Sunday, March 30, 2014

God's will revealed for Grace's school next year...

Happy Sunday, sweet Village!  Well, the big news of this week is that Grace got into The Rise School!  If you are interested in learning more about The Rise School, please check out their website at http://www.riseschool.org.

The journey that the Lord has taken me on as we waited for the news, whether Grace got in or not, has really been a game changer in my life.  It has taught me how to…

1) be content with (actually to love) not having a preference.  This for some reason was difficult for me because I sort of liked having a preference about stuff (maybe because it gave me a sense of direction, I don't know).  As I have shared with y'all before, I initially wanted Grace to go to The Rise School for selfish reasons (to make her as least Downsy as possible, etc) and when God helped me to see my pride in that way of thinking, God changed my heart and I became very content and happy with Grace going to the same wonderful pre-school that Abby and Andrew have attended (it's called School for Little Children and we have been nothing but blessed by that amazing school and it's teachers), after all it was SO much closer, cheaper, and an easier transition (2 days a week vs 5 days a week).  Then, as we were praying about the next school year for all of the kids we felt an increased interest in revisiting the idea of Grace going to The Rise School, but it felt SO different this time because it was no longer about me.

2) trust in God's will and find joy and peace in whatever His revealed will is.  During this process, God revealed to me just how true Jeremiah 17:9 is in my life "The heart is deceitful above all things, and desperately sick; who can understand it?" The truth is that not only did I NOT have a clue what my preference was (since it seemed to change everyday), but I certainly don't have the infinite and perfect wisdom of the Lord.  We prayed that the Lord would align my (and David's) heart and mind with His will, and He did just that by giving me (us) great peace (the kind of peace that surpasses all comprehension) regardless of what the answer was.  No matter what the answer was when I got the call on Tuesday from The Rise School, we would have rejoiced knowing that God's will was being revealed and it was going to be good and perfect for our family (not easy, but good :-).  God is working out other big decisions in our lives just the same way, it is a priceless gift that is wrapped in joy, peace, and freedom.  

I apologize for always getting long winded on you, I can't help but share what God has taught me through this journey just in case someone can relate and find hope in their season of crazy :-).

Here are a few other changes in the Ross household…

-when I open the pantry to get a snack, the resettling of a bag will quickly attract two dogs and a Gracie at my feet begging for food!  This is most certainly a welcome site since Grace has not been interested in eating people food since her last 3 heart surgeries (the last of which was the beginning of December).  She looks up at me and does the cutest lip smack thing as if to say "I want some too!"  She has wanted to taste everything from "bunnies" (like goldfish crackers) to my smoothie.  She probably only swallows 1/10 of what she's eating because she will take the big pieces that she breaks off out of her mouth, but again, the mere fact that she's interested is super exciting!     

-Abby went to her first concert on Friday night with some of our dear friends.  

We were even blessed with the opportunity to participate in a "meet and greet" with the bands.  They were so sweet to the girls and it made getting to see them on stage even more special.  

Here is Abby doing the "chainsaw dance"…
video

-Abby had a soccer game on Saturday.  Her team got smoked, but she played one of her best games and had a great time! 

-There have been a number of instances now where all three kids are in one of their rooms together with the door shut, playing together and it just makes my heart smile!  

-Grace had her first Physical Therapy appointment on Friday and we really love how her therapist works so hard to get into Grace's head to understand why she may or may not be doing something.  He then pushes her pretty hard on various exercises.  It may be in our head, but we feel like we have already seen a difference in what she's willing to try from that one visit.  He's coming back again on Monday to continue to work on "figuring Grace out" so that he knows how to best work with her and where to set her goals.  

Will you please pray that Grace isn't getting sick?  She has been more fussy than normal today, especially at church :-( and she's had a low grade fever since this afternoon with clear drainage from her nose.  We are praying that it's just teething (she does have two bumps on her gums) and that it passes quickly.  Will you please also pray for strength and wisdom for our family, this is a busy and chaotic time for us (as I know it is for many, probably most, of you too)?  Thank you and we love you, sweet Village!

Here are a couple random pictures from the park this afternoon…

Grace and I went on a walk around the park and lake while the big kids (including David) ran and rolled down the big hills.


… allllllmost got all three kids looking at the camera, and smiling with their eyes OPEN

…forget it, this is a better representation of what our family is really like anyway :-)



Sunday, March 23, 2014

World Downsy Doo Day and more...

