Friday, January 31, 2014

Back to the Land of the Unknown

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
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:   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!