Thursday, May 17, 2018

Little Girl


Rob and Aaron wanted to do "Annie" this spring so off to practices they went for several months. We debated about putting Mary in the show. She loves music. She loves dancing. It is her love language. We knew she would love to do it but how? How can you put a child who has out of control seizures on a stage??

We decided to compromise. No. She could not be an orphan. But she could maybe have a small small part on stage with the adults. We chose a tiny scene where some of the adults and boys come in and sing a small part of the NYC song. She could sing with them and someone could hold her and she would be safe. Eventually another small scene was added. At one of the practices, during the Hooverville song when the adults were doing their dance, she got up and walked over and sat down in the middle of the scene. She was so cute they decided to let her do that in the show. Sit quietly by the dog and keep it company. It sounded like a great idea. She went to the practices and sat and watched the adults singing and dancing and played her cute part well.

The first night of full rehearsals when the song started, it was her signal to go be cute next to the dog. Not Mary. Not this time. Instead of sitting cute next to the dog, Little Girl got right in the middle of the adults and proceeded to sing and dance alongside them. She turned when they turned. She did all the hand motions. She did all the moves. She sang at the top of her lungs her version of the song.  I laughed and laughed and laughed. She had been watching and knew every single part of that song. Yes. She had a seizure. It didn't phase her. She was in her glory. Everyone watching was cheering and laughing. Little Girl won the right to be on stage in "Annie."


She gets to sing. She gets to dance.

Her part in the show... she's listed as "Little Girl."

Yep. That's her name in the show. Little Girl. I laughed out loud when I saw it written in the program.




"Little Girl" does have adults who are spotting her. She isn't on stage without support. But she's singing. She's dancing. She's having a total blast. And what's really fun... she gets to be on stage with her Papa (reading the newspaper) and Aaron (brown coat front left). You can't see Little Girl in this picture as she is behind the crowd.
You Go Little Girl!!
You Go!!


If you are in the Charlottesville area this weekend... come see Little Girl and the rest of the cast in "Annie"

Friday, May 11, 2018

The Beast


Yesterday was a hard day.
 
Epilepsy is a quiet beast. It too often catches us unawares and rears its ugly head.
 
I was in the bathroom with little girl. She was standing next to me when the beast struck. Her head slammed into the sink. I grabbed her but it was too late. Blood came pouring out of both her nostrils. Cries of pain and terror. Cradled in my arms with a towel against her nose I yelled for Rob.
 
I hate the beast.
 
I hate it.
 
Over the last few days he's reared his ugly head. Slamming her head into the sink was the last straw.
 
Little girl is sporting her pink helmet again.


 
She took it in stride.
 
We wanted to cry.
 
Thankfully, we think we know why the beast is currently striking. Some of her most recent bloodwork had a few rather severe deficiencies. So we are adding more supplements to make up for the imbalances caused by the diet.
 
Unfortunately, the four times a day, 7 day a week nifty pill box that we fill up with all her pills is not big enough. Her new regiment of drugs now requires pills five times a day.
 
I hate the beast.
 
I have to remind myself that he's much quieter. Less fierce. We have pushed back against him and claimed much of what he had taken. We are impatient. We want him gone. But her kind of beasts do not disappear quickly. Some of them never leave entirely. We know this.
 
We know but choose to believe the best.
 
 
 
She is so worth the fight.
 
-------------------------------------------------------------
 
To all of you who have given to the Ewer family - Thank you.
 
Yesterday they passed court.
 
Jonathan is an orphan no longer.
 
 

They can't take him home this trip.
 
They have the 30 day wait and then cross the ocean one more time.
 
They are still not funded and so if you have not donated you have time!!
 
They are doing a quilt giveaway.
 
It's an Amish quilt - "Picnic Basket" - from Lancaster County, PA
 
It's 91 in. x 100 in. Spring/Summer colors.
 
Just $3.00 gets you an entry.
$10.00 gets you 4 entries.
$20.00 - 10 entries.
$30.00 - 15 entries.
$40.00 - 25 entries.
$50.00 - 50 entries.
 
 
 
 
 
Donate and then e-mail your receipt to Dana - ewerbushkill1@msn.com so you can be entered to win!!
 
The family needs their FSP to reach $14,168.00 to be fully funded.
 

Saturday, May 5, 2018

Caged Boys. Caged Men.


His Reece's Rainbow name is Jonathan.
 

I saw him three years ago.  He was standing behind a fence reaching out his hand for me to touch.  Other boys were crowded along the fence reaching for me too.  The yard they were standing in reminded me of a cattle yard.
 
 
A cattle yard to contain men and boys. There is an overhang in the back with benches but other than that - nothing. Inside they stand or sit or walk or rock or wander. Penned in behind a fence to keep them contained. Safe. Yet imprisoned. I only saw him for a brief moment. Jonathan.
 
 
A beautiful boy with a beautiful smile.
 
He has a family.
 
They met him.
 
They want him.
 
They traveled a little over two weeks ago to have court. They practiced together the YES they would say to the judge. They were so ready.
 
The judge was sick.
 
 
 
Court was canceled.
 
Two more weeks.
 
They would have to wait two more weeks. Two weeks they couldn't wait out in country because they hadn't planned on two weeks away.
 
 
 
So they flew home. To wait. So they can cross the ocean again to stand and say YES.
 
They are short funds but not love for a little boy named Jonathan who spends his days pacing around a cattle yard with other boys who also pace the yard.
 
 
They are willing to cross the ocean again and again just to bring him home.
 
They are doing a quilt giveaway. So far only a few people have entered so the odds are HUGE!
 
It's an Amish quilt - "Picnic Basket" - from Lancaster County, PA
 
It's 91 in. x 100 in. Spring/Summer colors.
 