Andrew had his first drum lesson and Grace had her first ophthalmology appointment this week.  Andrew loved the drums and Grace's appointment was... pure torture!  This was Grace before her eyes were dilated…

Once her eyes were dilated she became very uncertain about her surroundings and when the dr came in she immediately gave him the heartbreaking "frowny face"…

This is a mild version of the "frowny face," but you get the idea…  This face breaks our heart every time and makes us putty in this kid's hands! 

…she held it together for a good bit of the exam, but the last part where the Dr had to shine a light in her eyes while holding some magnifying thing in front of each eye separately was enough to throw her over the edge.  5 heart surgeries, check…  eye Dr visit, game over!  Picture this sweet hunnie crying so hard that she would hold her breath, turn bright red, make herself gag, spit up, and then repeat.  She cried so hard that she has some burst blood vessels on the side of her head :-(.  After the torture was over, we walked to the front counter to check out, she was still very upset, but waved goodbye and blew kisses to the nurses through the tears.  I'm still praising the Lord that it's over until next year, but most of all that her eyes checked out great!  

Friday, 3/21, was World Downsy Doo Day!  We were blessed to have our very first Sugar Land Down Syndrome group gathering (I totally failed at taking pictures of the sweet time).  When we arrived to our church Home Team on Friday night, they were all sporting their Downsy Doo colors and/or crazy socks! 

LOVE THEM!!!



Aunt Becca and cousin Joe representing too!!!

3 of our favorite local restaurants donated 20% of your bill to Research Down Syndrome, so we went to Guru and not only loved our food and the owners heart to support those genetically enhanced friends like Grace, but we met some new friends there too!

This day was extra special for me because I have spent the last 7 years begging God not to give me a child with Down Syndrome (because I always felt like we would have one), but I never begged him more desperately than the 9 months that I was pregnant with Grace.  I frequently have flashbacks of those conversations with God as we drive by the route that I would run home after going on runs with my friend.  It was on those runs (and in the middle of the night) that I begged away for 7 months.  From the moment we found out we were pregnant I had a hard time celebrating because I just knew that my worst fear was going to be realized.  When David shared with me that he thought we should have a third child, I said to him "you know if we have a third kid it's rolling the dice, so God can slip a Downsy Doo into our lives."  To which David replied "if that's what God wants us to have, that's what I want!"  At that time, having a child with Up's seemed like a devastating blow.  Fast forward 2 years and we celebrate that we were chosen to "have one."  The reality is, unless you "have one" (or are related to one) it's kinda hard to explain, but we truly feel honored to get to have Grace in our family (extra chromosome, broken heart, and all) because Grace has allowed us to experience God in a life changing, mind blowing way that has come with great heartache at times, but has been trumped with tremendous joy, love and freedom.  There are so many other blessings that Grace's life has revealed and one of those is the unwavering love and support of you, our Village!  Y'all know what we need when we don't even know what we need, you some how know when we need some random encouragement, you make sure that through the craziness Abigail and Andrew are not forgotten, and you have taught me what it means to love and serve someone well.  You have made such a huge impression on my heart that I find myself thinking about and praying for you individually often.  I think about all of the big and little ways that you have blessed us and I pray that I can be for others what y'all have been for me (us).  Can't wait until next year's World Downsy Doo Day, but why wait a whole year, let's celebrate God's goodness and perfect provision/plan (I'm sure glad He doesn't answer all of our prayers because we would have missed out on one of life's biggest blessings) everyday! I know that there's a high likelihood that someone reading this right now may be struggling with their own heartache, whether that's with infertility, financial, marital, loss of a loved one, insecurity, etc, but I just wanted to remind you that God has not forgotten about you and He is able to reach into your circumstance and deliver you from your pain or make the pain bearable (and sweet at the same time :-).  I know this is true because God says so, but also because He has done this in our lives over and over again.

Abigail had her first soccer game of the season on Saturday morning and she scored 2 goals!!!  Somehow, this is the only picture that I took at the game, I guess that I was a little distracted :-).
In case you can't find Abby in the pic, she's the little bitty one :-).

We went to dinner to celebrate family birthdays on Saturday night and Grace actually held some bread and took microscopic bites off of it.  We will take it!!! David and I were ELATED to say the least!!! 

She loved taking a bite and then giving her Daddy a bite...

Hope you have a blessed week, sweet Village!

Sunday, March 16, 2014

Spring Break!

Spring Break went by fast with out one utterance of "I'm bored!"  There was no time for boredom because the big kids got to have a 2 night sleepover with their cousins and we participated in one of favorite annual family activities…  
CAMPING WITH THE GLASS'!


