Sunday, January 29, 2012

Emma's Story Updated

For those who would like a brief overview of Emma's journey, I updated her About Emma page.....After a few hours of think I am caught up.

Cousin Time!

Yes, mom that is icing on my face!

Giving Coen her..."don't touch my toys look"

Coen loved his cupcake.

Aunt Randi giving Emma her ice for her sore teeth.

Friday, January 27, 2012

A Small Bump in the Road

Let me begin by saying that we are LOVING having Emma home.  She is truly growing and developing every day.  She seems to be getting stronger and is wanting to put some weight on her legs finally.

We see the cardiologist once a week to track Emma's labs and x-rays.  We are trying to get Emma on a lower diuretic regimen, so we can lower her supplemental potassium and calcium.  She has been tolerating these weans and her x-ray has actually continued to look good.  Since her x-ray has looked good, we having been working her oxygen down.  She can even be OFF oxygen for periods of time!  YAY EMMA!

So for the not so good news...

At today's cardiologist appointment, Emma's heart echo showed a minimal decrease in RV (right ventricular)  function.  Emma's cardiologist was not too concerned since the rest of the echo looked fine, Emma looks so good, and her x-ray is looking good.  He is starting her on some Enalepril to hopefully help with her higher blood pressure (which had not been high) which should help with the after load of her heart.

In saying all of this, the echo today is one "snapshot" of her heart, so we will be getting another echo in a couple of weeks to look at her heart again.  Obviously, we would like to see her heart function return to its baseline.

We ask for your prayers.  Please pray that Emma's heart function will return to normal and that this is one "bump" that we do not have to "go over" again.

God is Good!  All the Time!

Please also remember Emma's heart buddies in your prayers.  We have several little friends who are having a tough time right now.

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!