Sunday, April 24, 2016

Highlights and not so high lights...

Highlights from the week:

-Grace continues to be obsessed with watching The Christmas Choir video (from Abigail's 3rd grade play at school) multiple times a day.  It is unbelievable how much joy it brings her, making it a great treat/reward for doing what she's asked to do.  She knows all of the songs and dances, but her favorite part is finding Abigail in it.  Grace even puts her hair behind her ears at the same time that Abigail does in the video, my point being that Grace has studied EVERY detail of this video.  We can't wait until the video from Andrew's 1st grade play comes in the mail because we are eager for a little variety :-).

-It was a few weeks ago that I was getting ready for bed while Grace was playing in the bathtub and all of a sudden she just busted out the "abc song" and nailed all of the letters, except she sometimes leaves out "T" or "Y" and finishes the song with "won't my mommy be so proud of me!"  Ummmmm, yeah I 'm proud of you girl!  Don't get me wrong, it's not that I didn't think Grace would ever know her "abc's," but I guess I did underestimate her ability a bit since she blew me away with how clearly she said the letters and the fact that she even nailed "L, M, N, O, P!  ...and just to really glorify the Lord, she took it to a whole new level when she would call my name and show me a letter (you know the foam letters that can go in the bathtub) and tell me which letter it was.  She certainly doesn't nail them all, but she happened to get the majority right that time and I just about cried because I was so proud of her!  I can easily get focused on her physical health (especially lately, more on that in a minute), so when she hits a milestone/achieves a big or small developmental goal it can catch me by surprise and knock my socks off.  It serves as a vivid reminder of how God is doing a mighty work, even when we are distracted and feel like we fall short.  It is also a reminder of all the hard work that her teachers pour into her each and every day (along with her two best teachers, Abigail and Andrew).

-Grace's spontaneous, perfectly worded, and simple prayers continue to bless us throughout the day!

-Some of our favorite Grace sayings:
"share some"- anytime you are eating something that she wants.
"ok, momma, ok!"- when she is doing something that you asked her to do.
"Sweeeeet!"- when someone does something that she thinks is nice.
"Oh sowry momma!"- when she is apologizing for something.  She is quick to apologize for almost anything that she thinks might have hurt someone, or when you do something wrong, she apologizes instead.
"THAT???"- when she wants to know who someone is/their name (which includes her pointing at the person).   We are still working a more polite way to ask "what is her name?" :-/
"I'm ciiiiiited"- when she's excited about something
-she sings everyone in the family happy birthday over and over again!

-David took the girls to get their hair cut on Tuesday, since they all had the day off because of local flooding from all of the rain we got.  When he sent me these pics, my heart skipped a beat because they went way beyond the two inches that I approved...  I've adjusted and am learning to love her freshly chopped short hair because she can rock any hair do, I just had no idea that her hair was so sentimental to me.  It all stems from the months she spent sedated and intubated in the hospital that caused the back of her hair to completely break off, with patches of bald spots (her nurses always tried to help us take the best care of her hair as possible, but it was inevitable), so when it eventually grew back it served as such a sign of redemption that I never had a desire to cut it.

-the big kids are both wrestling right now which is fun to watch, but hard when they pair Abigail and Andrew up because, despite Andrew being 5 lbs heavier than Abigail, she is one of those kids that is going to go hard core no matter what she's doing (I don't know where she gets her intense competitive drive from :-/ ), so she smokes him, but not without him putting up a heck of a good fight.  Luckily, they aren't paired up often, just when there aren't other kids there who are a good match for each of them.

-I got to join my boy on his field trip to the Children's Museum!

-Saturday was a beautiful, sunny day for soccer, made even sweeter when we realized that Abigail was playing against one of her friends from church who we haven't seen in a while.  It was sweet to see them encourage each other on the field, even though they were on opposite teams and defending each other.  Then, today's game was a great game, but they had to call the game with about 10 minutes left to go because what started out as rain, turned into torrential down pour.

Now the not as high highlight...

