Saturday, March 31, 2012

Dallas Stroll for Epilepsy 2012

Today was the Epilepsy Foundation's Stroll at the Dallas Zoo!

It was such a wonderful day!  There were so many people there supporting those struggling with epilepsy. 

Here's a look at some of the Team Ben members! 

We didn't get everyone in the picture and I'm sorry if we missed you - it was crazy how crowded it was.  This journey has brought together old and new friends - thank you for loving on us even when you didn't really know us. 







Feeding the giraffes was the highlight of the trip.  Ben got his fingers nibbled on a bit but was laughing so it's all good.  :)


Thank you so much for supporting Team Ben! 
This day has been "in the works" for a long time. 
When we first learned of this event, Ben was really having a hard time. 
So the fact that today has come and we were able to enjoy the zoo seizure free and helmet free was wonderful. 
Now we are just believing that one day soon we will get to enjoy it med free and keto diet free too.
Thank you again for loving our sweet boy.

Wednesday, March 28, 2012

Ben slept through the night!

I can't believe it!  I honestly can't remember the last time he slept all night.  It was probably before Christmas. 

He came into my bed at around 11:00 and I braced myself for our nightly routine of little boy insomnia.

BUT...he fell asleep!

I feel like the mom of a newborn baby after that first night of uninterrupted sleep.

Sleep is an amazing gift.  Thanks Benny!

Tuesday, March 20, 2012

How is he doing?

I get this question a lot and I'm very thankful when people ask.  It means a lot to me when others express care and concern for our little guy.

Ben is doing great!  We are past the 2 month mark of NO seizure activity!  He is doing so good.  He's able to play again, ride his bike, and do all things boy.  If you ran into us at the park you would never know that July 2011 - January 2012 ever happened.  The difference it that remarkable.  We are ever so thankful.

A few areas that we still need prayer are:
  • His white blood cell count dropped again.  The doctor is looking for trends so if it continues to trend down, we will have to look at making a medicine change.
  • Ben has gained 4 pounds in the last two months.  It doesn't sound like much, but that's 10% of his body weight.  When we go back to the doctor we will get more accurate measurements, but we may need to decrease his daily calories.  We need wisdom for the dietitian.
  • He is having a hard time with insomnia.  Either he falls asleep immediately but doesn't stay asleep all night or he can't fall asleep until the late evening hours.  Solving this problem would probably involve a med change so pray that the neurologist will have wisdom as well.
  • Leeon and I need prayer for perseverance.  It's easy to become frustrated with the food limits we have to set for Ben.  Dinner time is the most frustrating - it's a battle. 
  • As the days get warmer, we are noticing his inability to sweat.  This is another side effect of the meds.  Please pray again for wisdom from the doctor as we make decisions about possible medication changes.
I love having my boy back.  :)


Cookies for a Cure

Ben's sweet little friend, Symphony is having a bake sale to raise money for the stroll to support the Epilepsy Foundation later on this month.  Her mom happens to be one of the most creative people I know and you can stop by her blog, Inspired Ideas for more information.

Thank you Symphony for having such a giving spirit! 

I feel like I could never really express how touched we are with the generosity of others. We are constantly amazed...

Saturday, March 17, 2012

hindsight is 20/20

I've been working on my 2011 blog book (from my personal blog) and I just re-read an entry that in hindsight makes me take a step back.
It's interesting because I usually just blog pictures of Ben and our activities.  But God was busy working on my heart.  He was preparing me even then for the change that was coming our way. 

This entry was written on June 18, 2011.  Ben's seizures returned on July 5, 2011 - just a few weeks later.  They returned with a vengeance and turned our world upside down.

Here's the blog entry:

when fear sets in...

I read this today and it really ministered to me. I'm posting it because I hope it'll bless you as well. I also want to know that I can reference it quickly.

At times, my mind wanders to the great unknown and panic sets in as I wonder, "What will I do if...?" But I'm asking the wrong question. I need to ask, "What will God do if...?"

Beth Moore says, "Here's a smattering of answers to that mighty good question. 
 
I, the Maker of heaven and earth, will:
  • perfect everything that concerns you (Ps. 138:8)
  • work all things together for your good (Romans 8:28)
  • contend with those who contend with you (Isaiah 49:25)
  • fight this battle for you (2 Chronicles 20:15)
  • equip you with divine power (2 Corinthians 10:4)
  • delight to show you mercy (Micah 7:18)
  • meet all your needs according to My glorious riches in Christ Jesus (Philippians 4:19)
  • give you grace that is perfectly sufficient (2 Corinthians 12:9)
  • be your power in weakness (2 Corinthians 12:9)
  • do immeasurably more than you could ask or imagine, according to the power that is at work within you (Ephesians 3:20)"

What then do I have to fear? I have so much to learn about what it really means to completely trust in God. His promises are reassuring and His faithfulness is true...

Wednesday, March 14, 2012

Purple Day



March 26th is purple day

wear purple
write with purple ink. 
eat cupcakes with purple frosting. 

