Thursday, April 30, 2015

Endoscopy

Last Friday Abigail went to the hospital for an endoscopy.  On Instagram I wrote that day

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I wake her up way too early.  It's still dark. But we have an appointment at the hospital.  Daddy helps me carry her to the car still cuddly from her bed.  On the drive she's quiet.  And then she says, "mama, look at the sky.  It's orange and pink.  God made it sooooo beautiful..."  This is her "too many to count" mornings like this, managing this disease.  My hands shake just a little on mornings like these; my breathing feels quick and too shallow.  She acts like it's just a normal Friday... And in some ways it is.

#wantingacure

#eosinophilicesophogitis  

A little groggy but Grandpa came this time and that makes waking up a whole lot nicer

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Wednesday, April 29, 2015

All by 8:22

I'm not a superhero.. I'm just a morning person.

I've gotta laugh at what I did all before bringing Abigail to school and off to teaching myself.

~ got up at 4:20

~ 45 minutes with God

~ 20 minutes quick exercise

~ made two beds (I'm picky about how they look. To me the bed is the focal point in the room and I like it "just so" so I do it myself)

~ put clean sheets on the third bed

~ did 3 loads of laundry and had it all folded and ready to be put away later, and made my ironing pile for later in the evening.

~ deep cleaned 2 bathrooms, quick cleaned the other

~ took out my ingredients for dinner

~ started a grocery list

~ added ice to their lunchboxes and snacks and packed their backpacks with love

~ put water in her thermos so it would be icy cold all day and added it to her backpack

~ mixed Elecare (like baby formula) a food that Abigail is on and added 2 thermos containers to her special Elecare bag.. shouldve done that last night.. now it's not cold enough

~ changed over bath towels

~ emptied bathroom garbages

~ washed the kitchen table after they ate and turned on the dishwasher

~ got yucky medicine in Abigail and then cleaned up her throw up after she couldn't keep it down

~ sent Scott to his school with a Bible verse tucked in his wallet

~ prayed with the girls before they left

~ put on my teacher clothes and sang in the car with Abigail on the way

~ I'm sure I forgot just a few things

I love my mornings!

I wanted to write all that because I don't want to forget just how blessed I am to be able to do all of that, have a home, and have "people" to take care of!

(random picture because what's a post without a picture?)

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Tuesday, April 28, 2015

Lemonade Stand

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(I posted on facebook) I am still saying tank you with each breath. Thank you to everyone for supporting a cause no one had ever heard of. Thank you... we are overwhelmed. One day, there will be a cure for pain when she eats ... and every other child. And while we wait I am so grateful for believing with us that it will happen. God bless you all!

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"auntie" Maribeth and "uncle" Todd are Abigail's Godparents. Little Maddie in that photo is our Goddaughter. And their grandparents came too!

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God sisters...

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Cousin fun... we are so blessed to have cousins close by!

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School friends

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And our college friends surprised us and brought their family!

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As any Mama can tell you, there's no greater pain in life than seeing your child suffering from pain; physical or emotional. And this invisible disease brings stress to the the family dealing with it. (I am supposed to go on a big road trip this summer with my family and I literally break out into a cold sweat every day just thinking about it and how I can do it without lugging my frig, stove, and microwave) But God is so good. He brings grace to our hearts as we navigate through these waters. We learn each day to trust Him and know that He has us in the palm of His hands.

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Ephesians 3:20 Now to him who is able to do immeasurably more than all we ask or imagine, according to HIS POWER that is at work within us. Amen!

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Anna, we are over-the-moon proud of you!

Monday, April 27, 2015

Overwhelmed

This

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happened on Saturday.

And we had no idea how overwhelmed we'd be.

It started from the heart of Anna wanting to do something for her sister and all children with this disease.

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She wrote a letter and made a flyer.

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We sent a few out to family, friends, and neighbors.

And the word spread.

It moved so quickly that I never finished decorating or setting up.

And Anna... my eleven year old Anna raised over $600 for APHED.

And we are overwhelmed.

To the strangers that walked by and said "no change" with a $20 bill.

To the teacher at my school that wrote a check that took my breath away and brought me to tears,

To friends who live so far who reached out,

To college friends who drove almost an hour and walked back into my life

To the family that traveled to China with us all those years ago when we adopted Anna,

To close family who I knew would be there,

To church friends who really ARE family,

For their parents for coming,

For the little league kids,

For the 95 year old neighbor,

For cousins, aunts and uncles,

For grandparents who came sick,

For everyone in between... we are overwhelmed.  Truly overwhelmed.


Friday, April 24, 2015

NYC in the Morning

I start singing this song as we get closer to New York. It drives my family crazy but I love Sinatra.

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Heading out for the day... pretending we are 'regular' guests of this hotel.

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And then... American Girl. There is nothing like the NYC store and there is nothing like being there when it opens and you have the whole store to yourself.

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You should see this place at Christmas... there's a line to just head in these doors... total madness. If you're ever in NYC in December... skip this ... trust me!

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Yup... I'm a gonner... I love love love Bitty Baby! (and that my baby love bitty baby) I think my favorite photo from our weekend.

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And we couldn't leave without seeing this.

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In Rockefeller Center looking up. Saks Fifth Avenue is right behind Anna. Side story... My dad loves NYC. When I was a little girl and we went at Christmastime he took my brothers and me into Sax (whoa... amazing... go there someday) to pick out something to wear at Christmas. I remember just what I picked out. And I even remember that my brothers didn't care about anything from Sax but my Mom helped them pick out a sweater to wear on Christmas Eve)

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Saint Patrick's Cathedral

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Pretty impressive.

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And last but not least. Scott took this with his iphone and I have to put it because it's HIS favorite picture of the whole trip. And that of course makes my heart smile.

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Thursday, April 23, 2015

Tea at the Plaza... more

So the walls were pink, the ceiling was pink, the light bulbs were pink too I think.  So that is why we look pink!

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After the food there was letter writing to Eloise.

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And a story time. and gift bags.

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After the leaving that special space we headed back upstairs where the "real" tea room was. I peeked. And this famous painting of Eloise right there in the lobby.  (I didn't tell her to stand like that... I just noticed now... just like Eloise)

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The Plaza from across the street.

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And after the Plaza we walked right over the the amazing toy store... FAO Schwarz

Do ya think she was excited to bring her puppy "New York City" back to the store she found him?

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It's pretty awesome in there!

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And then through the iphone... we headed back to our hotel, changed and went out for a late burger at Rockefeller Center.

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  Being in NYC at night is super fun and exciting!  I love staying over!  Yup... a pretty good day!



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