Wednesday, September 30, 2015

Urgent prayer request...

Grace's Village we need your prayers right now!  Please excuse any typos, I only have a minute to write this post.

We got a call from the Hematology/Oncology clinic yesterday and they said that they would like to see Grace regarding her last lab draw (remember the one where many of the numbers were way out of whack, especially her off the chart B12 levels).  Originally we thought that we should wait until we get the new labs drawn next week and then see if an appointment with the hematologist is even needed.  However (what I think can only be explained by divine intervention happen), the nurse from our pediatricians office accidently called me this morning (she meant to call a different family) just as I was thinking about the need to call their office to have them prepare lab orders for me to pick up in preparation for next weeks lab draw...  as she apologized for the mistaken phone call, I said "no problem, it's actually perfect timing because I was about to call you!"  I proceeded to ask her about the lab order form and in our discussion she asked me if the hematology office had called me.  When I shared with her our plan (to wait for labs next week), she encouraged me to take the available appointment since it is so hard to get an appointment (with any specialty really) in a timely manner and she said that the hematology dr's they consulted said that they wanted to see Grace sooner than later.  All that being said, the new plan is to get STAT labs drawn today and see the hematologist tomorrow (Thursday afternoon).  Will you please pray that Grace's labs look miraculously normal and that leukemia can be ruled out (along with anything else scary)?  We trust in God's sovereignty, if it has to be leukemia than we know that there is a reason for it and it's His best plan (it may hurt like hell, but He will see us through it), but we continue to pray (if it be His will) that we can dodge the leukemia bullet.

THANK YOU for your faithful and fervent prayers! 
 
 

Sunday, September 20, 2015

we've graduated from a speed bump to more of a spike strip...

This was one of "those" weeks :-/

-Grace's cardiology appointment got moved back again because of a scheduling issue, so our new appointment is on Oct. 7th :-(.  Will you please continue to pray for all good news at our cardiology appointment?

-In addition to having to cancel Grace's cardiology appointment when she was sick, we had to reschedule a blood draw in preparation for an endocrinology appointment we had this Friday.  In an effort to make sure that the results were in on time for our appointment on Friday, we had her labs drawn last Monday.  In typical Gracie fashion she threw us for a loop...  our pediatrician called me on Thursday with some concerning results.  Many of Grace's labs were off, but the ones that were most perplexing are her crazy high B12 and CRP (it's an inflammatory marker in the body).  Based on some of the other lab results, it appears that her body was either still getting over the illness she had the weekend prior or that she was battling a new infection.  However, some of the results raise concern for what could be (worst case scenario) leukemia (children with Up's have an increased risk of leukemia, but some studies show that they are more likely to go into remission).  Our pediatrician consulted a hematologist and they said that it is very difficult to interpret her labs since it appears that her body may have been fighting an infection at the time (at least that's what we hope is the case, I know...  who would have thought that we would be hoping for an illness).  The plan is to repeat labs in 3 weeks when (Lord willing) Grace's body should be completely back to her normal/baseline.  I had a teary day on Thursday afternoon (when I got the phone call) and evening, but was blessed by the support of Graces's amazing teacher (past and present- I feel beyond blessed to know them both, let alone have them love on our Gracie Doo each day) and dear friends and neighbors.  God has used this scare to recalibrate our perspective as to what really matters in life.  SO much of what we think is important each day is just racket that distracts us from experiencing the joy of the moment with the people right under our nose and answering the all important question, where will we spend eternity?  Will you please pray that in 3 weeks Grace's labs look totally normal with no sign of leukemia (or anything else scary)?

Blessings that God used to give me perspective this week...
-So, I was already having a rough day/week and I had just got flipped off on my way to drop Grace off at school in the morning (there are many days that I probably deserve to get flipped off while driving, but this time I seriously didn't do a thing other than sit in bumper to bumper traffic in the HOV lane) and as I felt deflated and frustrated at such an unkind gesture, Grace is calling my name and when I looked back at her she was making a triangle with her fingers and saying "triangle" (the show she was watching, Hi-5, a family fav, was talking about shapes).  This may not sound like a very big event, but those of you with a special needs child know that it is worth getting unfairly flipped off a million times!

