Monday, February 15, 2016

Hearts and sports of all sorts...

We still haven't heard back from Grace's cardiology team in Boston, as to when we need to go back, so please keep praying for their wisdom, God to prepare our hearts for His will, and no complications either way.  THANK YOU!!!

-This has been CHD (congenital heart defect) awareness week, a cause near and dear to our hearts, because of our Gracie girl of course, but also the fact that it has effected so many people near and dear to our hearts (to include two extra special people to us, David's sister, Becca, and our nephew, Joe) ...  1 in 100 babies are effected by CHD!  Nearly twice as many children die in the U.S. from CHD each year as from all types of childhood cancer combined!
I'm a member of a few different heart mom groups and it's an amazing and devastating honor to do life with these families.  On one hand, it is an unbelievable support system and on the other it abosultely devastates me when any of the children in our community leave this earth at such a young age and after such a hard fought battle with a congenital heart defect.  It rips my heart out to imagine the pain these sweet families are experiencing and it is a raw reminder of the unpredictability of our sweet Grace's life.  It reminds me that literally everyday with her is a gift!  All that being said, I don't know how anyone can be on this journey, or any other super scary journey, without roots firmly rooted in Christ because our tree gets blown with hurricane winds often and without Him we would break.  It is easy to feel like I'm carrying the weight of Grace's medical care on my shoulders and that if I blink I might miss an important piece of information or cue that she needs something.  I have to constantly remind myself that Grace is God's child first, so He will lead me to what I need to know.  He has proven himself faithful at every single step of this journey, so I know He will honor His promise to never leave or forsake us.  He led me (allowed me to stumble upon :-) information about the need of an increased aspirin dose for anticoagulation (to prevent a stroke).  The risk of a stroke when someone has a valve replaced (especially the mitral valve, like what Grace has) is scary high.  This is one of those risks that can scare me to my core, so I'm beyond grateful that I discovered this information and that our local (amazing) Cardiologist was quick to respond to my e-mail of concern and quick to agree to increase her dose.

-All the little people had Valentine's parties at school...



This is how excited Grace was to see her Bubba and Sissy at her school...




-David and I got to go on an early Valentine's date night, which was a special and much needed treat!
***oops...  no picture to document this special night, but that doesn't make it any less special :-)

-Strake Jesuit's high school baseball team held a hit-a-thon to raise money for Gigi's Playhouse!  These boys collected pledges for how many yards they hit and they literally knocked it out of the park, raising $$$ for Gigi's! The fact that these young men would have a heart for our kiddos and individuals with Up's is pretty awesome, don't you agree!

This guy here, James Webster, was the only kid on JV to hit a home run and wouldn't you know that as they were all warning up, he was the only one that Grace wanted to go give high fives to, so we kept telling her that he was going to hit a home run for her and he did!  She knows how to pick'em!

I just have to say... We are honored and blessed to be a part of the Gigi's family, something so much bigger than ourselves!

The 3 amigo's...


"Just hangin with my bestie..."

Abigail was in heaven snuggling Grace's bestie, Sadie, at the hit-a thon!  These two sat snuggling like this for over an hour, no joke!

Andrew didn't want to miss out on the snuggles...

A little batting practice...


Abigail getting some love from precious little Avery, while Grace and Sadie discuss their favorite snacks on the ground...

-Both of the big kids had basketball games this weekend.

It was a joy to watch them as we came to a couple conclusions...  Andrew likes basketball, but could care less about who wins and when he sees people not playing by the rules (and being rewarded for it) or being too aggressive he is turned off of the game (unless we are playing family soccer in the backyard where he is an ANIMAL).  We are thinking that team sports may not be Andrew's calling, but maybe more individual sports/activities like swimming, wrestling or even music.  Only time will tell, but one thing is for sure, the kid is crazy creative and has a heart of gold...  Abigail on the other hand is fiercely competitive.  She HATES losing and wants to challenge herself even if it is a tall order (no pun intended ;-).  This week in basketball all she wanted was to defend this really good player on the other team that is 3 times her size.  She got her wish and loved every second of it!  Remember, I stink at taking videos of the kids playing sports, but here is a video (I couldn't get the other one to upload) of Abigail defending her girl (please forgive the annoying lady in the background... me :-/, but hopefully Grace's cheering makes up for it :-) ).

-Abigail had a soccer game, which was fun to watch the girls work so well together and win the game 3-1.  Next to watching Abigail hustle so hard and not want to come off the field, even after getting a tooth knocked loose (luckily it's not a permanent tooth :-/ ) from an elbow to the face, it warmed my heart to see these 3 girls (sisters of girls on Abigail's team) so excited and eager to play with Grace.  I heard someone talking behind me and turned around to see them pushing each other toward me and saying "no, you ask her, no, you ask her..."  They wanted to ask me if Grace could come play with them and Grace was elated at the invitation.  They took such great care of Grace!  It's amazing how sweet girls pursuing your special needs child with such love can warm a mama's heart, in a way I didn't even know was possible.

-Grace blows us away with her random moments of genius...  Grace LOVES to go to the grocery store with David for some reason and she knows that she typically gets to go with him on Sundays, so somehow how she knows when it's a Sunday and she will pester us with asking when her and "dada go to the grocery store?!?!"  Also, when we are driving on the freeway she will point out buildings on the side of the freeway that she recognizes (they aren't necessarily easy to see and we are moving at a fast pace)...  she will point to the building where she goes to therapy, where Bubba and Sissy play basketball, the grocery store she loves to go to, the street where the McGraw's live (our family friends), her school (of course!), Bubba and Sissy's school (I guess it's hers too since she goes to speech therapy there twice a week :-), and so much more.  Grace is doing a great job with the ABC song and counting in a one to one correspondence to 10.  While these actions may seem pretty typical to some, they are small, but significant reminders of God's goodness and reason to celebrate in our house ;-) !!!

-The kids and I played a new game that we made up and called it the "lego challenge."  Each of us come up with something/anything and we all have 2 minutes to construct it with legos.  Andrew of course was in his element, Abigail and I... not so much, but we had fun :-).

I have to say that I was really proud of my dog!

Thank you for ALL of your prayers, love, and support, Village!!!

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