods during the Thanksgiving meal.  He has requested "mashed botatoes"...I think we can make that work.  :)
 
Happy Thanksgiving!


Thursday, November 14, 2013

neuro appointment

We went back to the neuro this week.  It was an uneventful visit really - yea!!!  :)

His blood work all came back in the normal range.  Normal!  His white blood cell count hasn't been normal for a long time.  Since we started felbatol really.  His doctor thinks that the addition of felbatol to the Depakote is what was causing the issue.  Since he is off Depakote, the issue may have resolved itself.  But we will recheck labs again in 3 months to be sure. 

I reminded him that the two year mark is quickly approaching for us.  At the two year mark, epilepsy is considered to be in remission.  You can begin to wean meds and move on with life. 

I was disappointed with his reaction to my reminder.  He said that the research only supports that information for patients with consistently normal EEG's and for those with easy to control seizures. 

Ben's case doesn't fit within either of those categories.

Although we hadn't planned on weaning meds in January, I still liked the idea of being considered in remission.  But we will just continue to wait.  We will continue to count each seizure free day as a huge success - because it is!  We will keep using felbatol at his current dosage and check the levels in his system.  With time and growth he could potentially get to the point where his level is below therapeutic.  If he maintained seizure freedom at that point, we would know that it was time to wean.  We just have to wait at this point.

And weaning may be closer than we think.  I never imagined that we would have been able to wean the diet when we did.  You just never know about tomorrow.

He told us that about 15% of Doose kids will relapse.  Even after being med free and seizure free.  Even after normal EEG's.  We are always praying that this is not in Ben's future. 

Before we decide to start weaning, the doctor wants to do another EEG to make sure that Depakote wasn't normalizing it. 

We don't have to go back again for another 6 months.  That was like music to our ears.  We were on that schedule when things started in 2009.  6 month visits.  That feels like a huge step in the right direction.  :) 

 
We spy a seizure free future for Ben!



Thursday, November 7, 2013

22.


22 months without a seizure!
That's almost 2 years!!!!!! 

Friday, November 1, 2013

champions

November means its Epilepsy Awareness Month!

You have to watch this video...kids are amazing. 

They are strong, brave, and so resilient. 



I'm not sure any of the children in this video are dealing with epilepsy, but we know some fighters and would like to send this message of encouragement to them. 

So - Ethan, Gabriel, Jilly, Jade, Joshua, Nora, Jonah, Cole, and so many others...keep fighting, keep roaring, you are champions!

And to our own little fighter - we love you Ben!  The miracle we have witnessed is amazing.  We hear you roaring!  Keep trying, keep believing, you've got this. 

Tuesday, October 29, 2013

learning sight words

We have had really great success with using these sight word cards called SnapWords. 


(SnapWord cards on the left, homemade on the right.)  :)


Each card has a picture on the front with the word embedded into it.  On the back, there is a motion and a little story to tell along with the word as well as the word written in print only. 

When he is working with the cards, I will often just have to start the motion and he can say the word.  Other times, he tells the story aloud to himself and then can remember the word. 

Many of the words, he can read without the picture at this point.  This is the most he's ever been able to do.  Now we are working on transferring this sight word knowledge to when he's reading a book. 

This part of our homework time is easy - Ben is moving and talking and it works.  :)

Monday, October 21, 2013

so we are not giving up {guest post}

Jeannett at Life Rearranged has a wonderful blog and a beautiful family. 

I found her blog when Ben was really sick and I am always so encouraged by her authenticity.

The truth behind this statement was so profound.  I first read it when we didn't have Ben's seizures under control.  Some days I had to remind myself that God's goodness didn't depend on Ben's seizure control.  God is good - always - even when I can't understand my situation.

 
 
Jeannett asked me to write a guest post about our experience with epilepsy.  Her daughter, Jilly is struggling to beat epilepsy.  Click over to Life Rearranged and see how you can help #teamjilly



Monday, October 14, 2013

So long, depakote!

 
So long, Depakote!
 
Ben has been on Depakote since September 2011.
Wow, that seems so long ago!
 
Now that this med is gone, it means that Ben has finally returned to where we were in the spring of 2011.  We only have to use one medication to control his seizures.  In a few weeks, we will go back for more blood work.  We will visit the neuro in January sometime.  I'm thrilled for his progress! 

Monday, October 7, 2013

21 months!

21 months
without seizure activity feels like a miracle - because that's what it is. 

Have you ever met Jeannett over at Life Rearranged?  She does a beautiful job raising awareness about a lot of different topics.  Her current series is about epilepsy!  Her sweet little one, Jilly has epilepsy.  This month she is hosting a fundraiser and you can be involved.  Click here to find how you can support #teamjilly.  There are only a few days left so be sure to check it out soon!

Wednesday, October 2, 2013

help with handwriting

Writing and drawing are challenging for Ben.  This is one area that I think was directly affected by Doose.  When he was three, he was in preschool and was writing and drawing appropriately.  He was having occasional seizures at that time, but the worst had not yet happened.  It's as if his development in this area just stopped altogether. 

So here are a few things that we are doing to help in this area.  For starters, he has qualified for occupational therapy at school.  I'm very thankful for this intervention and we know that it will make a difference.

