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!
