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.