At home, we have started using PenAgain's Twist and Write pencils.  We love these pencils!  They are also available at amazon.  This pencil does not address the bigger issue Ben has with hand eye coordination when writing.  (I'm sure there isn't a pencil in the world that could do that.)  But it does eliminate the confusion in regards to grip.  It's also small enough that his hand doesn't get tired from holding the longer pencil.  There are two built in erasers on the handles so it works just perfectly for him.

 
We also are using a handwriting program called Handwriting Without Tears.  I can't say enough good things about this company's approach.  They use large muscle movements with 'sky writing'.  There is a music component as well that really helps the kids connect their learning.  I also love the 'verbal path' - we use the same language every time when writing a letter.  (For example, when making the letter E, I will say, "big line.  frog jump. little line.  little line.  little line.")  This will help when he's trying to recall which letter to write.  If I begin to say the verbal path, the hope is that his brain and hand will work together to correctly form the letters.  The pages in the workbooks look very simple and almost boring, but they are perfect for kids who struggle with visual stimulation.  I could go on and on about this program.  I use it in my classroom and have seen great results with it there as well.



One last tip I have for working on letter formation is an app called Letter School.  This app is definitely worth the small price for your mobile device.  It's a favorite around here for sure!  In the settings, you can even choose HWT as the model so it works perfectly as a reinforcement. 



The bigger issue is getting his hand to do what his mind wants him to do.  I'm still looking for more ideas and would love to hear suggestions in the comments section. 

Saturday, September 28, 2013

Hope confirmed!

I just read an amazing post on another Doose blog.

Click here to check it out!
I love to hear stories of HOPE!  I'd love to sit down with this young man and just listen to his journey. 

Wednesday, September 25, 2013

this blog...

I started keeping this blog at the end of October 2011.  I was very desperate for information about Doose.  We already had two hospital stays and my heart knew that things we just getting started.  I found little about this syndrome and so I decided to journal about our own experiences in hopes to record it as well as to connect with others. 

I've loved this little portion of cyberspace.  I have met so many wonderful people from around the world!  I've been encouraged by friends and 'strangers' alike. 

{Thank you for reading and encouraging our family on this journey.}

We are thrilled with Ben's medical progress. 
So thrilled that, at times, it seems petty to even talk about his other struggles. 
How can we talk about challenges when we have our little boy back?  How can we say anything negative when so many others are still striving for freedom from seizures?  How can we be frustrated when our son can do so much more than ____? 

But I feel like we are still on this journey. 

The truth is that some days are still pretty challenging.  It was hard watching Ben seize without being able to help him.  It is hard now to see him struggle academically.  My husband and I are both elementary school teachers.  School is what we do.  School is what we are good at.  We love to wake up and get there.  But school is a challenge for Ben.  He knows he is loved.  He loves his teachers and his friends.  But he comes home frustrated.  (This is NOT a reflection on his teachers.  We are SOOO thankful for everyone who works with him.  We want him to be pushed to do all that he can and even more!  We know that he is coming home exhausted because he's giving it his all at school.  This is what we want, it's just still not easy to watch.)

{Bear with me as I finally get to the point of this really long post.}

I've been listening to a sermon series by Chuck Swindoll called Confessions of a Cynic.  He's referring to Ecclesiastes 3 and our interpretation of life and it's injustices. 

If I'm honest, I have felt that this journey has been unjust.  It's not fair.  It's not what I wanted for my child - to deal with epilepsy, countless seizures, medical procedures and now learning disabilities.  This is not what I planned for my family.  Now that things have settled down and we aren't living in pure survival mode, I have felt this attitude of injustice welling within me.  {ugly, but honest}

Here is some of what Chuck Swindoll has to say about injustice:
"Does he [the writer in Ecclesiastes] say, 'Try to understand your circumstances?  no.  Compare your lot with another's and see how much better yours is?  no.  Does he say fret and fume?  no.  Become bitter?  No.'  He says to reject self pity.  Reject resentment.  Reject retaliation.  Find ways to discover advantages to your disadvantages.  We can't change our lot, but we can change our reaction to our lot.  Who knows the impact it will have on others?"
He goes on to ask three questions:
  1. What is your unjust disadvantage?
  2. When do you plan to replace passive self pity with active courage?
  3. Have you ever considered the impact your advantage (that is the disadvantage you have turned around to view as an advantage) would have on the world around you?
It's time for me to step out of the self pity of injustice. 

I can't change this lot for Ben. 
I can't change the lot of adjusted dreams for myself. 
But I can change my reaction to it. 

How?  That's the part I'm still working on.  I'm going to start with just being honest with God and surrendering my plans and dreams in exchange for His.  This "injustice" has brought me to the end of myself.  I can't do this on my own.  I need His wisdom and ideas and patience and understanding.


So...this blog.

The focus may shift a bit from Ben's medical condition and more towards how we are getting him caught up academically.  (I have to find a balance because I so want to respect Ben's privacy.  I don't want to write anything that may hurt him or take away opportunities from him in the future.)

I still want to share the HOPE that Ben's story brings to others just starting on this Doose journey. 