Just $3.00 gets you an entry.
$10.00 gets you 4 entries.
$20.00 - 10 entries.
$30.00 - 15 entries.
$40.00 - 25 entries.
$50.00 - 50 entries.
 
 
 
He's one boy among so many in that place. But he has a gift. He has a chance to come out from behind that fence.
 
Please, let's help this family. Every little bit helps. $3.00. $50.00. $100.00. Whatever you can give.
 
I've seen Jonathan's world.
 

 
It's sad. It is no place for a child to grow up. Caged boys. Caged men.
 
Break our hearts, Lord, for the things that break yours!
 
 
Donate and then e-mail your receipt to Dana - ewerbushkill1@msn.com so you can be entered to win!!
 
The family needs their FSP to reach $14,168.00 to be fully funded.
 
 

Wednesday, May 2, 2018

Build Your Bundle!

Each year I take a moment on this blog to share about the Build Your Bundle Sale.
I do it because we have some of our BiblioPlan products in the sale and it is a great way to get some amazing homeschooling material AND material for the teachers in the classroom at a very low cost.
I can't share what is in the sale but I can tell you that by clicking and looking now you can enter in to win some prizes and can get a coupon code when the sale starts... So read below and go check out the sale!!
----------------------------------------------------



We are so excited for the upcoming 5th annual Build Your Bundle Sale that starts next week on 5/7/18. You can save up to 95% on 20 individual bundles for your home and school. Sweeten the deal by signing up for a coupon code that you can use when the sale starts!

When you sign up for the coupon code, you will also get instant access to the FREE Homeschool Portfolio Pack!



The homeschool year is filled with accomplishments and events you and your kids will want to cherish for years to come. Whether you need to meet your state law or you want to keep the precious memories of your child’s homeschool year, a homeschool portfolio will keep it all organized and decluttered.

The Homeschool Portfolio will not only serve as a scrapbook of your child’s year it provides practical sheets and a place to record goals for the next school year.

Pages Include:
  • About Me
  • Attendance Sheet
  • Basic Daily Schedule
  • Extra Curricular Activities Sheet
  • Curriculum and Resources List
  • Book Log
  • Goals
  • Field Trip Log
  • Report Card
  • Subject Evaluation
  • Subject Binder Divider Sheets
Enter to win a HUGE giveaway, grab a FREEBIE & coupon code

CLICK HERE TO CHECK OUT THE SALE 
 
ENJOY!!
 

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

PLEASE DON'T FEED THE BEAR!

 
 
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.
 
Gone.
 
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!

Monday, March 26, 2018

Transformation

Three months on hard, mind-altering drugs made for difficult relations in this family.
 
How can you even consider playing with someone who acts like a hostile drunk?
 
 
Four weeks off hard, mind-altering drugs makes for a much more pleasant little sister.

 
It means her brothers actually want to play with her.


It's only been in the last few days that they have realized that she's not going to bite their heads off and is rather a fun companion.

 
The sounds of laughter and seeing the three littles truly enjoying each other has been a pleasant gift these last few days.

 
We are loving the transformation.


 
Laughter is good medicine!
 
 
 

Thursday, March 22, 2018

Ketosis!

Three weeks ago we made the decision to put Mary on the Ketogenic diet. It's a medical diet and needs to be monitored carefully.  To do the full Keto diet a child needs to be admitted to the hospital.
 
 
 
We knew this and did not try to start her on the diet but we did test foods with her over the past few weeks. We discovered that our little girl LOVES all the fats required. She is a lover of mayonnaise and sour cream and ranch dressing. She LOVES drinking the heavy cream!
 
So over the last few weeks we have been giving her the fats and cutting her carbs.
 
When we arrived at the hospital... within a day at the hospital little girl was in mild ketosis. By Wednesday she was in full ketosis.
 
WOO HOO!!
 
She gets the reward for getting into full ketosis the fastest!! 
 
They have never had a child who loves mayonnaise as much as she does.
 
Her blood levels have been excellent and she is tolerating the full diet well.

 
 
That means that we get to go home today!!!
 
WOO HOO!!!
 
It has not been a bad experience this time around. Little girl has been amazing and yesterday the little boys had off from school because of snow, so they spent the day hanging out at the hospital.
 
 
But sleeping at the hospital isn't the easiest (for me) and little girl and I really really want to go home!!
 


 
I won't lie. This diet is hard. Even though she loves the fats on the diet - she is not a fan of the limited choices she is being given. No matter how much you dress up what is on her plate - the reality for her is that she can't eat her favorite foods. And the harder reality is that she has to see us eating foods she cannot eat.
 
On Wednesdays, volunteers provide free lunch for the families on this floor. It is a HUGE blessing because buying food at the cafeteria is expensive and having both boys here yesterday was going to cost us a pretty penny.  So I took the boys down and filled up a tray full of sandwiches and chips and cookies. It broke my heart knowing I could not give the same food to my little one. While she dipped her chicken and beans in mayonnaise with little gusto (she loved the mayo but was not a fan of the chicken and beans), they chowed down on sandwiches and chips and cookies. She cried. Rob and I wanted to cry with her.
 
It's not realistic to shield her. They need to eat. They can't hide their food from her and we don't want to feed her separately from the family. We will absolutely do our best when we are at home to make her choices of food as enticing as we can. But she can't eat many of the same foods as the rest of the family. It's a cross she will have to bear. It hurts our hearts to deny her food.
 
But seizure free is our goal. And this plus the CBD oil is our best hope.
 
It isn't going to be easy but we are committed.
 

 
We are heading home and gearing up for the long haul.
 
We have been told that we may not see any results from the diet for at least 3 months and to expect to be on it for 2 years.
 
The long haul!!
 
Step one is over.
 
Ketosis.
 
Thank you, Jesus!
 

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