Monday, January 23, 2012

Home Sweet Home

Home Sweet Home:

Well, to get everyone caught up with the Stewart Family.  2012 has started with a BANG!  Since we decided to actively look for a permanent place to live in the Dallas area, and transition our family to living in Dallas, we have been looking for a house in the North Dallas area (specifically Frisco).  House shopping is a lot of fun, but a lot of work, so things have been pretty busy around here.  Scott and I are both preparing for BIG tests as well.  Scott is studying to take his Pharmacy Texas law test (this FRIDAY) and I am prepping (once again) to take my PhD quals in April.  This means that we are both up pretty late each night studying.

Speaking of being up late, Emma has decided that she wants to be a night owl.  We put her to bed around 8-9pm every night.  She goes to sleep fairly quickly and sleeps quite soundly until 1am then the party begins.  At 1am is when Scott and I typically go to bed and we start one of her feeds at that time and give her a final dose of diuretics.  Scott and I are typically drifting off into what we hope will a restful night of sleep when the gagging/coughing begins.  Emma has learned that coughing/gagging gets her attention.  The problem is that she actually makes herself throw up and since aspiration  = hospital stay, we have to address this issue when it occurs.  Along with wanting attention, Emma is also teething.  Now please remember that Em has had 3 open heart surgeries; however, when Emma is teething, she runs a low grade fever, screams, pulls at her mouth and is a GROUCHY BEAR.  Once Emma wakes up, she is pretty much awake from 1am to 10am when she takes her first nap.  This means that Scott and I are NOT getting any sleep and are slightly exhausted.  This is proving to be a “semi-normal” baby thing that we are trying to tackle with our not so “normal” baby.  And who can resist her big smile and one of her new tricks (reaching up for us when she sees us so we will pick her up). 

Besides not sleeping, Emma is doing well.  She has begun all of her home therapies again and is already beginning to gain muscle and strength that she lost while being in the hospital for so long.  We continue to see the cardiologist once a week to check her blood work and X-ray.  We are trying to wean Emma off of her oxygen.  She is currently on 1/16 of a liter (basically a little whiff).  We hope we can get her totally off of O2, but are being cautiously optimistic, as she does not have full use of two lungs. 

Obviously it is still VIRAL season.  We love seeing people and having Emma showered with so much “lovin” but please remember that if you are sick or have even around people who are sick STAY AWAY.   The smallest respiratory infection will put Emma in the hospital.  Also, if you want to see her, you MUST have your flu shot.

Thank you again for all of your love, support, prayers, and encouragement.  Please continue to remember us in your prayers as we transition our lives to Texas and to keep Emma safe and healthy as she grows and develops.  Also, please remember our heart buddies in your prayers.

 It is so hard to describe to people what it is like to live a daily life with a child with special needs (both health and development).   We literally live day to day.  The small annoyances are TRULY INSIGNIFICANT.  Please give the healthy kids in your life an extra hug and kiss today.  None of us are guaranteed tomorrow, so live today with no regrets.  Thank God for all of the blessings, both big and small  in your lives and try to make a difference for HIM today.

God is Good all the Time….All the Time, God is Good!

Ringing in the New Year with Stephanie and Aaron (and Baxter too)

Emma playing outside on a beautiful today!

We love the natural Vitamin D

Sassy Pants (one of my new fav pics)

Crazy hair baby!  She is learning to enjoy her new bath seat!

Daddy made a tent in the living room for a slumber party!

Look Gramma it's a leaf!


  1. Nana Jana is proud of all the progress that you are making, Miss Emma! You work so hard to learn your skills and are such a Sweetheart! You are so blessed to have a Daddy and Mommy who realize the importance of each day you spend together! Wouldn't the world be a wonderful place if every baby received the amount of love that you do?! We consider you a precious gift from God, sweet Lil Warrior Princess, and thank Him for every smile and every second you share with us! God bless all three of you; we love you all so very much!
    Hugs from Nana, Papa, and Aunt Stacey

  2. My fav is the outdoor pic! Yaaaay! Praying for her to sleep better. Love you guys!!

  3. FROM: Rob and Kathy Gandy
    For Emma's family:


    You weren’t like other children,
    And God was well aware,
    You’d need a caring family,
    With love enough to share.
    And so He sent you to us,
    And much to our surprise,
    You haven’t been a challenge,
    But a blessing in disguise.
    Your winning smiles and laughter,
    The pleasures you impart,
    Far outweigh your special needs,
    And melt the coldest heart.
    We’re proud that we’ve been chosen,
    To help you learn and grow,
    The joy that you have brought us,
    Is more than you can know.
    A precious gift from Heaven,
    A treasure from above,
    A child who’s taught us many things,
    But most of all- “Real Love”

  4. Sarah,
    My husband and I have come to know your story through following Praying for Haven Grace on Facebook. Please know that we are praying for your family and your sweet baby girl. We worship in Plano at Christ United Methodist Church and would love to invite you to worship with us sometime. Our church's website is if you would like to learn more about the missions and ministry of the church. We have found a wonderful community (30s and 40s) within our Sunday School class.

    If you have any questions, please don't hesitate to email me at

    Bill and Kelly Vaughan

  5. The past few days I have read every single post since your first post in August 2010. I find myself watching the videos often and have come to love that sweet little Emma of yalls. Your strength and positive outlook are beyond inspirational, and your continued faith and praise of God just blow me away. I am praying for Emma and your family and can't wait to watch her grow up through this blog. Sidenote: I earned my Master's from the University of Texas so I have only one more thing to say: Hook 'em Horns! ;)