When life handed me a Canadian Husband, Two Energetic Kids and a Dog with ADHD,
I made myself some Organized Chaos!

Thursday, November 29, 2012

The Butterfly Children



For the last month or so I have been following a facebook page of a family that has been going through something I can’t even wrap my mind around.  Here is the link of the page so you can check it out yourself.  http://www.facebook.com/SupportBabyEastonFriedel.  I do want to warn you the pictures on here are hard to see.  If you have a weak stomach at all please just read this blog. 

Here is a little bit of his story!  Easton was born August 23, 2012 with a rare disease called Epidermolysis Bullosa or EB.  Children with this disease are also known as butterfly children.  You will understand that the more you read. 

Wikipedia Definition:  Epidermolysis bullosa (EB) is an inherited connective tissue disease causing blisters in the skin and mucosal membranes, with an incidence of 1/50,000. Its severity ranges from mild to lethal. It is caused by a mutation in the integrin α6β4 cell adhesion molecule on either the alpha or beta subunit.  As a result, the skin is extremely fragile. Minor mechanical friction or trauma will separate the layers of the skin and form blisters. People with this condition have an increased risk of cancers of the skin, and many will eventually be diagnosed with it as a complication of the chronic damage done to the skin.

These children are called Butterfly Children because their skin is as delicate as a butterfly’s wing.  Easton has been in the hospital till just recently.  He is covered with DEEP, RED, OPEN wounds!  I feel horrible because I cringe seeing the pictures of him.  The pain this baby endures in unimaginable.  Then I think of his family.  The strength and courage they go through to just make it day to day.  Learning to change baby Easton’s dressings, cleaning him, managing his pain and all the extra daily duties they have had to learn because of this horrible disease.  I just remember seeing my little one fall and hurt himself for the first time and needing stitches how much my stomach and heart ached for him.  To have the strength and faith daily to be this baby’s strength is AMAZING to me! 

Easton has three brothers that have been through this ride with Easton.  These little boys have put on a brave face for their mom, dad and baby brother.  It is truly amazing to see how this family has taken to this disease and they won’t let it beat them. 

EB is HORRIBLE but on top of the pain both emotional and physical but that isn’t all.  This family is going to have to have to protect this child’s skin and that takes money.  EB patient’s medical supplies are over $10,000 a month.  Insurance pays for about $1,500 of it.   
As I type this I am also pleading to God for them to have a slight relief.  Being all home in one house is a huge relief but more relief and for God to bring peace in their hearts.  To bring relief to this little baby and to educate others on this disease so someone can find a cure.  May God bless this family with love and comfort.  

If you want to help children just like Easton you can go to http://thebutterflyfund.org/ and donate. There is also a way to donate on their facebook page.  But my number one request for this family and others going through the same thing, PRAY!  Pray hard, Pray Long, Pray Often!   

Monday, November 26, 2012

DIY Christmas Advent Calendar

Last year was my first year making an advent calendar for the boys.  This year I will do it a little different but I wanted to share this idea with all my mommy friends!  

It will look similar to Martha Stewart's idea...

adventcalendar-480-mld109268.jpg

Both of my kiddos will get one in their room.  Before I only had one and then it was always a fight to who was going to get to open it.  Each day they will open up an envelope and in the envelope there will be an "activity" for the day, a Christmas joke and a verse from the bible! Instead of each kid get the exact same thing in their envelopes I will give one child the Activity and Joke and then the other child the verse.  The next day I will switch it.  So they will be able to read it to each other and then take turns telling the joke!  Below is the what will be in each days envelopes.  Remember they are personalized to my kiddos schedules so you obviously will have to change them up a bit!  


December 1st
The last of the decorations need to be put up can you guess what it is??  Of course it the Christmas Tree!

Q. What kind of bird can write?
A. A pen-guin

During Elizabeth’s sixth month of pregnancy, God sent the angel Gabriel to a virgin girl who lived in Nazareth, a town in Galilee. She was engaged to marry a man named Joseph from the family of David. Her name was Mary. The angel came to her and said,
“Greetings! The Lord is with you; you are very special to him.”

 “Listen! You will become pregnant and have a baby boy. You will name him Jesus.
Luke 1:26-28 and 31

December 2nd

 Call Granny and Papa and sing them a Christmas Song.  Make sure your sing nice and loud to they can both hear! 

Q. What do you get if you cross Santa with a detective?
A. Santa Clues!

This is how the birth of Jesus the Messiah happened. His mother Mary was engaged to marry Joseph. But before they married, he learned that she was expecting a baby.
(She was pregnant by the power of the Holy Spirit.)

 Matthew 1:18

December 3rd  

Time to help decorate Hudson Elm. Be ready to make some ornaments at 6pm. 

Q. What did Adam say on the day before Christmas?
A. Its Christmas, Eve.

Then Mary said,
“I praise the Lord with all my heart.