Oh how times have changed over the past 4 years…

Second to the addition of Grace, I still think that the biggest change is in the tent upgrade…

Grace freely shares her sweet smiles, but when she doesn't see one of her family members behind the camera smiling back at her, as you can see she just gives the stink eye.

There's our happy girl again :-)



This is the tree that Andrew spent most of his time in...

…and Abby spent time hanging in!

We had some great bike rides that I failed to get pictures of, but I love these pics of the kids playing tag with the sunset in the background…


More silliness…

Best friends…

And Grace certainly adores her buddy Noah who is only 10 days younger than her, but he teaches her so much!  Grace and Noah only came for a couple of hours because…

 ...it was FREEZING at night (and by freezing I mean, we all slept in 2 sleeping bags, 2 layers of warm clothes, heavy jackets, beanies and gloves).  Despite the cold, we had a blast and added to the many special camping memories!

Praying y'all had or are soon to have a great spring break too!  

WE
YOU!!!

(Andrew found a leaf and tore it into a heart for me :-)

Tuesday, March 11, 2014

Cardiology appointment update...

Village, if you prayed for Grace's cardiology appointment today, I want you to know that your prayers were heard and God said "yes!"  Grace had a miserable time going to sleep for her sedated echo.  They had to give her extra sedation medication and she fought it hard.  Once she was finally asleep, the echo tech got to work; however, it seemed like she spent a looooong time time looking at one part of Grace's heart and that is when worry began to creep in.  When a Dr or tech spends a long time looking at something specific, alarm bells go off in my head because it has always meant that bad news was soon to follow.  A blessed interruption to all of the chaos was the opportunity to meet a new friend at the cardiology clinic who has a precious 7 year old boy with Up's!  When we first walked into clinic and David saw her son looking at the fish in the fish tank, he gave me a look that said, "there's another Downsy Doo!!!," our hearts leapt and I secretly hoped for a chance to talk to him and even meet his mom.  I was fortunate enough to get to do both…  I love when God does that!  Back to the update, after Grace's echo, her Dr walked in and said that her echo looked "great!"  The gradient across her new valve was lower than last time (insert happy and super grateful dance) and she continues to be amazed that Grace is the same kid that was clinging to life in the ICU just 4 months ago.  Our next cardiology appointment is in two months (that's the longest that we have ever gone in between appointments).  PRAISE BE TO GOD and thank you Village for your faithful support!

The one change that came from our appointment today is that we are stopping Grace's lasiks (which means that she will not be on any heart meds any more).  I'm a little (or a lot) nervous about stopping her lasiks because there is always a chance that her lungs could get wet (fill with fluid) again, causing labored breathing, etc.  Her Dr does't anticipate that happening, but we are suppose to keep an eye on her to make sure that she tolerates the discontinuation of her lasiks.  Will you please pray that she seamlessly transitions off of the lasiks and that her little body isn't negatively impacted in the slightest?

Rough day on the job today for Grace...


 


Sunday, March 9, 2014

18 months of praise...

Grace had her 18 month well check visit this week and for a moment her Dr looked worried that she had fallen off the growth chart, until she realized that they had still been tracking Grace on the "typical" kids chart.  Once she plotted her on the Downsy Doo chart, she boosted on God's goodness big time…  she was in the 95% for height and 75% for weight!!!  As many of you know, we tend to make little people, so Grace's stats are nothing short of amazing, ESPECIALLY when you take into account that she's a heart baby (weight is always a battle and something that you watch very closely when you have a heart kid)!  I can't remember a whole lot of other details from the appointment except how much Grace cracks her Dr up with her personality; I guess that means it was a great appointment because I didn't walk away with any big concerns (not this time at least :-).  Another praise is that Grace seems to be lifting her boycott on sign language!  She will now sign "more, all done, eat, bottle, thank you, yummy" and she has all sorts of other fun tricks.  Praising the Lord for the opportunity to get to watch this little angel blossom.

Abby's 1st grade class had Reading Restaurant, where the kids serve their guests by reading to them and the bill at the end calls for hugs as payment.  These kids were so polished and took their jobs so serious…  it was simply precious!!!
As you can see, Grace is always the highlight :-)


Andrew had rodeo day at school.  Love this cowboy!

This weekend we went to the zoo for the first time in… a long time, in fact it was Grace's first time to the zoo!  We had such a great time and it was a beautiful day for some fun family time and oohing and awwing at the super cute baby animals.  



