Friday, April 27, 2018

Successful Surgery!

Woo Hoo...
While little boy was sleeping yesterday...
His leg and foot went from this position...
To this position...

Yes. That is a smile on his sleepy face!!
We are hanging out at the hospital hoping to go home today. It's pouring rain outside and we can hear the wind howling, but if we get the green light, we are not going to let sheets of rain and wind gusts hold us back!
Of course we have to be fever free and prove we can get out of bed and manage crutches! 
Go John, Go!!

 For who is God besides the Lord?
    And who is the Rock except our God?
It is God who arms me with strength
    and keeps my way secure.
 He makes my feet like the feet of a deer;
    he causes me to stand on the heights.

Wednesday, April 25, 2018

Two Straight Legs

John and I are off on a new adventure today... we are traveling to Philly.
Tomorrow John has surgery. When he comes out, for the first time in his life, his right leg will be positioned correctly. Two straight legs.
We take straight legs for granted.
John doesn't.
He's had to live all his life with a turned leg, no hip sockets and unbending knees and feet.
It makes walking hard.
Tomorrow he will wake up to see both his feet pointing in the same direction.
He's excited and scared.
We are happy for him.
It will make walking a lot less awkward for him. It won't mean he will be entering in any marathons - walking will always be a struggle for him. But every single bit counts and having your feet heading in the same direction is a BIG deal!
So pray for John. Please.
Please feel free to leave comments, prayers, jokes and verses for John. I will make sure he sees them all!


Thursday, April 19, 2018


About an hour from us is a wonderful zoo! When you enter the zoo you have the option of buying a cupful of food that you can feed to the different animals. We love the up close and personal that feeding the animals gives you. It takes a lot of bravery to hold food out in your flattened hand for a giraffe to eat!
The food is specially designed and healthy for the animals to eat.
They love it so much that sometimes they bypass your hand and just go for the cup.
It's a fun, lively experience that we love doing with our children.
But don't feed the bears.
Nope. They are behind the glass enclosure and you can only look.
We have a bear in our house.
An adorable little bear who cannot be fed - no matter what she tells you.
I don't care if she walks up to you with her adorable little hand out and begs for the snack you are munching on...
Please, please, please... don't feed our bear.
We are deep in her diet and it has been unbelievably good.
Before we started the diet, little girl was having up to 150 head slamming seizures a day and 50 or more smaller seizures that we weren't even counting on our counter.
Four weeks into the diet and she is no longer slamming to the floor.
Did you read that??
That awful pink helmet with the face guard to protect her sweet little face is now sitting quietly on our dining room table. Her last head slamming seizure was the day we left the hospital but we were too shocked and nervous to even say anything.  I mean - seriously??? One day she is slamming to the floor in front of the nurses station scaring them all silly over and over again, and the next day she is running up and down the hospital hallway without falling one time.
It's been a crazy breath-holding bunch of weeks watching her and marveling at the change. As the seizures have eased, our little girl has been waking up mentally. Two months ago she couldn't focus for more than 30 seconds at a time. Now she is building puzzles, looking at books, coloring, playing happily with the boys and babbling up a storm.
She still is having seizures. We are not completely out of the woods. But her seizures are smaller and though no-less concerning, a lot less dangerous.
What made the difference?
Three factors.
About 8 weeks ago we started her on CBD oil.
About 7 weeks ago we started her on a modified Ketogenic diet and then 3 weeks later started the full Ketogenic at the hospital.
Ever since we have known about our little girl and her epilepsy we have been praying.
Prayer. Diet. CBD.
It's not important which one is working.
What matters is that our little girl/bear is coming out of a terrible time and we are committed to keeping her that way.
The diet is HARD.
We spend an average of 90 minutes a day prepping and stressing over her food.
Every single morsel that goes in her mouth has to be weighed. She has STRICT menus that we have to follow. We have a dietician who has to approve any changes or additions to her menus.
It's a ridiculously unhealthy diet.
I mean seriously... the amount of fat she is eating each day is absurd.
Would you like a bit of Keto bread with your butter???
Who spoons oil into their child's mouth as part of their dinner??
Who cuts a half a strawberry into tiny thin slivers to make it look like she is getting a lot of strawberries?
Who mixes nuts in a bowl and adds a tablespoon of butter chunks and calls it cereal?
Who mixes mayonnaise and ranch dressing together and serves the mixture as a side dish?
We call it the mayonnaise diet for good reason.
Thankfully, she LOVES the fats. She eats the butter chunks whole. She willingly drinks the oil. She loves her mayo-ranch side dish.
It's our saving grace!
But it's hard.
She loves the fats but she also wants what we are eating.
It is mentally hard on us as we try to find ways to keep her from grieving the foods she cannot have.
When the boys get their big bowl of fruit for dessert with a small squirt of sweet whipped cream on top... she gets a massive bowl of unsweetened heavy whipped cream with a two tiny slivers of strawberry on top.
When we have our thick, juicy, pizza, she gets 12 pieces of pepperoni with a tiny drop of pizza sauce and a tiny bit of shredded cheese.
For Easter she got her 95% cocoa bar which she can eat (in tiny portions) with heavy whipping cream and the boys got one chocolate bar each. The rest of their baskets had small toys, books and audios in them.
We try to match what she is eating with what we are eating.
We are mindful and careful and vigilant but that doesn't mean there aren't periods of tears and sorrow. Hamburgers and French fries meals are sad affairs when French fries aren't sitting on her plate.
She doesn't understand the diet.
But she feels a thousand times better.
So even though she can't put it into words - we are fairly certain that she understands enough to know that what we are doing is good for her.
She isn't going hungry.
For those worried about our bear and whether she is going to starve on this diet - never fear - she gets 5 meals a day. Three full meals and 2 snacks. The amount of calories she consumed before the diet are exactly the same as the amount of calories she gets now. She has not lost weight and even though she is eating an exorbitant amount of fat each day, she is not gaining weight.
To balance out the unhealthy parts of the diet... she gets to consume a bucketful of pills each day. Everything that the diet lacks is covered in that bucket.
We can't cheat on this diet.
Not one tiny cheat.
We can't let her have a single goldfish cracker. Or a bit of candy. Or a cookie.
Any of those foods and a thousand more could throw her out of ketosis. Right now her body is burning fat instead of carbs. This is GOOD. This is the purpose of the diet. They don't understand why burning fat helps with seizure control but it does. If she gets an uncalculated carb she could be thrown out of ketosis and have worse seizures than before. We have been warned. Over and over and over again. 
We are vigilant. Everyone in the family is well aware of what we are doing. We have rearranged our entire kitchen for this diet. Her food is separate from ours. We work hard not to leave food out on the counter that would tempt little girl. We are careful. But out in public - where people don't understand - it is going to be so much harder.
Food is a way to show love. It's something we often share naturally.
But not for her.
You can't feed her.
No matter how cute or desperate she seems.
If she is with you in school or drama or church or wherever... please, don't feed her.
Please, please - don't feed our bear.