-Each day the big kids know that they have to tell their momma "stories" about school.  This includes answering three questions that provide me with insight as to how their day went, giving us a chance to celebrate the good, process and pray about anything hurtful, and continue to be purposeful about how God can use them to bless others each day.  The questions are:
1)  Who made you smile today?
2)  Did you get your feeling hurt?
3)  How did you show Jesus' love?

I love and look forward to story time everyday, but the big kid's answers to question number three especially blessed my broken heart on Friday...  Abigail had the opportunity to pray with one of her friends at school who was struggling with some "girl drama" and Andrew almost missed the bus again because he was busy serving others (helping someone stack chairs, delivering water bottles left behind, etc).  I'm praying that I can focus on the "fruit" (the work of the Lord in their lives), not all of the other distractions of the world that really don't matter in the big picture.

-Our local newspaper featured a story about Gigi's Playhouse Sugar Land (Down Syndrome Achievement Center), which we are beyond excited about how it will change the lives of so many!  We would love for each of you to get involved in some way whether it's help get the word out, donate, volunteer, or pray!  Back to the article... David, Abigail, and Grace were featured in the story, see pics below...


-We had the opportunity to meet with an amazing couple from church who God used to speak truth, love, and encouragement into our lives!  Thank you Bradfords!

Weekend highlights...
-Andrew sold popcorn outside of Lowe's with his Cub Scout den...

...while these two came to the gym with me!


-Grace learned to spell her name...

In case you are wondering what in the world she is wearing, as I've mentioned before, she loves to find clothes in the big kids room and put them on, so she has a pajama shirt on over her clothes.  The best part of the video is Grace's face at the end, so don't miss that part :-).

video

-We got to watch cousin Joe's soccer game and hang out with Aunt Becca...

-David and I got to actually watch Abigail's whole soccer game because my parents took Andrew and the busy body who never wants to sit still at soccer games, Grace.  It was an intense game, they tied 2-2.  So proud of her team!

This obviously wasn't at the soccer game, but instead at open house at Grace's school.  One other time we were able to have some adult conversation this week :-).


Thank you for praying us through this season of emotional and mental exhaustion!

But he said to me, “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.

2 Corinthians 12:9-11New International Version (NIV)

Sunday, September 13, 2015

speed bump...

Thank you for all of those who were praying for Grace's echo on Friday, unfortunately, we had to reschedule her echo because Grace came home sick from school on Thursday.  Obviously, we wouldn't want to share our germs with any other heart patients, but the other reason we had to reschedule is because when you are sick, your heart must work harder, so there is a high likelihood that an illness could make the gradient across her mitral valve artificially higher than normal and then what do you do with that info (you don't know if you should attribute the higher number to being sick or if it would have been higher regardless of the illness).  We were eager to see how Grace's heart was doing in hopes of getting a better idea as to when we would need to head to Boston, but God had other plans, which we trust is the perfect plan.  Our new echo date is September 22nd.  Will you please extend your prayers to our new appointment?

Grace seems to be doing better, so giant praises that this either wasn't a respiratory infection or hasn't turned into one that put her in the hospital!  The hard part about her being sick is that she just wants her daddy when feeling yucky (she will let me snuggle her some, but Grace is definitely a daddy's girl when she is sick or scared) and daddy works now.  Those two have been through so much together, it's no wonder that he is her source of comfort.


We continue to trust God with the logistics of keeping everyone healthy while both mommy and daddy work (fortunately David gets off work at 2:00 pm and we have family close by to help) because when I try to figure out the logistics on my own it doesn't make sense, the good news is that God is WAY bigger than what my little brain can piece together.  

What do you do when your little sister is sick and cranky...

A puppet show of course!  The only problem is the desperate plea for "MOOOOORE!"  when it's all over.

