Tuesday, November 22nd:
DADDY arrived...the world is now all right!  There have been 100 "when is daddy coming" since we arrived in Boston last Friday.  We had a sweet night together before her BIG day tomorrow.  Daddy just knows how to get the giggles.  A little recap of her night at the hospital and today.  Our night nurse was the most amazing.  So kind and gentle with her.  Kylie slept well despite the hourly vital check.  Are they really necessary???  Myself not so much.  Anyone who knows me well, knows my emotional state the next day after losing a night of sleep.  Not so pretty!  Kylie has been up and down today emotionally and in discomfort from the cardiac cath.  Tomorrow is the BIG day and she is scheduled for 8 am surgery.  Kylie knows what is coming, and is anxious.  We are upfront and honest with her.  We have a BIG God who will be with the surgeon, Kylie, and us as we travel through this. Thanks again for your prayers, encouragement, and so many kind gestures from so many!  We feel incredible loved and blessed to have you all walking this journey with us.  Love to each of you!

Best part of the day for Kylie and me.

Nurse Kylie works on Wesley her Teddy Bear.

So many have blessed us in so many ways.  This was a wonderful treat today.

This young group of financial professionals gave their time to us tonight!

Monday, November 21, 2016
Today's testing was a bit rough.  We got to the hospital a little after 7am.  This is now the 4th time she has been put to sleep since February.  Each time it gets a little rougher.  After 5 of us held her down to get the Happy Juice as they call it in her they went to option number 2.   Option number 2 was still unpleasant but it was fast.  No Happy Juice on Wednesday morning before surgery.  We will go right to option 2. The heart MRI and cardiac cath both went well.  They did have to use one coil.  Which in very simple terms a plug to stop a leak.  Don't repeat that to any medical professional!  Since they used a coil that means an over night hospital stay to monitor her.  She started coming out of her happy sleep around 3pm and was not so happy.  Poor thing couldn't keep anything down till about 8:30.  But then we saw Smiley Kylie!  It wasn't till 11pm that the blood work was drawn and the last chest xray was taken.  Tomorrow morning we will meet Dr. del Nido to get the final approval.  We are hoping tomorrow all looks well and we are out by lunch to enjoy an afternoon and evening with daddy.  She is so happy he is coming tomorrow.

Praises:
finding a wonderful church yesterday to worship with fellow believers
sweet nurses today
kind heart doctor who placed the coil and took lots of time with us looking at the MRI
Kylie was able to keep gold fish, orange juice, and ice cream down tonight
a wonderful grandma to make life easier while I'm here
and another wonderful grandma helping the family at home

Prayer requests:
all tests look good and surgery is a go for Wednesday
we get to leave the hospital tomorrow for a couple hours
good health and steady hands for our surgeon Wednesday
safe travels for Lee tomorrow

Thanks to each of you who are supporting us in prayer, encouraging texts, and sending cards.

Meal schedule at the Yawkey house.  It is such a blessing getting some home cooked meals.

And no wait at a restaurant.  Tonight I was able to zip out for 30 mins to grab some food. 

Visit to New England aquarium, a special treat we did yesterday.

The look after a turtle 3x her size swam past the window.

Hand puppets were a huge success.  Lots of giggles from Kylie!

Kylie coming out of anesthesia today.

Finally after a long day we saw Smiley Kylie!

Saturday, November 19, 2016  So I've heard the second day after you lose a nights sleep is when it hits you.  Well I've been hit!  Not much to say more than it was a good day of free time.  We just laughed, shopped, did school, and enjoyed Kylie.  We are shocked there are still trees with leaves.  It was a beautiful day for walking. I'll let the pictures do the rest of the talking...

