Finding Joy

February 28, 2012

Butter Joy @ our fingertips!

It’s no secret that I think the key to a happy life is living full  in each moment. We have lived full moments in all situations since Claire’s birth, good, bad, scary, sad. I absorb each feeling, wrap my heart around these fleeting spaces of time  letting them soak into my being. The bad, sad, and scary force me to call on the name of my Savior. I let Him wash over me to get me through those dark times. 

But what about when all is well?

When I am having happy times do I still call on my Christ in times of plenty? Yes, I do! We are having a seizure free season of life now (thank you Ketogenic diet) and I want to continue to live it full. One new adventure to help us experience all the Happy life has to offer, is try something new.

Sled Hockey!

Megan, born with Spina Bifida, sails across the ice to get the puck!(This is what I think Claire will look like,this is Megan. See the link for more)
http://www.livingwellwithadisability.org/2012/01/sled-hockey-put-your-disability-on-ice/

I find that when life is traveling along at the super  high rate of speed it tends to go, I can easily get into the rut of everyday normal. It’s important to make small efforts to include more joy in life. The reward is a better quality of life and a better heart for living happy. We have first hand knowledge of how quickly life can go from good to bad. Epilepsy can do that to a life.

As I talk of finding  joy to make our days better, a neighboring northeast Ohio community,much like my own, suffers the most horrific tragedy of a fatal school shooting…and their joy is being sucked right out of life. It  makes this topic ever more important. Finding the joy in this moment because it may quickly be lost. Hold on tight to living full joy, break out of winter blues and everyday ruts. Keep God first, pray hard, and maybe we will find you on an ice rink, finding a new moment of happy, dressed in helmet, pads and on a sled chasing smiles around with a hockey stick.

As we begin a small new adventure of finding all the joy God has for us we say:

Goodbye everyday ruts…Hello Butter

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SUPERGIRL~CLAIRE

January 29, 2012

Miracles happen! Short but sweet video of our amazing supergirl!

 

 

“Unspeakable,unending,thanks be to God…”

Awareness & God

November 1, 2011

November is Epilepsy Awareness month. I am spreading awareness by sharing some very amazing news.
We were at Pittsburgh Children’s a couple of weeks ago for a 24 hour EEG. Today, I spoke with our neurologist’s nurse. She told me that Claire’s EEG was looking normal! When compared to all of Claire’s previous EEG’s this one was the best.
Does this mean Claire is cured of Epilepsy? No. She still has Epilepsy. This just means that during the 24 hours on the monitor, she had no seizure activity. Her brainwaves still show she can have seizures. She just isn’t having as many(a few small ones now and then) and had none during the testing.
So,  this is great news and a huge improvement from previous testing which showed lots of seizure activity. She truly is 100% better and is functioning at such a better quality of life. Her smile says it all!

I am giving all the credit to an amazing God who keeps working miracles in the life of this special child. I know for certain we were directed to the right plan for her by His hand. We chose the ketogenic diet, but not before praying and listening to what God placed in our hearts. I have always made decisions for Claire in this way. I know its right when I feel a peace about the decision. And let me tell you my heart is at peace. Not only do I feel at peace, I am also joyful in the love I feel God shower down upon us!
Always trust, never stop praying and find a peace only our loving Father can give! Miracles happen!
So, I am confident today to be able to say….
Goodbye seizures…Hello Butter!

Days of butter are going well especially since Claire is doing better!

 
We are on week six already and only one big seizure. She had three seizures the week before we started the diet. So that is quite an improvement. There have been a few days that I am suspicious of her having seizures we don’t see. The only way to know if her brain is having those “unseen” seizures is an EEG. We will have another one in October after three months of the diet. 

Until then we are enjoying these butter days, oh I mean better days.

Another plus is the addition of Breyers Low Carb Vanilla ice cream. I had the dietician put the nutritional facts into are ketocalculator and this was the result….

While she enjoyed this new treat, I don’t think it replaces her good old cone from pre- diet days. Notice the grit in this concoction? Well to get the proper ration I had to add fats. And you guessed it…chunks of butter and macadamia nuts. Like I said not her usual ice cream treat. I will have to fine tune the ratio for next time.