-Grace had a follow up cardiology appointment this week since they wanted to see her 2 weeks after being discharged from the hospital.  For the past couple years, the gradient across her mitral valve has been between a 6-9, however this time it was a 13.  We knew that at some point her gradient would go up because she's growing and the valve is a fixed diameter, but we just didn't expect to jump that high that quickly.  The good news is that we already have a heart cath scheduled in Boston for May 27th (we leave on May 25th for a full day of pre-op) to dilate her valve.  Originally, the heart cath was scheduled prophylactically (her team in Boston thinks that it makes sense to dilate these valves at 2 years, even if the gradient doesn't warrant it, just to stretch the valve); however, based on this week's echo it is clear that she is due to be dilated anyway.  Praising the Lord for His amazing provision in that he allowed us to get on the schedule for her heart cath (they are extremely busy in Boston, so it's not easy to get an appointment quickly unless it's very urgent) knowing that she would really need it by the end of May (it's no longer prophylactic).  Will you PLEASE pray for every last detail going into out trip to Boston, that God would keep Grace totally healthy prior to and after her heart cath (we will have to reschedule if she is sick leading up to the heart cath), that the big kids would have peace about us going, that Grace's heart cath would go seamlessly (no complications what so ever), and that we have safe and smooth travels?  Anytime you mess with a valve there is a risk for damaging it, in which case they would have to go in via open heart surgery to replace the valve.  Our prayer is that Grace can keep this valve for many more years, until she is big enough for an adult size valve, so we would greatly appreciate your prayers that the valve is in no way damaged during the dilation and that the Lord would protect her from any of the risks associated with having a prosthetic valve, like a stroke, etc.  I have been struggling with a broken heart and bouts of fear the past couple weeks, as a couple of precious children like Grace (either heart defects, Down Syndrome, or both) who I have had the honor to walk closely with their mommies through this journey, have been promoted to their heavenly home.  My heart aches for these sweet friends as they endure a brutal reality of this broken world by having to burry their babies.  The loss of these kiddos that are near and dear to my heart has served as a constant reminder of the very real reality that we don't know how long the Lord will allow us the honor and privilege of being Grace's parents on earth.  I know that tomorrow isn't promised for any of us, but this truth is always in our face with our Gracie girl.  It is a constant battle to give those thoughts and fears over to the Lord because otherwise the fear can be paralyzing.  God has been so faithful and His character is such that we can trust His heart and perfect provision, so we cling to His promises and yearn for eternity where we will never have to worry about broken hearts, infections, and ultimately separation from each other by death again.

-Last prayer request, our dog Tucker is 13 years old and not doing very well.  There are days that we feel like it may be his last day because he gets so confused, his back legs don't hardly work anymore, he is skin and bones despite the fact that he still eats, etc, but then out of know where he will surprise us and perk up.  We just want to love our puppy well and do what is best for him, but also take into consideration timing for the kids (with us going to Boston again soon, I know that can bring some fear for the big kids, etc).  Will you please pray for wisdom to know what to do and that God would prepare all of our hearts for what the future holds?  

This is our sweet Tucker with his best buddy, Twinkie, who absolutely ADORES him! This is what she does much of the day, licks his back.  Please also pray that Twinkie doesn't die of a broken heart when Tucker's time is up :-(.  

Sunday, April 17, 2016

Very brief update

Our apologies for not posting on the blog lately, life has been a little crazy here and we have realized that we have not had a moment to spare and write a post.  Kristi asked me, David, to write a quick post as to what has been going on in our lives, so here it goes.

A couple of weeks ago, we had one of those weeks when one thing after another breaks down.  First it was one of our two toilets broke, then my car decided not to shut off/keep running (even after I would pull the key out of the ignition), so we were busy with a few days of getting the car and toilet repaired.  Then, right after that Grace's little body broke down, she was sent home sick from school in the middle of the week and by 2:30am that Sunday, we were taking her to the ER, due to her breathing being labored and low oxygen saturations dipping much lower than we were comfortable with.  She was admitted to the hospital for four days and discharged in the middle of the week.

This is how we started in the ER...

...and this was 4 days later!  Almost back to her silly self!

Luckily, Grace was discharged just in time to model in the GiGi's Playhouse fashion show... addition to Kristi and I being able to get out of town for the weekend to celebrate our 13th anniversary!!

Double anniversary celebration with great friends

Two days after we returned, Kristi was off to New York for a work meeting for two days and made it back home about an hour before Andrew's school play, in which he did a great job!  Then, Abigail had her school field trip on Friday, to which Kristi was able to join in on the fun.

Andrew's biggest fans...

Field trip at Brazo's Bend State Park

Then, yesterday we had the Rise and Shine 5k run at Grace's school, followed by Abigail's soccer game...
The girls ran the 5k

The boys (and mom's) ran the 1k...

...Then a brief two hour break before we went to the Houston Dash (Women's soccer) game where Abigail and her soccer team were able to go on the field and hold the flag for the national anthem.

I'm sure I am missing some things, but these are some of the reasons why we have not had the time or energy to post on the blog the past few weeks.  Hopefully, next week will be a regular post!

Have a great week!