Sunday, June 5, 2016

To Boston and Back

-Abigail turned 9 years old!!!  She is wise beyond her years... always the smallest on the field, court, mat, swimming pool, etc, but has the biggest drive always wanting to go up against the biggest opponent... She is a fierce advocate for her sister and all of her special needs friends... She has a tender heart and loves to serve... She is committed to following hard after God even when it's hard... And she makes me a better person everyday!

We went to lunch with Abigail for her birthday...

But the real highlight was Grace being there!

She insisted on going to a non-mandatory soccer practice despite it being her birthday, but we got to enjoy a birthday dinner after!

-Andrew went from being a Tiger to a Wolf in Cub Scouts!  So proud of that boy!!!

***Your faithful prayers (and ours) for a smooth trip to Boston were not only felt, but answered in a big way!  God did exceedingly, abundantly, beyond anything that we could have imagined.  Since Grace was 10 weeks old in my belly, smoothly is a word that I could never use in the same sentence with Grace.  The one time that things seemed to go smoothly, little did we know that a catastrophic storm was brewing in the distance (remember when she came home from a record breaking recovery after her biventricular repair and crashed a few days later after arriving home, requiring her to be life flighted back to Boston, two more open heart surgeries, and our family being separated for 2 and a half months?).  That is why David (without telling me) packed extra clothes for our trip to Boston, he was almost certain that our trip would result in him and Grace needing to stay longer, while I went home to be with Abigail and Andrew.  However, God allowed things to go smoothly!  Despite the fact that Grace's cardiologist was on the fence as to if they should even dilate the valve after looking at the echo they had performed on the day of pre-op, it showed that her gradient across her valve was a 6 (her last echo in Texas showed a 13), so he wasn't convinced that it was worth the risk, thus he had a conversation with the person who was scheduled to perform the heart cath and her surgeon.  We all agreed to move forward with that cath and let them make a decision as to what to do once they got in there and got a good look at the valve.  The first few hours of the heart cath flew by, thanks to some precious families we got to meet, encourage and be encouraged by.  Before we knew it, my phone rang and they said in the cath lab that her gradient was a 5, but they went ahead and dilated the valve because they could see there was some narrowing of the valve that could have been causing some obstruction.  They said they had already dilated the valve and the new gradient was a 0.  Then, she said they should be done in another hour or so.  I repeated what I heard the nurse say because I was certain I missed something, to which she replied, "that's right".  David and I were completely dumbfounded and preparing ourselves for a rough recovery because the last two heart caths she had, she was all out of sorts afterwards and not acting like herself.  Nope, not this time... in recovery she slept for about an hour and woke up asking for her daddy (which is totally typical for Grace) and despite having to work to keep her laying still for 6 hours (to prevent her from bleeding out at the site they entered for the heart cath) recovery went smoothly.  We are still trying to allow ourselves to exhale, accept, and rejoice that things went so well, but it's still so hard to believe.  In many ways, it feels like a miraculous event!  Again, we can't thank you enough for your prayers!!!

Great flight to Boston...

Enjoying the snuggles trying to get her to take a nap.

Went for a walk on our favorite trail once we arrived...

Grace rocked her 8 hours of pre-op the next day (chest x-ray, labs, echo, clinic visit, oh my!)

The famous "DR MARRRRRX!"  Grace talks about him like he's a true celebrity, well because he is (to us ;-)!

Grace made a new beautiful, incredibly smart, and super sweet friend (her family was pretty amazing too!)

We had the pleasure of spending a long time with them in the waiting room.  As our new friend said goodbye to Grace, she gave her a hug and said "I will never forget you.  You have my heart.  Here is my heart."  

Up bright and early for heart cath day...

Grace is getting loopy in this picture...

And... she's officially loopy!  She was a joyful drunk as she waved and talked to everyone around her as they wheeled her away.

The end result...  a valve that had a gradient of 5 in the cath lab and after dilation went down to a 0.  Everything went smoothly!  Praise the Lord!  Now, to keep this sweetie laying still for 6 hours once she wakes up.  

Surprisingly, it went much more smoothly than I could have imagined thanks to Frozen being on repeat (no joke, we must have watched it 7 times in a row that day and night), her daddy being by her side...


The nurses and other patients just wanted to bless Grace with sweet gifts during her stay in the hospital.  SO SWEET!!!

Already riding around the unit the next morning!

After being discharged we had time to head out to the city on the train to meet up with some other precious new friends that we met!

