Saturday, April 28, 2012

White Blood Count Update

Ben's white blood count has gone up a teeny tiny bit.  This means that everything will stay the same.  We won't need to make any med changes at this time.  We also get to move on to monthly blood draws instead of bi-weekly. 

This is great news!  Yeah! 

I also discovered a new resource for meal ideas.  I'm hoping that I can find a few more complete meals for Ben.  The cream and macadamia nuts are becoming a losing battle. 

Thank you for praying!  We will go back for bloodwork at the end of May. 

Tuesday, April 24, 2012

Epilepsy Stroll Video

In case you missed out on the fun at the Dallas Stroll for Epilepsy, here's a little video of the day.  If you watch closely you can spot me and Leeon picking out t-shirts and then you can see our Team Ben sign in the background when the man is speaking.  :)

It was such a fun day.  It felt so good to be walking with others who understand.  It felt like we were bigger than epilepsy.

Tomorrow we take Ben to see Ms. Rosie (the nurse that always draws his blood). 
He said he's not coming.  :)  But he's always compliant when we get there. 

I'm not sure what to pray for - that his levels will rise and we keep everything the same or for his levels to drop and for us to start to wean a med.  Maybe that is really what we want.  I don't know what to pray for except for God's will.  Pray for peace of mind as we trust in Him.

Saturday, April 21, 2012

Upside Down Pizza

Ben had to warm up to this meal.  There were times he would ask for it and then cry through the whole thing.  I think we overdid the peanut, pepperoni, and cream meal at the beginning of this diet.  He's still not crazy about the pepperoni, but he does like these little "upside down pizzas" occasionally. 

Here are the ingredients:
12 g of pepperoni (about 8)
15 g of diced tomatoes (pureed)
2 g of olive oil
.5 g of tomato paste
.5 g of garlic paste
15 g of Parmesan cheese

Mix the sauce, oil, and cheese together and place on top of the pepperoni.  Then broil for about 5 minutes.

This meal is not a complete meal.  It needs more fat.  I can give him 30 grams of macadamia nuts or 40 grams of heavy whipping cream.  Lately he is becoming disinterested in eating so many macadamia nuts, but we just keep at it. 

Team Ben fundraiser update

I received an email letting me know that Team Ben raised $1,570 for the Epilepsy Foundation! 


It was such a wonderful day and the Epilepsy Foundation has been a constant source of support and information to us since we started this journey. 

I'd like to give a special thanks to Ben's little friend, Symphony!  Symi and her mom raised over $530 by baking and selling delicious cookies.  You can check out her blog here

Thank you for helping to make a difference. 

Tuesday, April 17, 2012

white blood count roller coaster

I got a call from the neurologist tonight.  Ben's white blood count has dropped significantly.  It's been bouncing around on the low end for a while now, but it has taken a plunge.  We are scheduled to go back in about a week and a half for another blood draw.  If it gets any lower or doesn't show signs of improvement, we will have to wean depakote.

This, of course, brings some uneasiness. 

Depakote was not our answer when we first started.  We had to add clobazam because it wasn't working.  Then we even added clonazapam back in.  We continued to struggle to that's when we started the diet.  So we know that depakote alone has never been our answer.

But we also had the largest fall out when his depakote level dropped over the Christmas holiday.  But even after his level was stabilized we added a fourth med, felbatol to finally get the results we have now.

We will just take things as they come.  We are praying that his level will go back up so that we won't have to make any changes at this point.

And who knows?  Maybe this would be a good thing.  Maybe this wean would be uneventful and that would mean one less med in his system.

It's the uncertainty of it all, the fragility of the freedom we've found, the fear that it'll all just far apart that starts to invade my thoughts.  But Joshua 1:9 says, "Have I not commanded you?  Be strong and courageous.  Do not be terrified, do not be discouraged, for the Lord your God will be you wherever you may go."

Thursday, April 12, 2012

HOPEful words from my little guy

The other night, I had this conversation with Ben:

Ben:  I can't wait to go to kindergarten!
Me:  I know, it's going to be so much fun!

Ben:  I'm gonna eat in the cafeteria.
Me:  Yes.

Ben:  I'm going to wait in line and get my food.
Me:  Well, that food is not on your list.  You will bring other food to eat.
Ben:  Oh....{silence}

Ben:  Well, one day when God heals me - then I will get to wait in that line and eat that food!
Me:  Yes Ben, that is exactly right!

I love his optimism. 
I love that he just keeps trying.
I love that he chooses to focus on the positive.
I love that he has HOPE.

Friday, April 6, 2012

3 months...

Ben had his last seizure 3 months ago today. 

That's means we've had over 90 days of seizure freedom!  :)  :)  :)

I'm so thankful for God's hand on Ben's life. 

Wednesday, April 4, 2012

Hope - my focus for the month


We were at the park the other day and I was pushing Ben on the swings and watching him climb on the equipment and my heart was overwhelmed with gratitude.  Just a few months ago, he was unable to do any of it. 

I remember walking into school late during inservice one day in August.  Ben had just had multiple seizures and we were in the beginning stages of this journey.  I had cried my heart out in the car and tried to gain composure so I could get into school.  As I walked towards the door, I got a text from my brother.  He sent me this scripture at the exact moment I needed to hear it.

Hope is a powerful thing.

God is a God of hope.
As we choose to trust in Him, he fills us with joy and peace.
And then as our hearts and minds find rest, supernatural hope overflows.

At Christmas, we were in a very dark place but God was so real to us.  I wrote about the Hope that was born and our reason for celebrating Christmas.  I posted this video about what His birth really means for us.  But as we are approaching Easter Sunday, I can't help but think again about this great Hope

Without Easter, Christmas would just be a good idea; a comforting thought; a beautiful dream.  But Easter takes the events of Christmas morning and makes Hope a reality. 

"God wrapped Himself in skin and walked the streets of a broken humanity."  He came to give us everlasting life.  He came to bring light to our darkest moments.  He came to bring peace to your situation.  He came to give us Hope

My eyes have been opened to so many situations that seem hopeless.
You may be facing your own seemingly hopeless situation right now.

My prayer is that my God
who is full of HOPE
will fill your heart with joy and
your mind with peace as
you choose to trust in Him.
I pray that you will
overflow with the supernatural HOPE
that can only come from Him.

Happy Easter!

Monday, April 2, 2012

our neuro visit today

We had our appointment today with the neurologist.

Ben has gained only 2 pounds from our last visit and has grown 1 inch.  He is still under the 50% for height and weight so the doctor is not concerned.  Ben has refused his daily snacks lately so he's dropped 100 calories with that change alone. 

We also decided that it is best to leave everything the same.  We will not change any meds or the diet at this point, we will continue to monitor his progress until our next appointment in June. 

We talked a little bit about some of the impulse control and trouble focusing that has become more evident.  The doctor said that he's not surprised to hear this based on what his EEG showed.  He said that this is part of the disorder and probably compouned by the medications he is on.  He said that often once the seizures get under control, these issues present themselves more predominately because they are not "so worn out" from all the seizure activity.

We feel a bit conflicted.  We are thrilled with his progress.  We can't believe we will celebrate 3 months of seizure freedom in a few days.  But we also feel like we aren't where we want to be.

Would you pray that God would give us peace about the medical decisions we have made?  And that He would give us wisdom in parenting Ben?  It's hard to be a parent.