 
    I am very happy because God is my Savior.
 I am not important,

    but he has shown his care for me, his lowly servant.
From now until the end of time,
    people will remember how much God blessed me.
 Yes, the Powerful One has done great things for me.

    His name is very holy.
 He always gives mercy

    to those who worship him.
 He reached out his arm and showed his power.

 He scattered those who are proud and think great things about themselves.
 He brought down rulers from their thrones

    and raised up the humble people.
 He filled the hungry with good things,

    but he sent the rich away with nothing.
 God has helped Israel—the people he chose to serve him.

    He did not forget his promise to give us his mercy.
 He has done what he promised to our ancestors,

    to Abraham and his children forever.”
Luke 1:46-55

December 4th

Do something nice for someone and then share what you did at dinner! Remember that today is a day of kindness but that doesn't mean tomorrow or the next can’t be a day you show someone kindness. 

Q. What is green, white, and red all over?
A. A sunburnt elf.

But after Joseph thought about this, an angel from the Lord came to him in a dream.
The angel said, “Joseph, son of David, don’t be afraid to accept Mary to be your wife.
The baby inside her is from the Holy Spirit.

Matthew 1:20

December 5th

 Elf a Neighbor.  Remember to ring the door bell and run fast.  Keep it a secret so they keep wondering who their special elf was at their door. 

Q. What is red, white and blue at Christmas time?.
A. A sad candy cane!

She will give birth to a son. You will name him Jesus.
Give him that name because he will save his people from their sins.”
Matthew 1:21

December 6th

 Lets watch some hockey tonight.  Heading to the Blaze Hockey Game and watching Skyler play a little too.  While you’re there tell someone a Christmas joke!

Q. Which of Santas reindeer has bad manners? -
A. Rude-alph! 

All this happened to make clear the full meaning of what the Lord said through the prophet: “The virgin will be pregnant and will give birth to a son.
They will name him Immanuel.”(Immanuel means “God with us.”)

Matthew 1:22-23

December 7th

 It is time to make something special for others.  Grab a snowflake and make it special. 

Q. Who says "Oh, Oh, Oh!"? 
A. Santa walking backwards!

But the Lord will still show you this sign:
The young woman is pregnant
    and will give birth to a son.
    She will name him Immanuel.
Isaiah 7:14

December 8th

Your Granny loves you so much and tonight is her night.  Lets put on some nice clothes, get a rose and go support her at the Eastview Christmas Music Program.

Q. What do you call a snowman in the summer? 
A. A puddle!

So Joseph left Nazareth, a town in Galilee, and went to the town of Bethlehem in Judea.
It was known as the town of David.
Joseph went there because he was from the family of David.

Luke 2:4

December 9th

Tanner strap on your skates and show us your skills!  But later call Uncle Kory, Shawn, Travis and Kyle and tell them a joke.  They may think your funny or they may think your goofy but putting a smile on their face is always a special gift. 

Q. What do snowmen eat for breakfast?
A. Frosted Flakes..

Joseph registered with Mary because she was engaged to marry him.
(She was now pregnant.)

Luke 2:5

December 10th

Make a list of 10 things you are grateful for.  Think hard and don’t forget how grateful mom and dad are to have you both as our sons! 

Q. Why is Santa so good at karate?
A. Because he has a black belt!

But you, Bethlehem Ephrathah,
    are the smallest town in Judah.
Your family is almost too small to count,
    but the “Ruler of Israel” will come from you to rule for me.
His beginnings are from ancient times,
    from long, long ago.
Micah 5:2

December 11th

Dance and sing today—Warm up for the Christmas Program.  Skyler’s Music Program is tonight.  Good luck Moose!  

Q. What do elves learn in school?
A. The elf-abet.

While Joseph and Mary were in Bethlehem,
the time came for her to have the baby.
 
She gave birth to her first son.
Luke 2:6-7a

December 12th

 I know you have a joke you can share with your Aunts.  So get them ready and call Aunt Jenna, Andrea, Sarah and Kim and tell them one that will make the laugh!

Q. What did the reindeer say when he saw an elf?
A. Nothing, reindeer can't talk.

She wrapped him up well and laid him in a box where cattle are fed.
She put him there because the guest room was full.

Luke 2:7b

December 13th

 Today is a day that Tanner gets to choose…think of a way to celebrate Christmas.  Remember we only have 12 more days till Christmas Day.   So what shall we do?

Q. Which elf was the best singer? 
A. ELFis Presley

This will happen when the special child is born.
God will give us a son who will be responsible for leading the people.
His name will be
“Wonderful Counselor,
Powerful God,
Father Who Lives Forever,
 Prince of Peace.”

Isaiah 9:6

December 14th

It may be winter and there may be snow but grab your suite and lets get ready to Swim!

Q. What did the cow get for Christmas?
A. A COWculator.

That night, some shepherds were out in the fields near Bethlehem watching their sheep. 
An angel of the Lord appeared to them,
and the glory of the Lord was shining around them.
The shepherds were very afraid.
 The angel said to them,
“Don’t be afraid. I have some very good news for you—
news that will make everyone happy.
 
