Hello Faithful Blog Followers:
We hope you all have had a great start to 2014. We have been enjoying many days in the
comfort of our no germ bubble (aka our house). This season is inundated with the flu, RSV, and various
other respiratory illnesses. All
of which would wreak havoc on Emma, so we stay fairly isolated this time of
year to keep Emma as healthy as possible.
She still sees her four therapists twice a week, so she stays very
busy. Speaking of therapy, Emma has
started doing some incredible things in physical therapy. Right around Christmas, Emma started
using our hands as support to stand herself off of her bench. This is a major accomplishment for a
three-year-old who has never put weight through her legs on her own
accord. Then, just within the last
couple of weeks, Emma will stand herself off of her bench (using the couch for
support) and play with toys/iPad.
We are very proud her drive and strength. She was just re-evaled for her therapies and made progress
in each one. This is a slow and
steady progress for Emma, but we are constantly surprised with the hurdles she
is able to overcome.
Well, it is that time again. Time to take Emma to the cath lab and have her heart
evaluated, function assessed, and pressures measured. This also means that potential intervention will be done:
coiling collaterals, opening up pulmonary arteries, etc. We know it is time; however, it has
been a long time since Emma has been under anesthesia or had any interventions
performed on her heart. To say we
are nervous is an understatement.
We are beyond nervous, anxious for the actual procedure and uneasy about
the results. You see, Emma has
NEVER (and probably never will be) a straightforward case. We know from past experiences that her
pressures tend to be on the high side.
What does that mean? That
means that she will potentially NOT be a Fontan candidate. As crazy as it sounds, I long to hear
the words Fontan candidate. I
would be overjoyed to set a surgical date for the Fontan because if the Fontan
is not an option at this point then what will our path look like? These are all questions/scenarios that
we will be faced with in April. Scott and I, along with our medical team
at CMC, will no doubt have some tough discussions about Emma’s future and the
best paths to take to ensure that she has the longest/happiest life
possible. In conjunction with the
cath, we are trying to arrange for her to have her eye muscle surgery performed
while she is under cardiac anesthesia.
There are a lot of hurdles to overcome before we get this completely
worked out, but we are hopeful that we can get this done so that Emma will be
able to begin learning how to see with her binocular vision instead of her
peripheral vision. This will help
with her depth perception, balance, etc.
So, now that the “heavy” news is out of the way, let’s
discuss the next few weeks.
February 7th-14th is CHD Awareness week. Please be watching my blog for facts,
statistics, and my personal point-of-view. This is the time of the year when I take extra time to
educate and spread awareness. So,
what can you do to help us spread awareness:
1.
Change your Facebook profile pic to a heart hero
you know from Feb 7th-14th
2.
Wear RED on Feb 7th and send me a
pic. Emma loves to look at them in
her
scrapbook.
3.
Talk to those you know who are pregnant about
CHDs and encourage them to
become educated and have their newborns
screened.
4.
Do you like to RUN, WALK, or RIDE your
BIKE? Join us on April 26th
in Plano,
TX:
Sign up at: http://www.redballoonevent.org Sign up under the Hearts of Fire
Team. This helps raise funds for
the Heart Center at CMC where Emma is treated. We had an AMAZING team last year and I know we can do even
better this year. Please let me
know if you sign up so we can make some plans for after the RACE. The registration is now open so sign up soon!
We cannot thank you enough for your constant prayers and
support. Please continue to keep
us in your prayers as we head into this next stage of our journey. Pray for clarity, pray for wisdom (for
us and the doctors), pray for good health through viral season, and pray for
continued positive progress in Emma’s development.
As always, God is Good! All the time!
God is Good!
Sarah
