Sunday, July 14, 2013

Post Family Camp...

Since being home from Family Camp we are trying to cope with the Family Camp blues...  We celebrated the 4th of July with David's family and my Dad at an outdoor concert in the Woodlands, swimming, and a fireworks show (that we learned is better to appreciate from inside the car compared to sitting outside in a parking lot where the sound is ear drum busting :-).  A random thought... As much as I love fireworks, I can't help but wonder how it must feel for veterans, we celebrate them and their commitment to our country by exposing them to sounds and smells (gun powder) that likely remind them of being fired on in war (igniting any PTSD that they may have).  I adore those that serve and have served in our armed forces!!!  There are times when I feel like they are celebrities, in that I want to hug their neck or cheer for them when I see them at the airport, etc.  The fact that these folks would choose to put their lives on the line for our freedom (whether they enlisted or were drafted) is humbling and mind blowing to say the least.

One of my favorite things about the 4th of July symphony/concert that we went to is when they play the theme song for each branch of the military and the service members in that brach stand up so that we can celebrate them!  My dad was in the 101st Airborne and fought in Vietnam, so I have to say that I'm always one proud and grateful daughter when he gets to stand up because it is a reminder of what he (and so many others) gave and endured, all for freedoms sake.  I also know first hand that their blood, sweat, and tears don't just last the duration of their tour, but their experiences impact them (and their family) for a lifetime.  Please join me in praying for our soldiers and their families daily, it's the best and least we can do for these amazing men and women in uniform!

This is the only picture I have with my Dad in it from our the 4th of July Symphony

Abigail and Andrew had a gymnastics camp all week last week (from 7am-3pm) and some how they (and we) survived a fun filled and exhausting week!  Abigail had a sleep over at her BFF's (Julia) house in the beginning of the week and then we had Julia over at our house for a sleep over at the end of the week.  Andrew couldn't wait for Julia to sleep over at our house because he thinks that by default, Ju Ju is his best friend too (maybe Grace is claiming Ju Ju too, there is no telling :-)!

Grace had a Cardiology appointment on Friday.  The pressure in her mitral valve remains unchanged (which is a praise), however it is still in the severe category and it appears that her weight gain has slowed down, which is a sign that she is likely ready for her next surgery in the fall.  That is the time frame that we were assuming it would be in; however, now that it is a reality my brain (and heart) has kicked into high gear trying to think through the logistics of the kids starting school, our family being split up for 2-3 months while Grace is in the hospital in Boston, all the details that go into handing over your precious child for another high risk open heart surgery, who should perform that surgery (more on that in a minute), etc.

There is no question that the older Grace gets the harder it is to send her into surgery because the stakes are that much higher.  When she was a newborn or even 4 months ago, she was obviously special to us because she was ours, a precious child God entrusted to us, however with each day that passes we fall deeper in love with her, create more memories, and get to know her personality even more, making the thought of losing her at this point even more gut wrenching.  One of the surgery details that we are praying about right now is which surgeon (in Boston) should perform her next surgery.  My first choice in surgeons has always been Dr. Del Nido, who is the head of the department and the most experienced by far.  When I sent Grace's images to Boston and requested that he be the one to review them, they said that he wouldn't be able to review them for 3 weeks.  We didn't have 3 weeks to wait because her old local cardiologist (in Texas) was ready to schedule the surgery that she was recommending ( that we were't comfortable with) right then. Therefore, I went ahead and had the first available surgeon review her images and it was just a day and a half later that he (the surgeon) responded to me via e-mail with a "yes!"  That surgeon that reviewed her images did her last surgery in march and we were pleased with his work, however, this next surgery is much more high risk.  The stakes are higher for this surgery because it is requiring a lot more of her heart in terms of work and function (making recovery time much longer), she will need extensive work done on her mitral valve to address the stenosis, and in the event of a failed surgery we may have fewer options than a "typical" (non-Up's) child because they are not an ideal candidate for a transplant, etc (due to the fact that their anatomy is different).  All that to say, I plan to talk to her cardiologist in Boston to see if we can switch surgeons.  I would really like to know that the most experienced surgeon is working on Grace.  Not to mention, Dr. Del Nido is the one who operated on 7 out of 9 children like Grace (Up's and unbalanced AV canal), so he really does have the most experience in kids most like our little Gracie Doo.  It may sound like an easy process, but for those of you that work in the medical field, you know that switching surgeons doesn't usually happen due to ego's, politics, protocol, etc.  Will you please pray for favor in this area, that if it's God's will for Dr. Del Nido to operate on Grace that He would remove any  and all obstacles?  Please also pray for us as we begin to plan and wrap our minds around this next part of our journey.  I know first hand that God's grace is sufficient for us and that in our weakness, we are strong because it is when we are weak that we MUST rely on God's strength (therefore making us strong with a power that is fueled by our almighty Heavenly Father).  Phew!  Just pondering on the magnitude of God's power as I type calms my heart...

Huge praise for today...  Grace went to the nursery at church today for the first time and she did GREAT (and I did too :-)!  I can't thank the sweet nursery workers enough for their love and support in making sure that Grace is safe and that David and I have peace.  An added bonus, since Grace was in her class today, David and I actually got to really listen to the message and it was the best that I have heard our dear friend and Youth Pastor, Bryan Glass preach!  He always does a great job when he preaches, but today was extra special because he taught on one of my favorite verses (especially during our journey with Grace) 2 Corinthians 12:1-10:

... “My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."

Let's just say that God used Bryan in a powerful way today (just what I needed ;-).

The perfect ending to a long post (in my opinion :-)...  I took this picture this morning, it makes my heart smile when ever I look at it (I hope it does yours too)...  Check out Grace's face, she has her best "Downsy Doo" face on and I LOVE IT!!!

I always intend on my updates being brief, but some how I end up getting so long winded...  I apologize for that, thanks for sticking with me :-).