Today your Savior was born in David’s town. He is the Messiah, the Lord.
Luke 2:8-11

December 15th

Uncle Travis’ Birthday is today!  Call and wish him a BIG HAPPY BIRTHDAY!! 

Q. Where do snowmen go to dance?
A. A Snow Ball!!

This is how you will know him:
You will find a baby wrapped in pieces of cloth and lying in a feeding box.”

Luke 2:12

December 16th

Tell a joke or sing a Christmas song whatever you choose call your Grandma and Grandpa and share your talent. 

Q. What do monkeys sing at Christmas?   
A. Jungle Bells, Jungle Bells

Then a huge army of angels from heaven joined the first angel,
and they were all praising God, saying,
“Praise God in heaven, and on earth let there be peace to the people who please him.”
Luke 2:13-14

December 17th

Remember how long you made your paper chain last year?  This year decorate your room with a paper chain! 

Knock, knock.                                                              
Who's there?
Doughnut
Doughnut who?
Doughnut open until Christmas Day!!
The angels left the shepherds and went back to heaven. The shepherds said to each other, “Let’s go to Bethlehem and see this great event the Lord has told us about.”
So they went running and found Mary and Joseph. And there was the baby, lying in the feeding box. When they saw the baby, they told what the angels said about this child.
 Everyone was surprised when they heard what the shepherds told them.
Luke 2:15-18

December 18th

Tanner got to choose something fun a few days ago but today Skyler gets to think long and hard of something we can do to celebrate a special holiday that is coming up so soon.  What shall we do? 

Q. What do you get if you cross an apple with a Christmas tree?
A. A pineapple!
Come, let us bow down and worship him!
    Let us kneel before the Lord who made us.
Psalm 95:6

December 19th

Do you think Memaw and Papa would like a song or a joke?   Think hard and then call them with a surprising call from their grandchildren. 

Q. Where does Santa hide his gift to Mrs. Claus.
A. The Clauset of course!
Mary continued to think about these things, trying to understand them. The shepherds went back to their sheep, praising God and thanking him for everything they had seen and heard. It was just as the angel had told them.
Jesus’ father and mother were amazed at what Simeon said about him. Then Simeon blessed them and said to Mary, “Many Jews will fall and many will rise because of this boy. He will be a sign from God that some will not accept. So the secret thoughts of many will be made known. And the things that happen will be painful for you—
like a sword cutting through your heart.”

Luke 2:19-20 and 33-35

December 20th

Make a gingerbread house get sticky and creative because we want to see your best work!

Q. What do snowmen eat for dinner?
A. Ham Br-r-r-r-r-gers!
When the baby was eight days old, he was circumcised, and he was named Jesus.
 This name was given by the angel before the baby began to grow inside Mary.

Luke 2:21

December 21st

Last day of school before your break.  Enjoy your Christmas Parties and tonight a Movie and Popcorn.

A. What did the snowgirl say to her favorite snowboy?
Q. I love you SNOW much!
The time came for Mary and Joseph to do the things the Law of Moses taught about being made pure. They brought Jesus to Jerusalem so that they could present him to the Lord.  It is written in the law of the Lord: “When a mother’s first baby is a boy, he shall be called ‘special for the Lord.’”  The law of the Lord also says that people must give a sacrifice: “You must sacrifice two doves or two young pigeons.” So Joseph and Mary went to Jerusalem to do this.
Luke 2:22-24

December 22nd

Visit a town with lots of things to do.  A building that hunters and fisherman love, maybe Santa will be there to give you a hug.  Then decorate the night with lights so bright!  Where are we going?  Think long and hard…

Q. What sort of ball doesn't bounce?
A. A snowball!
Jesus was born in the town of Bethlehem in Judea during the time when Herod was king.
After Jesus was born, some wise men from the east came to Jerusalem.

Matthew 2:1

December 23rd

The reason for the Christmas?  Not Santa or Present!  Go read the story of why we celebrate Christmas each and every year! 

Q. How do snowmen clean their teeth?
A. Ice Picks!
After the wise men heard the king, they left. They saw the same star they had seen in the east, and they followed it. The star went before them until it stopped above the place where the child was. They were very happy and excited to see the star.
Matthew 2:9-10

December 24th

Call Grandpa and wish him a HAPPY BIRTHDAY! Write your letter to Santa.  Get to bed early so he can get to work!!  But don’t forget those treats for Santa and his reindeer. 

Q. What is a good Holiday tip?
A. Never catch a snowflake with your tongue until all the birds have gone south for the winter. 

The wise men came to the house where the child was with his mother Mary.
They bowed down and worshiped him.
Then they opened the boxes of gifts they had brought for him.
They gave him treasures of gold, frankincense, and myrrh.

Matthew 2:11



ENJOY!!  Have a GREAT TUESDAY and Remember to check out
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