Friday, November 18th, 2016
BACK TO BOSTON..so here goes round two. Many emotions, happy this will be behind us shortly, fear of an intense surgery, and yet peace knowing their is an army of prayer warriors around the country lifting our little girl up to the Holy One!
We left Quarryville at 1:55am so Grandma and Kyle are snoring in the bed next to me.  Already we are prayers, and God is answering them.
Praises:
- safe trip and travel time 6.5 hours, Kylie was either sleeping or singing, never stopped till the hospital
- productive day echo, xrays, ekg, blood work, and at least three meetings with hospital staff
- happy and healthy little girl this week (she kept saying just one more BIG surgery mom, right)

Prayer Requests:
- continued good health for Kylie/and good health for the surgeon Dr. del Nido
- a peace for the cardiac cath and MRI on Monday
- that we can be a light to the people we come in contact with

I have to share this one story from today.  We had her blood work done near the beginning of the day. There was screaming and two of us holding her down.  We were very disappointed to learn later in the day they did not get enough so back to the lab we went.  I quickly ask for prayer support to the last three people I had been texting.  As soon as we got into the lab she knew what was coming and started crying.  I was praying and trying to talk her through it.  After 15 minutes she stopped crying and said ok.  This has never happened in the past.  She patiently waited her turn we walked in and she put her arm out.  There was still tears as they searched for a vein but no struggles.  God clearly heard our cries and answered them.

A few pictures from the day...

Mrs. Ecker & Mrs. Miller see I'm doing my home work!  

A real trooper.

They look like partners in crime.

The beautiful renovations that are completed this trip.

Telling Kylie quite a few times through out the day you can pick a couple care packages tonight got her through and gave her something to look forward to.  She was all smiles.  What a blessing to family and friends for blessing her in this way.  Cards last trip were a real blessing.  When she was too sick to even watch tv she wanted me to open cards in bed with her.  If you send a card a picture of you would be great so she knows who the card came from.

Yawkey House

c/o Kylie Kauffman

241 Kent Street

Brookline, MA  02446

HOME SWEET HOME!
We arrived home last night right before bed.  Going through NY city at 5 pm on a Friday is not recommended!  But thankful for a safe trip.  After lots of hugs, kisses, and catching up with kids we crawled into bed.  The silence in my bedroom scared me for a second and then I sighed happily.
Today Kylie was very mellow and tired but was so happy to be home.  The last 17 days have been hard and exhausting, but we felt the presence of the Lord in a beautiful way.  And it has given us the courage and strength to face the next surgery for phase two.  Again thanks to each of you who have supported us in so many ways!  We are blessed to have you journey with us!

Big Bro and little sis...

Jesse and Shira kisses...

Visit and lunch from Bella and Hailey.

ANSWERED PRAYERS:
- Kylie's chest x-ray looked great this morning.
- Today she started eating more.
- She is walking unassisted.
- If chest x-ray looks good in the morning...we are headed home!

Spent a lot of time in the play room doing crafts.

Kylie's wall of cards...thanks so much to you all!

Thanks Faith Church

It was a good day, but we are starting to go stir crazy so time to go home! 

Pictures are worth a thousand words...
(ok so I'm adding a few words)

The clown show we took Kylie to yesterday to try and get her through a rough day.

Kate and I had a date to the movies, after we did the Kylie day shift.

We love our therapy musicians!

View from our hospital room.  Lee and Kate are waving to Kylie from the corner of the parking garage roof.  We wondered what they were up to, when they left with big grins.  Kylie loved it!

Beautiful day for a walk in the Hospital garden.

Loving our time going through cards from Quarryville Elementary and Preschool.  Even when Kylie was too sick to watch tv she wanted me to open her mail and read it to her.  What a blessing from so many family and friends!

Thanks to Brenda for the diet turkey hill ice tea!  Very special treat for the day!

lots of echos and chest xrays

We love Liz our child life specialist.

As soon as dad came today Kylie was all smiles.  She was sad to see Grandma and Kate leave for PA.

sister time

PRAISES:

- We had the best day yet.  Kylie walked, giggled, ate, and talked.

- Kind nurses and hospital staff.

- New IV put in last night, was done amazingly fast with little pain to Kylie.

- Lungs sounded better tonight.

- Even in my sleep deprived state I have had the energy I've needed to love on Kylie.

- Yackey House has been a total blessing.

- Everyone at home lifting us up in prayer, running Kate (Shira), feeding my dogs (Cody), filling in 

for me at work (Laura), watching Kate (Joy, Julie, Marv  & Bethany) and so much more.

PRAYER REQUEST:

- check xray tomorrow will  show little fluid and the partial collapsed lung will be normal

- Kylie's appetite will return.

- we can come HOME...today is two weeks of being away

* A shout out to my mom at home feeding my family on numerous occasions.  Love you mom!