Thank you again for sticking with us on this journey.  I know that we are going to be able to report great improvements in the area of academics and behavior just as we have with his seizures.  Our God is greater!

Wednesday, September 11, 2013

that was then...

That was then...
June 2012 to be exact.
19 pills a day along with the ketogenic diet. 
 
 
But this is now!
 
 
5 pills a day,
 and the red ones will be finished in about a month!
Woo-hoo!
 

Saturday, September 7, 2013

another step closer...

We are another step closer to our goal - we've made it
20 months
without a seizure! 
 
Go, Ben!


Ben seems to be growing before my eyes. 
First grade looks good on him.


We are halfway through the Depakote wean.  It'll only be a few more weeks until he's completely done with that med too!  I can't believe how close we are to monotherapy!  My heart is thrilled for him and filled with hope for what is to come. 

Sunday, August 25, 2013

Benny boy, first grader at last...

We are all excited for another school year around here! 
 
It's time for first grade!


Ben seems so different than last year
More confident. 
Healthier.
Stronger
Ready.


My prayer for him this year is that he will give it his all and never give up.  I pray that his teachers will have wisdom to know how to help him and the patience needed to guide him.  I want him to make good choices and great friends.  I want him to love learning and have fun!
 
I am so thankful for the healing that has taken place in his life.  I'm thrilled that he doesn't have diet restrictions this school year or mid-day medications to take. 
 
It's going to be an amazing year!

Thursday, August 8, 2013

a record breaking kind of month

It's here!
19 months without a seizure! 


We are so close to the beloved 2 year mark and I know we will make it this time for sure!  We've been on the countdown since the summer of 2009 and we are really confident that now that we have broken Ben's all time record, we will surpass it and then some!  :)

We have started the Depakote wean, but we are only a few days into it.  We decided to wean slower than originally anticipated.  This came with a few hiccups because the pill cannot be cut in half since it is formulated for time release.  It doesn't come in a smaller dosage either so we had to switch to use the Depakote sprinkles.  We've never used these before, but I'm glad it is available for kids who can't yet swallow pills.  I break open the capsule and pour half of the sprinkles on a spoon full of ice cream and then he takes a regular Depakote pill, the felbatol, and his vitamin along with it.  The wean will take about 10 weeks instead of the original plan of 6 weeks.  It has given us peace of mind about the wean.  Other than a slight increase in his frustration level, we haven't noticed any side effects to the wean.

In other news, we have added a new member to the family.  We have been blessed with a wonderful dog, named Buddy.  He is a perfect addition and has become a wonderful companion for Ben.  He is so much fun and we have fallen in love with him already. 


Thank you for loving our Ben and for all of the encouragement you have provided on this journey.  It is with hope and great expectations that we enter the month of August and prepare Ben for first grade!   wow! 

Thursday, July 25, 2013

EEG update

It has been too long since I've posted an update about Ben. 

{It's actually kind of wonderful, isn't it?  It means that things are going well!}

Ben's EEG went very smoothly.  I always forget how much easier the short ones are.  No glue, just tape.  And as he's getting older, it's so much easier to sleep deprive him than when he was little.

It took us a bit to get results back - we were out of town as was his doctor.  But we are so pleased to say that yes indeed the results are NORMAL!  This is wonderful news and so it is time to consider a Depakote wean. 

However the message from the doctor came with a warning.  He said that there is no way of knowing if Depakote is playing a role in his seizure freedom.  He said that it is very possible for the seizures to return and warned us to stop the wean immediately at the first sign of a seizure and to call them.  This warning sounded differently from him than when we've weaned before.  Most likely because we did see results with Depakote at one point.  Also because his felbatol level is low and his Depakote level has remained the same for some time.  So perhaps his freedom is from Depakote with a bit of felbatol. 

The strange thing about epilepsy is that when we first started down this journey when Ben was two, all of his EEG's came back normal.  Every time.  It wasn't until the summer of 2011 that we got the first abnormal EEG.  I don't really understand how this all works.  Honestly, I don't think the doctors always do either.  Epilepsy seems to be a big game of wait and see in a lot of ways.

We've been at this crossroads before.  It's decision time and it requires a step of faith.  We've never had assurance that a wean would work, or that a med would work.  I think we've decided to pursue the wean, but we are going to ask that we take it even slower than he recommends.  It will give us peace of mind and it can't hurt to be conservative.  I've heard of complications with this wean in regards to behavior as it is a mood stabilizer and I've also read about withdrawal seizures particularly with how long he's been on this med. 

We are optimistic.  We are thrilled with this great report.  We need wisdom to make a good decision.  The doctor should give us a schedule to wean within the week.  It is at that point that we have to just take a step of faith. 

I was reading a devotion the other day and read the following quote:  "Worry is a thin stream of fear trickling through the mind.  If encouraged, it cuts a channel into which all other thoughts are drained."   It is easy for my mind to become a raging river of fear and uncertainty.  So I need to chose to trust Him instead. 



Any fear seems to dissipate quickly when I read this passage.  I love the image of finding rest in His shadow, living in His shelter, being covered by Him.  I'm thankful for the peace He offers. 