It's a day to raise awareness for more research and support those struggling with epilepsy.

Join in on the fun and spread the word that we need a cure for epilepsy.

If you'd like to participate in other ways, check out these links:

DFW Epilepsy Stroll supporting the Epilepsy Foundation
Doose Syndrome Epilepsy Alliance Virtual Walk 50K Challenge

Sunday, March 11, 2012

thankful


We are so thankful for wonderful friends!  We came home to a 4 pound bag of macadamia nuts at our door!  Ben wanted to eat the entire bag.  :) 

Thank you very much - we love you! 

Tuesday, March 6, 2012

good report!

We heard back from the neurologist today and it looks like Ben's white blood cell count is trending back up.  It had dropped even lower than we originally thought, but it's headed back up.  :)

We take him back next Wednesday for another round so we will continue to monitor it closely to ensure that it continues to go up.

Thank you for praying!

And today marks 2 months of seizure freedom!!!!  Yeah!!!!!!

We are thrilled beyond words to write those words.  He is our strength and hope. 



I found a love that never lets me go.
I found a joy deeper than what I've known
I found a place for my soul to rest
And leave my burden and lose myself.

You are my sun and shield, beyond what I can feel
I put my trust in who You are

You are the shelter from the pouring rain.
You are the freedom to begin again
You are the hope that will see me through.
I leave my all and I run to You

You are my sun and shield, beyond what I can feel
I put my trust in who You are
You are the strength in me, beyond what I can see
I put my trust in who You are

I will trust You, I will trust in You


Sunday, March 4, 2012

white blood cell count

We take Ben every 2 weeks for blood work - mostly because of the newest med, felbatol.

The last time we took him in was Wednesday, Feb. 29th.  I talked with the doctor that day and she said that the results came back from his previous draw and it showed a drop in his white blood cell count.  The notes that the doctor left were that we would watch the see what the next round of testing said before we made any decisions.

From what little information I have, I think his count is still in the normal range - but at the absolute bottom of that range.  I didn't even ask a lot of questions because I didn't want to even acknowledge that things could be not so perfect.  Of all the drugs we have tried, felbatol has been the riskiest.  There are some doctors that never try it.  We had to sign a waiver just to get him on it.

I'm concerned.

It's not good for the blood count to be low.  But my bigger concern is what if we have to wean him off of felbatol, what will that do to his seizure control?

I didn't even blog about this earlier but I'm asking for your prayers.  I can feel the anxiety raising within me as we get closer to Monday.  I'm going to call to see if by chance the results are in. 

My heart sunk when the nurse told me about his level because it was a reminder of this battle we are fighting.  But we are going to keep fighting.

Please pray that:
  • his white blood cell count will maintain or even raise
  • that his seizure control will be maintained
  • for our hearts and minds to be filled with peace - we have to focus on right now, not the what if's
Thank you for praying and believing with us.

Our God is greater!

Saturday, March 3, 2012

the cheese crackers worked!!!!!

I figured out the cheese cracker problem!!!!!!

Oh, happy day!

When I first started grinding up the macadamia nuts for the pancakes, I found out that if you only grind a few eventually it all gets stuck under the blade.

It looks similar to natural peanut butter.



I wanted a more liquid consistency for the pancakes.  But when you added more nuts, if you didn't completely liquefy it there were big lumps.

That is how I was using the nuts in the cheese cracker recipe - liquefied.

Today, I was trying to make some pancakes and only needed a little bit more of the nuts.  When I ground them, I remembered the crackers and thought maybe I should try using the thicker consistency for them.

So, I added the cheese, egg whites, and a pinch of salt.


Look at these!  :)  :)  :)
Yeah!!!!


Ben will be so excited when he sees them!  He's been asking for them and I told him they wouldn't work.  It's a mama's heart to want to feed her little one and I'm thrilled that I figured it out.  Thank you, God!

Never, ever give up!

Friday, March 2, 2012

my focus for this month

It's March! 

This month, I'm focusing on this scripture. 

I love that God is approachable.
I love that His throne is made of grace.
I love that we are able to speak to Him with confidence.
I love that He gives mercy
and grace
when we need it most.

What an amazing God we serve!

Thursday, March 1, 2012

Ben's birthday

Ben turned 5 today.

F-I-V-E.

I'm not sure where the time has gone, but it seriously needs to slow down.

Birthdays are special, but after becoming a mom they mean so much more.  I think I get more excited on his birthday than he does! My heart overflows each time I think about holding my little 6 pound baby for the first time.  I fell in love the moment I saw him and it seems that my love grows more each day.


And after spending so much time at Cook Children's Hospital,
birthdays mean so very much more.

We are so thankful for Ben - he is a gift from God and we are thrilled that he is seizure free for his birthday.

Look at my little guy...


And here he is tonight...so excited that he's finally 5.


I told him to make a wish and he said, "I wish that I'm 10 so I can have a skateboard."

Slow down buddy!  This mama's heart can't take it!

Happy birthday, Benny...I love you.