This is what Grace looks like when she gets her groove back...

In case you are like me and could really use a laugh right now, check out one of our all time favorite pictures that we just stumbled across...

Thank you, sweet Village for all of your prayerful support!

Monday, September 7, 2015

Grace making a joyful sound unto the Lord...

This has been one of those weeks :-/... non-stop business and chaos from a flat tire (that led to replacing all 4 tires) to fever from the flu shot, but as a family we try to focus on having an attitude of gratitude, looking for God in the good, the not so good, and the mundane.  Here are some sweet and funny moments from the week!

-Abigail is a skeeter ninja!  This kid can see and kill skeeters (mosquitos) like a boss!  No joke, there was what must have been a genetically enhanced skeeter in the house one night because it kept trying to get me and neither David nor I could get it, then I heard it...  one of the kids had gotten out of bed to go potty, so I was hoping it was Abigail, so that she could come save us from the crazy, elusive skeeter.  It was her, so she joyfully came to our rescue, locating and killing the skeeter in less than 5 minutes!  That is when I took this picture of the skeeter ninja!

The Skeeter Ninja coming to our rescue after having already gone to bed!

-One of our favorite things that Gracie does...  when our mommy in training (Abigail) catches Grace doing something she isn't suppose to be doing she says "Little Doooooo" with her hands on her hips and Grace gets a big smile on her face and repeats it back to Abigail.  For some reason, any time she does this the whole family can't help but laugh!

-The house was too quiet for all of a few minutes, when I immediately wondered were Grace was...  I heard some noise coming from her room, but the door was closed.  As I got closer I could hear her singing "Amazing Grace", I quietly opened the door and peaked in and she had turned off the light, turned on her noise machine, climbed into her rocking chair with her baby, and was singing the baby to sleep.  I tried to get a video of the sweetness, but when I went to video her my phone turned on a bright light (I guess because it was dark), but Grace quickly stopped singing and peaked around the side of the chair to see what was going on.  I couldn't help but laugh, but it was all kinds of sweetness and I was so proud of her for preparing the room so well to get her baby ready for bed.


-My heart melted when Andrew came to tell me, with the most sincere look on his face, that he "just LOVES listening to Grace sing, she's so cute!"  So simple, but full of perspective, the fact that we get to hear Grace sing is a miracle in itself.

This picture has nothing to do with what I mentioned above, but it is a picture of Andrew trying to make Grace laugh by acting like one of the baby ducks (we found these ducks and some turtles behind one of our new favorite restaurants). 

-Our week ended with a great long weekend- We loved getting to watch Abigail's soccer scrimmage on Saturday and pool time with my parents...

Random picture of Papa and Gracie Doo!

...then we spent part of Sunday and Monday in The Woodlands with my in-loves (David's parents/family) and had a sweet time with lots of laughs.  Too bad I failed to capture any pictures, except for Grace eating ice cream of course :-)!


PRAYER REQUEST-  Grace has her next cardiology appointment on Friday.  Will you please pray that her heart continues to look great and that the gradient across her mitral valve is the same (or better because we know that God can do that :-) as it was 3 months ago?  We know that a trip to Boston to dilate the valve is inevitable, it's just a matter of when her doctors feel that it's time (her doctors thought that she would need it dilated a year after it was placed and we are coming close to two years, so we are certainly grateful for that blessing).  Along with the dilatation comes the risk of complications (a tear in the valve that could lead to a leak, requiring replacement via another open heart surgery sooner than we hope) and as you know, Grace never does things by the book, so that in conjunction with the fact that she's only the 21st child to have this valve in the mitral position, there are still a lot of unknowns, making for what could be an anxiety producing situation.  Will you please pray for wisdom for her doctors and peace for our family as we trust that God knows when is the best time to go (I hate to have to go when the big kids just started school and David just started his new job, but trusting God's timing is always right)?

This picture came up on my Facebook timeline this week...
To God be the glory for rescuing Gracie from her first "crash cart" experience and everything that she has endured (in His strength) since then!