Psalm 91

Those who live in the shelter of the Most High
    will find rest in the shadow of the Almighty.This I declare about the Lord:
He alone is my refuge, my place of safety;
    he is my God, and I trust him.

For he will rescue you from every trap
    and protect you from deadly disease.

He will cover you with his feathers.
    He will shelter you with his wings.
    His faithful promises are your armor and protection.
 Do not be afraid of the terrors of the night,
    nor the arrow that flies in the day.Do not dread the disease that stalks in darkness,
    nor the disaster that strikes at midday.Though a thousand fall at your side,
    though ten thousand are dying around you,
    these evils will not touch you.
 Just open your eyes,
    and see how the wicked are punished.
 If you make the Lord your refuge,
    if you make the Most High your shelter, no evil will conquer you;
    no plague will come near your home. For he will order his angels
    to protect you wherever you go. They will hold you up with their hands
    so you won’t even hurt your foot on a stone. You will trample upon lions and cobras;
    you will crush fierce lions and serpents under your feet!
The Lord says, “I will rescue those who love me.
    I will protect those who trust in my name. When they call on me, I will answer;
    I will be with them in trouble.
    I will rescue and honor them.
I will reward them with a long life
    and give them my salvation.”

Friday, July 5, 2013

18 months and counting!

We are so excited to reach the 18 month of no seizures!  If my memory is correct, we have made it to this 18 month mark before.  After we got seizure control with trileptal, the first med, we went 18 months without a seizure.  Then they returned and soon after things got crazy and the Doose diagnosis was given.  So this month marks progress - next month will be record breaking for him!


We visited with our neurologist the other day.  His white blood cell count continues to be low so we are having to monitor that more closely again.  This means more frequent blood draws for Ben.  


We discussed our next step in the weaning process.  We all agreed that depakote should be the one to go next.  On top of causing slower processing overall, it affects attention in ways that actually mimic ADHD characteristics.  Getting rid of this drug may actually help clear up some of the issues he's having in school.  We'd love to wean for the remainder of the summer and give him the advantage of starting first grade without this med. 


The doctor advised us to have another EEG done before we make this decision.  He said that AED's (seizure meds) will never make an EEG look better.  They will control seizures, but the abnormal activity can still be seen on the EEG.  The Ketogenic Diet however, can change an EEG.  It can actually make the EEG look better than it really is.  I didn't know this.  Our last EEG was done while he was still on the diet.  He was also still on clobazam.  This EEG will give us a better picture of what is really going on in his brain while on felbatol and depakote.

We go on the 12th of this month.  He will be sleep deprived again and will be hooked up with the smelly glue - but it's still so much easier than the longer tests.  And it will give us more information to make a better decision.  I know that it is going to be normal.  I believe it.  I know that he is a different child than he was before.  We won't meet with the doctor afterwards, we will have to wait for the results by phone. 



He's been waiting to play baseball since fall of 2011 when the seizures prevented him from playing most games that season.  This was him on the way to his first practice - he couldn't get to the field fast enough.  What a joy to see him doing what he loves most (aside from mowing the lawn, that is)! 

I've been reading Psalms this month and this one is so powerful I had to share it with you.  No matter what we are facing, God is our refuge.  He is our strength.  We have so many more good days than bad days lately - we are in such a different place than before.  But if I let my mind wander...fear can easily overtake my heart.  The truth is that no matter the outcome of this EEG, God is our strength.  The Creator of all things is with us.  That thought is greater than any fear my mind can imagine. 


Psalm 46
 
God is our refuge and strength,
A very present help in trouble.
Therefore we will not fear,
Even though the earth be removed,
And though the mountains be carried into the midst of the sea;
Though its waters roar and be troubled,
Though the mountain shake with its swelling...
God is in the midst of her, she shall not be moved;
God shall help her, just at the break of dawn...
The Lord of Hosts is with us;
The God of Jacob is our refuge...
Be still, and know that I am God...

Sunday, June 9, 2013

Kindergarten Celebration

We just had Ben's Kindergarten Celebration the other night.  It was so fun to see him on the stage singing and dancing and looking so grown up. 
 


He had a little help from his sweet friend, Natalie and also his teacher when it was his turn to introduce himself and announce his future dreams.  He whispered, "My name is Ben and when I grow up, I want to me a lawn mower man."  :)



When I think back about this school year, it is exciting to see how far he's come.

In August, he was on four medications and the ketogenic diet.
He would fall asleep on the way to school and on the way home.
He would beg to fall asleep before 7:00pm on most nights and yet wouldn't stay asleep all night long.
He often took a nap in the nurses' office.
He was in a fog for the whole first semester really - even in the pictures from early in the school year, his eyes tell the story.  They were always half closed.

In June, he is on only two medications and a regular diet - no restrictions.
He has endless energy!
He sleeps all night long (if we get his evening medication in before 7 pm).
He no longer naps.
No more fog for him either - he is always ready for a good time.  :)

I bought ice cream for my class and when I went to put it in the teacher's lounge, I noticed this box.  I used it to store his ketogenic diet pizzas for lunch - I had forgotten all about the box and the pizzas left inside of it.  We were both in shock as we stood there looking at those pizzas.  It was almost surreal.  Ben didn't waste any time 'slam dunking' those pizzas in the trash.  And later that day we celebrated his last kindergarten lunch in my quiet classroom - just him and me, and normal kindergarten food.