Friday, April 6, 2018

Little Girl Lost

Last Saturday we crossed the mountain to spend the afternoon with Elijah for our celebrate Rob and Elijah birthday weekend.
Little girl didn't know exactly where we were going and why, but she knew we were visiting her favorite Elijah and that was good enough for her. When she saw him walking across the parking lot towards us she took off running and threw herself into his arms.

Pure sweetness...
With three littles in tow... we decided to do some fun park hopping and check out some Harrisonburg playgrounds.
The first one had a great playground but an even cooler hill that was just right for climbing and rolling! 
The second park... it had a massive wooden castle with so many ins and outs and layers and tunnels and ramps and passageways that it was perfect for a great game of hide and seek.
Until we lost little girl.
I was close to panic until Rob called out that he had found her.
Huge sigh of relief.
She was found.
I ran over to where she was and decided I would stay with her like glue. To get to her, I had to duck under a section but once I did I called out her name so I could cement myself to her side.
She giggled and ran away. fast. A red balloon bobbing merrily in her tight little fist.
She didn't own a red balloon.
I looked down at a little girl who was staring up at me with tears in her eyes.
Did my little girl just steal your balloon?
Yes, she whispered.
I looked back up and saw that my little red ballooned girl was gone. Vanished. I ran through the section she had just passed through, but she was nowhere to be found. I turned down passageways and cried out to Rob that I had lost her, again.
We looked.
We called.
In a matter of seconds she had disappeared.
I've never lost a child that fast.
All five of us started looking. We spread throughout the entire castle. Calling and looking.
She was gone.
We looked at each other in despair.
Where in the world could she have gone?
Our eyes began to scan beyond the castle into the rest of the park. It was huge. Where could she have gone?
Until a couple called out - did she have a red balloon?  Yes. Yes.
They pointed in the direction they had seen her running. Far in the distance was a pavilion.  Rob took off running. I gathered the little boys and with Elijah, we watched and waited.
Huge waves of relief swept over me when I saw Rob reach down and pick up our little runaway, still clutching that stolen balloon.
I wanted to hold her forever and wring her little neck.
We walked her back to the little girl and she unhappily handed over the stolen treasure.
Our castle time was over.
Little girl spent the rest of the day holding Mama's hand!
After a lovely dinner together we bid farewell to Elijah and headed for home.
At John's request, we stopped at the top of the mountain and checked out the view.
I'm glad we did.

I not only got some precious pictures of my three littles...
I  got this gem with their Papa.

Precious, precious!

Sunday, April 1, 2018

From Our House to Yours

Happy Easter...
He is Risen from the dead.... just as He said!
And that has made all the difference!