Wednesday, June 26, 2013

My Incredibly Shrinking Girl?

Emma has really been showing us some “big” improvements in her development lately.  It has been so much fun watching her get so excited about her new accomplishments.  Her progress has been extremely evident in her communication skills.  Emma is signing several new words and making choices via cards and communication i-Pad apps.  She is getting quite demanding now….which has led to the game: who has the strongest will ;)  

Emma is working hard in Occupational Therapy to become confident in water play.  Some days are good…some days are so hard, but we continue to push her to get out of her comfort zone and conquer this fear.  Our goal is to have her enjoy the big pool and splash pad by the end of the summer.

We are seeing Emma’s leg muscles getting stronger.  We are now able to unbuckle her in her stander and she is able to maintain her upright position for up to 30 mins.


Now that you have a brief update on her therapy regimen,  I will try to update you on her medical status.

Emma has been without her scoliosis brace for about a month now.  I won’t get into all of the details, but we had a fall out with Emma’s current orthopedic specialist after a misdiagnosis.  Emma had significant swelling on an area of her spine that is more-than-likely due to improper brace fitting.  We will be meeting with a new orthopedic specialist on Thursday morning.  We are hoping and praying that this new doctor appreciates our role as parents as well as works hard to find a method to slow down the progression on Emma’s scoliosis.  It has been so sad to watch her posture deteriorate as the month has passed.  We are very anxious about this appointment due to how integral her back status is to her future heart surgeries. 

Another issue that has literally knocked us off our feet has been Emma’s growth and weight gain.  We took Emma to the endocrinologist last week and she has not grown in height or gained weight in 6 months.  You could have literally wiped me off of the floor.  Why?  Because, Emma has been eating like a champ and looks so much longer.  So, after a quick check-up with our cardiologist and nutritionist, it has been decided to try to add calories to the food she is currently eating via DuoCal (a powdered calories additive) in hopes to help her gain weight, which will hopefully encourage her growth.  If we do not see any growth in 3 months, Emma will (more than likely) undergo a series of growth hormone stimulation tests. 

July is fast approaching and with it will come an appointment with the pulmonologist, dentist, and cardiologist. 

We appreciate your prayers as we continue to do our best to get Emma the best medical care possible to ensure that she has the best life possible.

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