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!

Thursday, February 14, 2013

{love}

Pinned Image
I love this song...




Ben plays it on his drums and always insists that I sit and listen to it with him because he knows it's my favorite song. 

It's truth. 

We will never understand the depths of His love for us.  I'm thankful for His love and for the family and friends He has given me who demonstrate love everyday.

{Happy Valentine's Day}

Wednesday, February 13, 2013

hope

This post is for all the Doose mamas who may feel like their world has been turned upside down. 

I'm so very glad that our hospital stays are over - I believe they are gone forever! 

But I will never forget how hard it really was. 

Click over to Life Rearranged and read a letter from one "hospital mama" to another. 

May your heart be encouraged tonight. 

God is good.  
Always. 
No matter what.

Sunday, February 10, 2013

ice cream {keto style}

Ben's class is having an ice cream party for Valentine's Day - this is a perfectly keto friendly opportunity for him to participate. 

Except that my child has refused to ever try ice cream made from cream since the beginning of this diet.  It's such an easy way to get fat into a meal and with added truvia, a drop of vanilla, and a sprinkling of cocoa powder and it's a very sweet little treat. 

I tried three different combinations of the above mentioned ingredients and the last one was definately the best.  It was good and he actually really liked it! 


(Although this is his 'fake smile'. He asked me after he ate it,
"Mom, does it make your heart happy that I liked it?" My little guy is the best.)

But as many things we try around here, one time was enough for this treat.  He has since refused it everytime we made it. 

Christy, over at Nora's special diet has perfected ice cream making.  Apparantly, ice cream needs sugar to maintain it's creamy texture during the freezing process, so you have to get creative when making it without sugar.  I'll have to try her version when I have time to devote to it - it is time intensive, but may prove to be worthwhile in the end for Ben. 

Until then, he'll have to settle for mine. 

For his upcoming party, I think he's going to skip the food portion.  He says he doesn't want to see what the other kids are eating.  We have as part of his 504 plan, that he can have an alternate activity when food is presented in the classroom.  I think we will go this route for this party.  it seems that he has become more aware lately that his food is so very different from others.  I think it is less stressful for him if he's off having fun somewhere instead of being reminded of the challenge set before him. 

{Makes him sound kinda spoiled, huh?  But this is where we are in life right now.  Just trying to figure out every day - one bite at a time.}

Wednesday, February 6, 2013

my focus for this month {refuge}

I drove to Ft. Worth today so Ben can have a neuropsych evaluation done.  It was so foggy that it was really hard to navigate (especially since I'm already directionally challenged to start with.) 

I couldn't see much ahead of me at all.  I had to rely on road signs and focus on what was in front of me more than trying to see through the fog at the unknown ahead.  All of my familiar landmarks were hidden.  When we pulled into Ft. Worth, the tall buildings had even disappeared in the fog.  If I didn't know they were there, I wouldn't have believed it. 

I couldn't help but notice the comparison of my drive this morning with where we continue to be in this journey...we can't see very far ahead.  We don't recognize familiar landmarks around us - we have to rely on directions and guidance.  We have to stay focused on what is right in front of us instead of what is up ahead.

13 months ago, we were only focused on getting the seizures to stop - and they did! and I will never again look at the calendar on the 6th and 7th of each month without remembering the significance of what took place.

But now our focus has shifted to helping him become all that he can.  We recognize that he has come so far in the last 13 months.  We are thrilled with the progress he's made.  But we have to also admit that there are some deficits in his academic development.  Thankfully, there are not gigantic delays, but there is just something not quite right.  The mommy/daddy gut feeling is that we need to be sure that we've turned over every stone so that we don't look back on these early days with regret.  Taking the time to make sure the little step behind doesn't become more.

It's hard to be a parent. 

That's why this month, I'm going to focus on {refuge}. 

God is a strong tower,
a shelter,
an everlasting King who can see miles and miles ahead of us.