Grace's precious new friend, Aleece!  These two were instant buddies!

This is how they walked around the mall...

Hug from God- The day before Grace's heart cath, after a long day of pre-op, we got a chance to talk to Abigail.  She was so excited to share with us what the Lord had taught her that day.  God used a school field trip to the movies to remind her that our identity is not in things of this world, but in Christ alone.  Without going into all the details, to hear that our little (big) girl obeyed what she thought God was calling her to do, despite the fact that it felt uncomfortable and even uncool at the time, made us so proud of her and grateful.  However, to hear that through her obedience, He spoke to her so clearly about where her identity is rooted is awesome!  This being a lesson we talk about often (her identity isn't in her grades, how well she plays at soccer, who her friends are, etc), but God is a much better teacher than we are and it is amazing to watch your child's relationship with the Lord become so authentic and truly their own.  He is SO good!!!

This was Abigail on her way to school the day she was to play Sleeping Beauty in her class play.

-We had a second ARD meeting for Grace at our public school 2 days after getting back from Boston.  We had been praying that through that meeting, God's will for Grace's schooling for the next two years would be made undoubtably clear.  He did just that!  We were humbled and blessed to be surrounded by an ARD committee that truly cares about what is best for Grace and we feel desires to serve her well, helping her aspire to be all that God created her to be.  The thought of not returning to the Rise School next year is still hard to imagine (we will cherish the last month she has left there), but we move forward with peace that surpasses comprehension that the PPCD Pegasus program will be good for Grace and the rest of our family!

This pic is totally unrelated, but it certainly shows her spunk.  She loves putting on Sissy's soccer clothes.  In fact, tonight she told me that she was going to play soccer and asked Abigail to pray for her that she would go hard.  That girl!

-The big kids finished their 1st and 3rd grade year strong!  We couldn't be more proud of their commitment and drive in their academics (although their level of commitment is different...  Andrew does just enough and Abigail has to work harder to get good grades, she is willing to put in the work) and being a light for Him in their school.  As I've mentioned before, my favorite people in the world are our military service men and women, police officers, fire fighters, and teachers.  They have such selfless jobs that require so much sacrifice for such little monetary gain (in comparison to what they deserve).  They are protecting and helping shape our culture and next generation, it doesn't get much more pivotal than that.  We have once again been blessed with amazing teachers and administrators at Campbell Elementary!
Last day of school!

-Two grateful mommy moments-  Andrew demonstrated such courage when dealing with a situation where an older kid was bullying him and other younger kids.  I have a feeling that taking wrestling class has given him an increased confidence that he can stick up for himself and others. If you live in our area, I can't speak highly enough about Fort Bend Wrestling Club.  Both Abigail and Andrew love it!!!

At swim practice on Friday, the 9-10 year old boys and girls had a planking competition.  Abigail just turned 9 last week, so not only is she one of the youngest in the group, but she's certainly the tiniest, yet again she demonstrated her unwavering determination.  She held this almost perfect plank position never putting her head down or booty in the air (like it is so tempting to do) for 6 minutes.  Her and one boy were left long after everyone else dropped out, so they eventually called it and let them both win.  So proud of that girl!

Not sure if you can see her down there on the pool deck, but it's the only pic I got...

-Had a blast at Gigi's Playhouse this weekend!!!

Just hangin' with my Bestie!

Look at all this sweetness!!!

Prayer request-  So, we are suppose to leave for Pine Cove's Family Camp in 2 weeks.  Since we've been going to Family Camp, every single year the enemy gets busy trying to tempt us to doubt that we will be able to make it...  The first year we got Grace's devastating diagnosis about her very broken heart two days before leaving, the next year Grace was just a couple of months out of open heart surgery and nobody had every really held her outside of our immediate family for fear of germs, and the past two years Grace has been in the hospital for pneumonia a week prior to our leaving.  We have come to expect these attacks, so will you please pray that this year we would start a new trend and nothing would threaten our ability to attend Family Camp (specifically, that everyone would be healthy and injury free)?  Family Camp acts as a reset for our family each year, as it refocuses us back on the Lord  and what really matters, you can imagine why the enemy doesn't want us there.  THANK YOU!!!

I will leave you with Grace singing "You are My Sunshine" with Grandma Crack.  It's crazy how well she knows the words when her Grandma has only sang it to her a handful of times.  Hope you enjoy this sweetness as much as I do :-)