This moment feels familiar.  It reminds me of when we celebrated his first birthday.  He grew and changed so much during those first few months of life.  Every day we got to see him do new things and get stronger and stronger.  That's what this year has felt like all over again. 

growth.
amazement.
joy.


and to top the night off - he got to eat a real ice cream cone! Yeah, Ben!

Wednesday, May 29, 2013

a new normal

With Ben's first seizure we were introduced to a new world.  We learned new things about seizure types, treatment options, medications, risks, side effects, diet therapy, and hospital stays.

But there is more to Doose Syndrome than just seizures. 

We've noticed some delays - some struggles that haven't gone away on their own.  Back in February, we visited a neuropsychologist for an evaluation.  We have submitted those results to our school, completed a few more evaluations, and we just had Ben's ARD last week.  I am so privileged to know this group of educators on a personal as well as professional level, so the meeting went very well. 

It seems like we have been introduced to another new world.  This time we are learning new things about learning disabilities, occupational therapy, and behavior management. 

Leeon and I have been to many ARD meetings as teachers, but it is different to sit on the parent side of the table.  It can be very intimidating and difficult to hear results and prognoses.  It was hard to hear that therapy may not "cure" a particular issue but rather "compensation skills" were the desired outcome. 

But what I know is that my son is more than a number. 
He can do hard things.
He can overcome obstacles.

And he will.

Thankfully, we are getting intervention early, everyday he is making gains, and the delays are in a few specific areas.  He will receive support services next year in all academic areas as well as speech and occupational therapies.  With this added support, I know he will continue to grow and develop.  I also know that we aren't finished weaning meds yet.  We may see another time of HUGE gain when we get another medicine out of his system. 

This post is mostly for the other Doose moms...I know when we first were diagnosed, I was desperate to find any information that I could.  I wanted to see down the road a few years as I wondered what this diagnosis really meant for Ben.  I hesitate to share a lot of details here in cyber-space.  After all, this is HIS story.  {It's interesting how accommodating we tend to be towards health issues, but there is still so much stigma attached to learning disabilities, physical handicaps, and emotional and relational issues - but that's another post altogether.}  I want people to see him for who he is, not for his limitations.  That being said, if you'd like to know more about the special ed process, the testing we've had done, and specific results, please email me so that we can have a private conversation. 

We ask for your continued prayer support.  Please pray that we will have the wisdom to understand the balance of pushing him to reach new limits and yet communicating to him that his best is enough.  We need understanding as we adjust our expectations.  This is not the road we envisioned for him.

We are so thankful that...
God has a plan.
A beautiful future is in store for Ben.
Although this is new territory for us, none of it has surprised his Creator.
God has promised to give us the grace needed to get through this challenge, just as He has seen us through the physical aspects of Doose.

 
(source)

Monday, May 6, 2013

16 reasons to be thankful....

Since today marks 16 months without a seizure, here are 16 things we are thankful for!

  1. No seizures for 16 months - that's 486 days!
  2. He's been off the diet for over a month.
  3. I haven't carried diastat in my purse for a long time now. 
  4. We don't have to plan our entire day around Ben's food anymore.  We can be spontaneous again!
  5. I don't spend hours using the ketocalculator to figure out meals.
  6. Ben has had a cough for the past few days and we were able to give him cough medicine!
  7. Everyday, he seems to be gaining new grounds.  He has initiated and maintained interest in puzzles and board games for the first time in a long time.
  8. He passed his speech therapist in the hallway during school, recognized her and called her by name on his own.
  9. He is asking a lot of questions - he is curious.
  10. He asked me what brownies were when I was baking some for school and he loved getting to be the taste tester.  :)
  11. His blood work all returned normal.  They checked things like potassium, liver enzymes, and cholesterol.  One cholesterol related number went from 186 to 39 in 2 months time.  This was while on the diet and off the diet.  I can't remember if it was his bad cholesterol number or the triglyceride number, but it is definitely looking better now!
  12. Family dinners are so much fun - we ate corn on the cob for the first time since 2011!
  13. His energy level is high! {someone remind me at the end of the day that I'm thankful for this}  :)
  14. He wants to "read" by himself in bed at night for a few minutes.
  15. He can't remember a lot of food he used to have to eat on the diet...he could only name "nuts and cream".  This whole ordeal may only be a memory for me and Leeon.  That would be a blessing.
  16. We are getting our boy back!  Everyday is a better day in some way.  Sometimes its something so small you could almost miss it, but oh, we are thrilled!
 


Wednesday, April 24, 2013

the lengths a parent will go...

i hate epilepsy. 

I really do. 

With every passing day, we become more removed from the daily battle of seizures, but I will never forget how horrible those days were.  We don't take this reprieve lightly either - we trust and believe that they are gone for good.  We enjoy every moment and refuse to let life pass us by.  We focus on today and how wonderful it is to see our little guy thriving. 

