Welcome to the HeartLand “Amusement” Park: Wear RED

You officially have an all month pass to one of the craziest rides in the country....The HeartLand "Amusement" Park.... So, buckle your safety belts and hang on tight. 

I will begin a month long series tomorrow on CHDs (Congenital Heart Defects).  I ask you to join me as I do my best to give you an insight into our lives, support programs, lives of others, facts and statistics, etc.

Also, PLEASE WEAR RED tomorrow, February 1st,  for Emma and her Heart Buddies.  If you wouldn't mind, send me a picture of you wearing RED to s.stewart1114@yahoo.com so I can do a collage for Emma.  

Where We Began!

Will You Wear RED for Team Emma?

My Heart Hero Today

Welcome to the HeartLand “Amusement” Park: AND WEAR RED

Welcome to the HeartLand “Amusement” Park:

You officially have an all month pass to one of the craziestrides in the country.  So, buckleyour safety belts and hang on tight. 

This was an amusement park that I was not searching for inthe beginning.  Don’t get me wrong,I enjoy a little adventure in my life. In fact, I tend to be a thrill seeker, but when I learned about thisspecific “thrill ride” I was actually scared, unsure, and extremely nervous.  The thing about this amusement park andparticular ride (The Horrendous Half a Heart) is that once I made the choice toenter the theme park, there was no turning back.  I sat in my seat and listened as the instructions came overthe loud speaker.  “Ladies andGentlemen, welcome to the Horrendous Half a Heart ride:  Warning you may experience loss ofcontrol, unspeakable fear, nausea, and heart palpitations.  However, you will probably think thisis the BEST RIDE you have ever been on despite all the crazy twists andturns." 

Like I said before, I enjoy thrill rides, but this particularone left that sickening feeling in the pit of my stomach…..you know thatfeeling you get when the unknown is literally around the corner (or up ahill).  

The ride inspectors were doingtheir final checks when I noticed a sign in the corner.  The sign read “1 in 100” enter thisamusement park, but only “1 in 4, 344” will ride this ride.  That did not really make me feelbetter.  I looked around at thepeople sitting in the rollercoaster cars around me and we all had same uncertainlook on our faces.  It was nice toknow that I was not alone on this ride, but for now, most of us were keeping toourselves.  

The next thing I know, the inspectors have found aproblem.  The problem is calledRAS/IAS.  This ride complicationeffects around 260 of us.  We wereasked to exit to the left and get on the other car.  Once seated we were told that this ride was going to be alot crazier than our first.  Beprepared to experience loss of oxygen, unstable conditions, longer wait times,and all the other warnings from the original ride.  Well great, I guess there is no turning around now. 

I hear the gears turning, the cars slowing beginleaving.  I can hear the click,click, click of the gears as we head up the first big hill.  None of us know what is over that hill,but we are all on this “ride of our lives” together.  I look over at Scott, grab his hand and say a prayer.      

Please join me this month as we recognize Congenital Heart Defect Awareness, and join me as I take you through the different rides andattractions of this special Amusement park.  My posts will vary from the literal to the figurative, but Ihope you will accept the “free ticket” and learn about living a life that isaffected by a CHD.

As always,

God is Good!  Allthe time!  God is Good!

Sarah 

Also, PLEASE WEAR RED today for Emma and her Heart Buddies.  If you wouldn't mind, send me a picture of you wearing RED to s.stewart1114@yahoo.com so I can do a collage for Emma.  

Wear RED Friday :)

Will you wear RED on Friday for Emma?

Please do....

Emma and her Heart Buddies appreciate your support!

It Was Something More.......RSV

Emma tested positive for RSV. We are starting a breathing treatment and monitoring oxygen levels at home for now. She is stable and dealing with it well at this point.  However, her oxygen levels have taken a hit, so she is on continuous oxygen at this point.  The coughing is also keeping her up at night and causing her to not want to eat :(

Please keep us in your prayers. It would be great to weather this out at home. It just makes me glad that we fought so hard for the Synagis which will reduce the harshness of the virus.

Also, I want to let everyone know how much we truly appreciate all of your support.  Whether that support is in the form of prayer (most important), calls, messages, tangible items, etc.  I have tried to keep track and personally thank those who have sent things to Emma and our Mended Little Hearts group.  If I have accidentally forgot, I am truly sorry.  Also, we were having certain mail items stolen by our mailman for awhile, so your thank you could've been taken!  Anyways, we sincerely appreciate all of our wonderful supporters.

BIG HEART HUGS,

The Stewart Family

Teething or Something More??

Recently, Emma has been running low grade (for the most part) fevers.  Most of the time the fevers occur around bedtime.  What we do know, is that Emma is cutting her two year molars.  We know this can cause low grade fevers, fussiness, pain, etc.  However, over the last 24 hours, Emma has developed a small cough, runny nose (mostly clear), and a slightly higher fever.  We have been in touch with her pediatrician and the consensus is that it would be better to keep her out of the peds office today.  If she runs a fever today or other symptoms get worse we will see her pediatrician first thing in the morning.  

In other news, Emma continues to love her standing frame.  Her therapists have commented how much more active and curious she is when playing in it.  It is great to see her exploring more.  She is keeping her legs straighter when we pick her up, but is not putting tons of weight in her legs yet.  We are hoping that will come the longer she spends in her stander.  

I will try to do a longer update later, but Emma is needing her mom today so until later....

God is Good!  All the Time!  God is Good!

Sarah 

Christmas 2012 in Review

This Christmas was one for the record books.  First of all, it was the first one for Emma to be out of the hospital!  That in and of itself was special.  We did our best to begin family traditions for just the three of us.  We picked out a "real" Christmas tree together, went on a carriage ride to look at lights, decorated our upstairs "family ornament" tree, opened pjs, ordered in pizza, watched a Christmas movie, and read a Night Before Christmas on Christmas Eve, and spent Christmas morning opening gifts and being together and later that day "Friendsmas" with our neighbors eating many mini meals, watching movies, and enjoying the White Christmas.

The weekend before Christmas we went to Oklahoma for a whirlwind of family celebrations.  I got to hostess at Citizen's Bank for the first time in two years.  It was great to see everyone and visit with many familiar faces.  Emma got to meet Santa Clause and did so great!  We had "Christmas Eve" with my side of the family on Friday night.  It was great relaxing, eating appetizer-like foods, doing our traditional "Night Before Christmas" reenactment, and opening gifts.  We spent "Christmas Day" with Scott's side of  family.  It was nice all being together, opening gifts, relaxing, and relishing in the fact that none of us were hospitalized.  We spent Sunday afternoon at the Gerth's: eating, visiting, and catching up.  It was a great weekend and felt NORMAL!

Enjoy the Christmas 2012 Slideshow Video!

 

Bad Blogger Award Goes To. . . .

Hello, my name is Sarah and I have been a BAD BLOGGER!

If the first step is admitting you have a problem, then I just successfully completed the first step.  Blogging in the beginning was easy---after all, you have a lot of time when you are sitting in the hospital for months at a time.  I recognize that I have been terrible in keeping all of you FABULOUS FAITHFUL blog followers abreast with Emma's current successes, events, and medical status.  For that I am truly sorry.

As the new year is beginning, I am resolving to do a better job with posting.  Can each of you hold me to a once a week promise.  The posts might not necessarily be long and verbose; however, I hope that they will offer each and everyone of you a better insight into our daily lives---the lives of a family doing their best to live for God while raising a Sassy, Fun-loving, Half-a-Heart, Special Needs little girl.

As always, God is Good!  All the Time!  God is Good!

Sarah

Preview for next blog post: Christmas 2012 in Review!