Duncan, the baby elephant that is just a few weeks old, was certainly the highlight of our trip to the zoo!  

He looks much smaller in person for some reason...

Here is Andrew's favorite animal, the cheetah!  If your kids (especially boys) haven't watched Wild Kratts, I highly recommend it.  A typical day in the Ross house consists of all things "creature power."

Here are my favorite animals posing with the cheetah...

I wish I had a picture of Abby's favorite part of the zoo, but some how we didn't get a picture of Miss Kelly.  One of our sweet friends works at the zoo and she walked around with us and told us tons of fun facts about the animals.  Miss Kelly was Abby's favorite part of the zoo :-)!

We went to Gramaldi's, where the kids love playing with the pizza dough while we wait for our food.
Abby made a heart because… well,   we are obsessed with all things hearts these days (in tribute to Grace's special little heart).

Andrew made…  me!  Unfortunately, the flash makes it impossible to see his creation, but I can tell you that it looks just like me ;-)

Grace has a cardiology appointment on Tuesday of this week.  Sweet Village, will you please pray for nothing but great news?  Please pray specifically that her heart and lung function/pressures look perfect and that her valve is still doing amazingly well (it's not leaky and the gradient across it has stayed the same or even gone down)?  

Thank you, with much love and appreciation!  

Sunday, March 2, 2014

Out of the mouth of babes...

I don't have much to update y'all on except for the fun birthday festivities that I was blessed enough to experience.  My actual birthday was Friday, and it was full of sweetness, thanks to kind messages on face book; a special gift from a special friend; David, Andrew, and Grace met me for lunch;

Abby didn't get to meet me for lunch because she was at school, but she sure did look precious on her way to school for Go Texan Day!

 One of my precious birthday lunch dates...

My other precious birthday lunch date...

...we had dinner with my dad and in-loves (in-laws). 


One of the biggest highlights of my day was getting to face time with the best friends that a girl could ask for.  While we are 2,000 miles apart, getting to participate in girls night was such a treat that my excitement and laughter woke up 2 out of the 3 sleeping children in our house…  Oops!

Excuse my confused look, they were coaching me through how to take a screen shot picture :-)

Now on to the hilariousness that Abigail and Andrew exude…  You see, the kids couldn't fathom the idea that I might not have a "birthday party," so they have been on a mission to plan me a birthday party for weeks now.  Since the Olympics, the kids have been obsessed with the idea of ice skating (Abigail wants to do the pairs figure skating and Andrew hockey).  I made the mistake of JOKINGLY stating "maybe mommy should have her birthday party at the ice skating rink"…  Game over, we were committed!  The kids wanted to know when they would get an invitation to my party, so my less than crafty skills were exhausted as I made them invitations for my ice skating party and the day (Saturday) couldn't get here fast enough (for them :-).  We actually had a fantastic time ice skating and I'm pretty sure that if we let them, they would still be ice skating.  My favorite part about my "birthday party" was how hard the kids made me laugh with their comments…

Before we got on the ice, Andrew said "Mommy don't do any twirls so you don't hurt yourself!"

Andrew was convinced if we cut a hole in the ice, there would be a walrus underneath.  Abby saw a lady (adult) skating confidently (nothing fancy, just skating…) to which she said "she's good, she must be in the Olympics!"  Of course she is, you know that event in the Olympics where people get a medal for skating in a circle without having wobbly legs or falling down?   That must be the one :-).
The kids were fearless and did far better than we could have imaged, however, you know what it's like trying to keep the kids on their feet while playing linebacker (keeping all the other wobbly legged kids and ADULTS from taking your kids out).  We sat down for a snack while they cleaned the ice and Andrew said "I didn't know that skating would be so easy"…  yes dear, easy when your mommy and daddy are working overtime to keep all 46 pounds of you on your feet :-).  I convinced Andrew to skate with David a good bit of the time because Abby is only 40 pounds (soaking wet) and far more coordinated, making my job easier.

Today, Sunday, David and I led worship in Children's Ministry which is always a blessed time, Grace spent the entire time (an hour and a half) in her class at church and loved it, and then Andrew had his last basketball game...  


Here is what I'm praying over you this week, sweet Village (just in case you are anything like me ;-).

Two of my biggest temptations are to worry and hurry, so I'm praying that we can cling to this verse and this Christ-like trait...

"Philippians 4:6 says, “Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

AND


Much love, appreciation and (((HUGS)))!