When we first got the diagnosis I found DSEA and the online support group.  It was a definite answer to prayer.  As I've gotten to know some of these families, I continue to be amazed by their strength and resolve to fight for their little ones.  Heather, the founder of DSEA is a great example of a warrior mama.  Her little guy has been fighting Doose for a long time.  She has never stopped looking for an answer, never given up HOPE that the seizures could be stopped. 

It seems that her fight is starting to pay off.  Zaki is seizure free right now.  It's wonderful and amazing and he's doing more than he's been able to do in a long time!

But his treatment is unconventional. 
His cure is actually illegal where I live. 
His family is getting their little boy back because of medical marijuana. 

This post is not intended to open a debate about the use of medical marijuana.  Instead, it is intended to highlight the lengths a parent will go to seek healing for their child.  Watch this video to see sweet Emily and her family as they start the process of seeing if medical marijuana will be her cure.  It will also highlight Zaki and his family and the miracle they are experiencing right now. 


As thrilled as we are that Ben is doing so well, we are painfully aware that there are still so many struggling.  Ethan is still fighting to have more good days than bad.    Joshua, Jade, and Nora are still fighting this battle with the help of keto. This little one is fighting a hard battle after having a corpus callosotomy.  Gabriel is celebrating over a month of no seizures and has made it through an entire year of keto.  I mentioned a while ago that a little one, "H", (from the online support group) saw his seizures return after 18 months without a single seizure. He is trying steroid treatment right now and needs a miracle.  And the list goes on!

So what can we do? 

We can pray.  Pray for healing for these little ones and for strength for their families. 
We can give.  DSEA accepts donations to support families with medical costs as well as research to find a cure! 
We can accept.  Epilepsy is difficult to understand - embrace those struggling with it.

We can HOPE. 
Hope for a cure. 
Hope for healing.  

Monday, April 15, 2013

oh happy day!

We invited a few friends and family to help celebrate the end of diet therapy for Ben.  We went to a local buffet and it was so fun to listen to him giggle as we walked around letting him pick out what he wanted to eat.  (He chose rolls and mashed potatoes!)


I don't think Ben stopped smiling the entire evening.  It was a great night of celebration!  We had Ben say something before we started and he proudly announced again to everyone that "my diet is over!"  He is beyond thrilled!  He also thanked everyone for their prayers.  He knows that God answers them!




We all sang, "Happy no more diet day to you!" and he just smiled!  :)


Last week, his stomach was having a really hard time adjusting to normal foods.  But I think we've turned a corner these past two days.  Yeah! 

It's amazing to see the difference in his energy and alertness level.  He wanted to stay in kids church instead of complaining of fatigue and trying to fall asleep on my lap during the morning service.  He's remembering things that have happened days ago and talking about them.  It also appears that he's not constantly thirsty any longer.  He used to wake up numerous times a night completly parched - he'd drink an entire water bottle throughout the middle of the night (despite constantly drinking throughout the day).  We are seeing lots of small differences that really add up to big change. 

We are thankful - to all the other Doose parents reading this, hold on to your hope! 

Wednesday, April 3, 2013

easing in

The diet is over!

I still can't believe it most days. 

It so strange, but I find myself still reaching for the scale as I gather the ingredients for a meal.  I'm so glad it's not on the counter anymore.  :)  :)  :) 

The first few days were filled with emotion.  We were thrilled, excited, relieved, uncertain, overjoyed and really just ready to move on with our lives.  But the first few dinners were not without challenges.  It was as if we couldn't feed him enough.  He wanted to continue eating long after I knew he was full.  I was afraid he would eat until he made himself sick.

When I went to throw away a tiny bit of leftovers, he ran in front of the trash can to block it and couldn't stop yelling, "no!".  He kept saying that he was never going to get it again and he wanted it.  I sent him to his room for a little while to calm down, but he was just literally bawling.  I went in to settle him down and I've never seen so much emotion at one time.  He was crying, yelling, tense, angry, and sad. 

We talked for a long time about how the diet is over.  He won't have to be hungry anymore and he will always have enough to eat.  We talked about what being full feels like because I honestly think it's been so long since he's felt full that his body is confused.  He would tell me that his tummy hurt after eating and in the same breathe tell me that he was hungry. 

The meltdowns have slowed.  He's still trying to make up for lost time by eating everything in sight.  He remembers all the junk food he's given up and wants to eat it all right now, so we are trying to focus on the greatness of getting to eat to be filled and without any oil! 

His teacher reported that she's never seen him so happy - and we see it too!  It feels like a burden has been lifted.  He is so much fun to take to the store because the world is new and open to him!  He brought bananas to school the first day the diet was over and he was just beaming while he walked through the school.  We made homemade pizza the other night and he said, "I feel like I'm about to cry!" before taking his first bite.  He giggles with anticipation of new foods.

I think we are finding our new normal and we love it!  We are very thankful for the diet and yet so thankful that it's over.  15 months without a seizure is wonderfully encouraging (downright amazing actually!) and we know that we are beating this thing!

This month, we are focusing on God's promise to finish the good work that He started.  Every time we remove a part of his therapy, it confirms this good work. 

Sunday, March 31, 2013

He is Risen!

