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!

New Medical Equipment

Standing Frame, Leg Braces, and TOT Collar

Medical Update Post

I have been a terrible blogger..........I sincerely apologize!  Maybe that will be one of my New Year's Resolution....ha ha!

Our last major update was late September, so I will do my best to update on all that happened since then....So get ready, hang on tight, put your reading glasses on. and HERE WE GO!

1. Emma's Medical Update:
• Nephrology (Kidney): 
• We got to the doctor's office and apparently her doctor was having some sort of pregnancy issues, and all of the other nephrologists were "too busy" to help.  Needless to say, we got nothing accomplished at that appointment.  The good news is that her last Kidney Sonogram showed that she passed a stone and only has one left.



Waiting on the Nephrologist

• 
  
• Opthalmology
• We got Emma into a new Ophthalmologist.  He is wonderful, and to top it off, he is friend's with Emma's surgeon.  Emma's strabismus (eye pulling in) is still bad, but her nyastagmus (shaking) is almost resolved.  Emma also has some mild near sightedness but nothing to address at his point in time.  We are patching again for her strabismus and if it is not any better in a year, Emma will need surgery to correct it.  



New Ophthalmologist Office

• 
  
• Cardiology
• We got approved for Emma's synagis (protection against RSV).  Scott, her cardiologist, and I spent hours on the phone with the insurance companies to get this approved.  It was no easy task as Emma is "over the age limit", but this Mom does not take no for an answer.  Emma will get these shots every month through viral season.  As far a cardiac wise, Emma seems to be stable.  Her labs look good and we have been able to wean her off of her oxygen during the day.  :)



Goofing off at the Cardiologist




• 
  
• General Pediatrics:
• Emma's allergies have been terrible lately.  It has turned into somewhat of a cold; however, she seems to be holding her own.  We took her in to see the pediatrician and her ears and throat look fine, so we are just suctioning her little nose out (not her favorite thing).  
• 
  
2. Emma's Therapy Update:
• Physical Therapy:
• Lots of Changes here:
• We ordered Emma a standing frame and AFOs (leg braces) to help with her low lower body muscle tone.  Both of these should be in by Christmas.  We are anxious and excited at the same time to see how these items help her in the muscle department.  Click here to see what a standing frame will look like  Emma is doing well with her rolling, sitting, kneeling, etc.  She still doesn't "enjoy" her therapy, but she participates....most days: :)

• Speech Therapy:
• Emma is eating like a champ.  She is pretty much taking all of her calories by mouth which is AMAZING!  The issue we have is with drinking.  She wants absolutely nothing to do with drinking, so that is what we are working on the most right now.  
• Occupation Therapy:
• Emma is finally wanting to use her hands more.  As you can see in the picture above, she loves to play with her stars.  She also loves paper and she does a lot of "homework"
• ECI:
• We just got Emma signed up for ECI.  She will be seeing an Early Childhood Behavioral Specialist once a week starting in December.