One more diet treat we have really fallen in love with is the avocado.

 It is a ketogenic dream carb. I love it not only because it tastes so good, but also because it is the perfect fat to carb ratio. This means I don’t need to add one single drop of cream or butter to this wonderful fruit, or is it a vegetable?

I don’t know for sure what class of food it falls into all that I know is that it is easy. I cut one up and weigh it so that I know how many calories it is and put it on a plate! Like I said its a dream food for those on the ketogenic diet.

Claire calls it her “cado” (rhymes with motto) She likes to use the word my now when she is talking about her food. Where’ s my “cado”, where’s my chicken and sauce are just a few examples of “her food”.

And can I just say I am becoming some what of a master chef in the ketogenic kitchen? I have never bought so much healthy food in one grocery store trip. Today I just knew people were looking into my cart and thinking “wow, what a healthy family that must be?” I even had salmon in my shopping cart. Along with lettuce,cucumbers, cilantro, tomatoes, onions,green peppers, bananas, and of course avocados!

We didn’t need butter today. We have a good supply always on hand since it is after all the staple of her diet.

Goodbye shopping carts full of junk food…Hello Butter!

Butter Birthday Bliss

June 13, 2011

Our first birthday party on the ketogenic diet was a success. I think it was even better than previous parties because I was not focused on food preparation. Instead, we had a tea party for Claire. It was perfect since the food consisted of mini versions of quiche, cheesecake,  & eclairs all from the GFS store. Easy, take out of the box & make pretty on a plate.

 
Claire was happy with her chocolate cupcake made from a recipe on the myketocal website and figured portions on the ketocalculator. I don’t think it was the best cake she has ever had, but I think for my first try it wasn’t too bad. I used finely shredded coconut instead if coconut flour, I think it was a little too  gritty.

Birthday cake on the ketogenic diet

She is allowed herbal tea, but we haven’t found a flavor she likes. I’ve even tried apple tea to replace the apple juice she loved so much. She has been happy with drinking water and just one diet caffeine free pop a day.

We are still missing ice cream and she does not like the frozen cream with fruit that she is allowed. So we have replaced ice cream with plain shaved ice. I do use sugar-free syrup occasionally to make it more of a flavored treat. But we try to limit artificial sweeteners, especially if she has had her diet pop.

Our family loves a good spread at a good party, but we really didn’t miss the food. We just enjoyed the being together to celebrate another year of God’s blessings in the life of our amazing miracle girl.

 
We keep asking Claire ” how old are you” and she grins her big sparkling smile and says “I’m four…where did three and a half go?”  so today we say…

 
Goodbye three and a half…Hello Butter

Sugar- Free Summer

June 8, 2011

Another school year has flown by and here comes summer!

It will be an interesting sugar-free summer. I know this because I am really missing ice cream. I have not perfected the home-made ice cream that Claire can have,but will have to soon. Ice cream is one tradition we can not do without!

The day before her diet,one last real treat!

A smile to melt my heart!

 
 

 

 

 

 

 

So the kids have completed another year of learning and so have I…

 

What I’ve learned so far about the ketogenic diet:

 
1. The astounding ability that children have to adapt to any situation. Claire can be happy no matter what life throws her.

2. Routine is better than chaos. The diet is most effective when maintained as a daily routine. The kitchen now has open & closed hours.

 
3. The ketogenic diet changes how one thinks of food. I am amazed that such small portions of food are enough to fuel the body.

 
4. Faith and butter are key to balanced living onsuch a strict diet therapy.

5.Positive attitude is everything. It’s hard to be sad when you are happy!

6. Giving up sweet sugar treats is hard. But the reward is living a richer life. We enjoy simple sugar-free pleasures. A strawberry tastes so much sweeter when your taste buds have forgotten what sugar is.

 
7. Butter days can be better days. Meaning,make the most of what you’ve been given.

 
8. And last but not least, God’s plan is the best plan. Trust Him and your life will be butter…oh I mean better!

Goodbye school days & ice cream…Hello Butter!

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