(source)

Celebrate the good news!
Jesus is alive!
Because He is alive, we have hope...we have love...we have peace...



Isn't it amazing that He not only secured our future - eternal life in Him in Heaven, but that He also gives us the grace needed for everyday.  Not for a moment do we have to face things on our own. 



Have a wonderful Easter...

Tuesday, March 26, 2013

what a day!

I've been meaning to update the blog for a while now...

I meant to blog that today is Purple Day!  A day to show support for those battling with epilepsy and to raise awareness for the need for more research.


I meant to blog that we found two more meals that he loves!  Using the low carb tortillas, he has loved eating a cheese quesadilla and even a cheese pizza!  We have been in love with this new lower ratio (2.5:1)!  I've never seen him eat so much food!

 
 


But I have even better news to share!!

Last night, I tested his ketones.  (I haven't tested his urine ketones for about two weeks.)  There was no trace of ketones at all.  The stick didn't change at all.  We retested a few more times, used strips from different containers to double check.  And it was true - not a hint of ketones.

My heart instantly knew that this was good news...but I cautiously approached the situation with calmness.  I researched, talked with others, and eventually emailed our dietitian. 

So today, it has been confirmed....the diet is over.

The diet is over! 

We had no idea that it would be this soon, but Ben never follows things on schedule as it would seem.  :) 

This afternoon, he had a teeny, tiny taste of things not on his list.  He was absolutely giddy with excitement.


At dinner, he had tears in his eyes as he ate his fill of beans - without oil! 

None of us can stop smiling! 
It's been a wonderful day...

I keep thinking about this scripture...

So we’re not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There’s far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can’t see now will last forever. 2 Cor. 4:16-18

Not a day has gone by without His grace...
grace for the moments that felt too hard...
and yet here we are now and it feels like a lavish celebration already! 

We are so thankful for that grace, for no seizures, for no more diet, for family and friends that have been our biggest cheerleaders, and that one day {soon} we will be completely med free as well!

Saturday, March 23, 2013

keep calm, stroll on...

 
Stroll Shirt 2013
 
 
We didn't actually make it out to the stroll this year for a number of reasons (boo!) but we are there in spirit!  We'll be there next year! 
 
Click here to see a video that explains why we walk.
 
Click here to find out how you can support the epilepsy foundation's mission.

Tuesday, March 12, 2013

difficult decisions

Ben started vomiting again on Sunday night.  I hate seeing him like this.  We've been using zantac and miralax to treat his tummy issues but it doesn't seem to be helping.

While kneeling in front of the toilet, Ben looked up at me and said, "Can we tell the doctor that we hate this diet?"  And at that moment, it became extremely clear that it's time for a change.

And it is time for a change.  We are a few weeks removed from the clobazam wean and so it's time to either start weaning depakote or consider removing the diet. 

This has not been an easy decision process at all, but we've prayed about it, talked about it, consulted with others, and have come to the conclusion that it's time for the diet to end.  We need to wean the ketogenic diet. 

Here are some reasons:
  1. the vomiting and constant tummy pain
  2. he is growing taller, but continues to maintain his same weight - his growth chart curve has been affected
  3. his compliance has become increasingly difficult
  4. he gags on his pancakes and can not tolerate macadamia nuts
  5. we are running out of fat sources for him that he can keep down
We also have to look back at his history.  In December 2011, he hit his worst spot ever.  The seizures were relentless.  We took him to the hospital and discovered that his depakote level had bottomed out and we gave him depakote via IV to help bring it back up.  So we know that this drug has been effective before - though not on it's own.

It wasn't until we added felbatol that the seizures were controlled.  Adding felbatol was a desperate measure.  We had just started the diet and in hindsight we should have spent more time tweaking the diet before adding this med. 

But it worked.  We had seizure freedom.  And thankfully we have never seen one since. 

We of course know the dangers involved with depakote and felbatol.  It was our goal to med free before we were diet free.  It is still our goal to get him med free and I believe that will happen one day soon.  But it has come down to a quality of life issue.  Ben is not happy - he is obedient and does what we ask of him, but it has taken its toll on him physically and emotionally.  When I did a little birthday interview with him last week, I asked him, "What is something that is hard for you to do?"  His answer was, "eating with other kids." 

I know that there are those that will question our decision.  And trust me, we have questioned it ourselves.  We do believe that the diet has been effective, but because we had so many meds on board and then added one when starting the diet that we never really could say - YES! the diet has been our sole miracle.  I've seen it be the miracle for so many kids and I do believe it has been beneficial for Ben. 

We realize that he has not been on it for the recommended two years and no where near the ideal of being on the diet without drugs and seizure free for a length of time similar to that.  We know that other kids have been able to be on this diet for years and years and some even plan to be on it for a lifetime.  And we know of moms that have weighed and measured meals far more than can even be counted.  To those kids and their parents, wow - your strength and persistence should be praised. 

So, what does this mean? 
  • We have taken the initial step down.  We are not at a 2.5:1 ratio and will stay here for three weeks. 
  • Then on April 1st, we will step down to 2:1. 
  • Then on April 22, step down to 1.5:1. 
  • Then on May 13, we will do a "Atkins diet".  She said we wouldn't have to weigh or measure anymore.  I asked her how do I do that?  She said we will talk more when we get closer. 
  • Then on May 27th, Memorial Day, we will officially be diet free and as our dietitian said,  "we can take him out for ice cream".  :) 
That's the plan. 

I'm thrilled!
and scared.
and hopeful.
and optimistic.

And mostly filled with faith.  I just know that this ordeal is over for Ben.  I believe that with all of my heart that he is not going to ever have a seizure again.  Never.  And removing diet therapy is just the next step. 

So today is a good day. 
Tomorrow will mark month 16 of diet therapy. 
In 62 days, I can put the scale away. 
In 76 days, I can let him scoop out his own portion of food from the dinner table and let him eat the biggest bowl of his beloved beans from Nana.

Let the countdown begin!
Pinned Image

Friday, March 1, 2013

on this day 6 years ago...

Ben made us a family...and we are very blessed!

We prayed for him - we wanted him long before he came to us and yet God's plan and timing is perfect. 


Happy Birthday to my favorite 6 year old!


I've been singing this song all day...what a beautiful idea - the angels singing and dancing on the day Ben was born just marveling at God's beautiful workmanship. 

We are blessed and so very thankful for our little guy!

Tuesday, February 26, 2013

so long clobazam

so long little white pill...


We are done with clobazam (onfi)!

Woo hoo!!!

Saturday, February 23, 2013

2013 Epilepsy Stroll

Last year, we participated in the Dallas Epilepsy Stroll at the Dallas Zoo.  We had a wonderful time!  Click here to read about that special day. 

We raised over $1,500 for the Epilepsy Foundation last year!  I know we can do it again this year!

This year, we are going to head to the Ft. Worth Zoo to be a part of the Stroll in CowTown on March 23rd. 

Click here to join the team.  You can make a donation, sign up to walk, or support an individual from our team. 

Thank you in advance for your support. 

Wednesday, February 20, 2013

a real ice cream cone!

After my ice cream post a few days ago, a reader (Jenn - thank you!) left a comment about using a real ice cream cone! 

She linked me back to Dawn's post at ketocook about a mini ice cream cone and I knew I had to try it!  It is the most perfect addition to the chocolate ice cream.  I needed to lower the ratio so this 5 calorie, 1 carb cone was perfect! 

 

There was a lot of drama involved in this ice cream cone.  When we first tried it, he still wasn't 100% happy with my ice cream making skills.  But after tasting it with this cone, it is really so much like the real thing!  There were lots of tears and frustration until he finally ate it.  Later he told me that he "just thought it would be bigger".  Once his expectations met reality and he accepted it, he was able to enjoy this snack.

He's had one every day since then.  I'm so thankful that Jenn shared this product and for Dawn who so graciously shares her ideas with us. 

Yeah for ice cream on a cone!

Monday, February 18, 2013

when wanting to quit...

It appears that Ben has developed reflux, or we have just finally figured it out.  It has caused gagging, vomiting, tummy troubles, and an overall sense of not feeling well.  We have added zantac to his daily meds, I think it's helping, but he still complains of tummy aches constantly.  We are now adding in miralax to see if that will help as well.

The diet is hard.  It's time consuming.  It's frustrating.  It's not fun  or easy on most days at all. 

But it's working for us and we are so thankful for that. 

I can't imagine doing this diet everyday without it's benefits.  But so many parents are still in the trenches.  Still fighting seizures and tweaking the diet in so many ways in search of what we have.  Those parents are incredibly amazing.

Like Ethan's parents. 

Remember Ethan

This sweet little boy is still battling seizures.  The doctors are at a loss for how to help him at this point.  They are in desperate need of a miracle.  Would you pray for Ethan and his family?  You can read more about them here.  They have started weaning depakote in hopes that maybe it will stop interfering with the diet. 

On hard days, it is easy to want to quit.  And I just said those words the other night to Leeon.  But then, I heard this scripture again and it encouraged my heart to keep going.  I hope that is encourages you as well and especially blesses Ethan's family as they persevere. 
 
So we're not giving up. 
How could we! 
 
Even though on the outside
it often looks like things are falling apart on us,
on the inside,
where God is making new life,
not a day goes by without his unfolding grace. 
 
These hard times are small potatoes
compared to the coming good times,
 the lavish celebration prepared for us. 
 
There's far more here than meets the eye. 
The things we see now are here today,
gone tomorrow. 
But the things we can't see now will last forever. 
 
2 Corinthians 4:16-18

Saturday, February 16, 2013

a must read...

I have finished reading this book.  It was very good.


 It is full of parent perspectives and real advice from those on the front lines of diet therapy.  I wish I had read this before we started.

I think the best part was when they interviewed THE keto doctor, Dr. Eric Kossoff from Johns Hopkins hospital.  He said, "If a child is seizure-free, the odds are 80% that he/she will stay seizure-free off the diet.  A normal MRI, EEG, and not having tuberous sclerosis complex increase those odds."  (pg. 254) That means we have higher than 80% chance that we will never, ever again see a seizure.  Ever.  (!!!!!!)

If you are about to start this diet, head over to amazon and order a copy - it is worth it!