Monday, June 30, 2014

Appointment Results...

Thank you so much for those of you who have been praying for our girls' cardiology appointment today!  Praise the Lord that Abigail's heart looks good.  Her mitral valve is mildly leaky, but the anatomy of that valve and her aortic valve (I didn't even know that based on her previous echo, they were unsure if it was bicuspid or tricuspid... so glad I didn't know that prior to today) look "normal."  We don't have to follow up for 3 years to make sure that nothing has changed.  Grace didn't have an echo, but her exam went well.  Grace was sleeping during her exam (which I'm pretty sure is a first), so her Dr got a good listen of her heart and it was super quiet, which is a great thing!  Another huge praise is that, despite Grace having that super awful, nasty, terrible infection during the beginning of the month, she still gained a pound.  She's now tipping the chart at 19.5 lbs!  Of course, it would be uncharacteristic of Grace (and God :-) if there wasn't a bump on the roller coaster (just to make sure that our eyes are on Him and not our circumstances)...  when we went to change Grace's diaper after she got weighed and measured (and screamed her head off), we noticed the infamous DOTS on her tummy and back!  When I brought it to her Dr's attention we agreed that we should draw labs just to rule out leukemia (again).  Her labs came back looking very interesting...  the markers that they would look for to indicate leukemia weren't there, but a number of other findings left us scratching our head as to what it could be (one of which is the jump in her liver enzymes, etc).  It is our best guess that she is either still recovering from the super awful, nasty, terrible infection or has a new infectious process going on (she is definitely teething, but she could also have a cold).  We are going to redraw her labs in a week or so to see if things have resolved.  Will you please, please, please pray that all of Grace's numbers return to normal range and that leukemia wouldn't be discovered.  

Village, you are the best!  Thank you!!!

Sunday, June 29, 2014

We LOVE Family Camp!


We were at Family Camp this week, the best way that I can sum it up is to say that it was rejuvenating, exhausting, and amazing!  The speaker taught on Grace Based Parenting where we soaked up so much biblical insight on how to approach the high calling of parenting.   David and I also enjoyed some MUCH needed time together doing everything from a breakfast trail ride and cattle round up to playing pickle ball, baseball, and David making me run soccer drills.  Remember, David is the guy that doesn't know how to rest, so "free time" doesn't ever include relaxing.  Fortunately, I love getting to play sports together, even if it means that I get schooled :-).  



We had the opportunity to spend some precious family time during "family free time," doing everything from morning devotions, with our sweet "fast forward" counselor Pie Fly, whom we adore...




family worship every morning...

zip lining...



the "breath taker" (this was the kids first time) and let's just say that it's name is perfectly suited :-).  We were so very proud of both big kids for showing so much courage!


tubing and wake boarding... 


lots of swimming...


Abby loved her counselor "Sari"...

fun and silly theme nights...



David and Abby participated in the "color war"...

...while Andrew, Grace and I cheered them on!

play in the lagoon...

lots of sports...


dancing is a sport, right? :-)

"Club" where we all spend time dancing around and worshiping the Lord (this is always one of our favorite memories).

Grace LOVED "club" (clearly, her mommy did too :-)

Abigail's class performed in the talent show and it was rad!

The kids loved riding horses and Grace loved getting to meet the horses up close and personal (I'm pretty sure that she thought that they were big dogs).



Grace spent a lot of time with her counselors each day and she did wonderful, which gave us the freedom to truly enjoy ourselves.  While Grace was in her class she fell in love with her new best friend, Bella!  I love these girls as they are such a sweet picture of God's perfect and precious provision for us.  Y'all know Grace's story and sweet Bella was literally adopted off of the streets and is now a member of a fun, loving, and God honoring family.  
Grace loves Bella so much that she has continued to call for her all day since returning home from camp.  Bella has become a very special part of Grace's therapy, since Grace loves to look at this picture of her and Bella, I placed the picture at the end of the couch after she had pulled up and she "cruised" (walked along the side of the couch) for the very first time, so that she could get close enough to the picture to touch and kiss it.

The thing that makes Family Camp so different than any other vacation is the other "campers" (families that you get to see every year at Family Camp)...
We LOVE our Family Camp family!  They have graciously joined us on our Divinely designed roller coaster, since we found out about Grace's broken heart two days before we left for our first year of Family Camp.

The signature of Family Camp is... the AWESOME counselors!  They spend the entire week pouring into your family by serving you sacrificially and joyfully every minute of everyday (that explanation feels like such an understatement, but it's the best that I can do at this moment).  

This has to be our favorite counselor of all time!  "Hunka" has been such a special part of our family for the past 3 years.  I trust that the kids will see to it that we never lose touch with him :-).


The kids made "Hunka" a shirt to let him know how much they love him.

Lastly, we were overwhelmed (in the very best way) as we got to witness the way people (grown ups and kids alike) were drawn to Grace.  We couldn't walk more than a few steps at a time without someone coming up and wanting to talk to Grace.  Our heart would swell every time we got to see the joy that she naturally brings out in others and what the attention and love of others brings out in her (it is the manifestation of unconditional love and vulnerability).  It is unlike anything I've seen before, I'm just grateful that we get to be a small part of something so beautiful.  God is so good!
That just scratches the surface of the sweetness that is Pine Cove Family Camp.  If you have ever considered going and are on the fence, please reach out to me, so that I can convince you to go :-).

PRAYER REQUEST:  Abigail and Grace both have a cardiology appointment tomorrow morning.  Abigail will get an echo to take a closer look at her mitral valve because last time she was at the cardiologist they saw that she has mild mitral regurgitation.  Will you please pray specifically that the anatomy of her mitral valve (and the rest of her heart) looks totally normal and that the regurgitation never becomes a problem?  Please also pray for a good report for Grace.  She isn't getting an echo, this is just a follow up visit from her last hospital stay (from when she had the nasty virus a few weeks ago).

Thank you sweet Village!!!  We love and appreciate you!!!




Saturday, June 21, 2014

Exciting Times...

We have done a terrible job taking pictures lately, so I apologize that I don't have many to share, but I do have some fun updates on some of Grace's new "tricks"...

This week Grace decided to crawl (on all fours) and bear crawl all over the house.  She's been army crawling for a long time now, but has had NO interest in crawling on all fours until this week.  She also mastered...
drinking out of a straw!  This may not seem like that big of a milestone, but for kiddos with Up's, it's huge (it's also an important skill for speech development)!  She has also started trying to say more words versus signing them (YAY!)!  

This video doesn't show any of Grace's new words, but instead some of her most common words.  She always wants to know where her "Tither" and "Bubba" are.  This was part of our conversation right after I got her up from her nap.  She was wanting to know where her "Tither" was and even suggested that we call her :-)...  The big kids were swimming with my dad while David and I tried to pack and get things done around the house.
video

These all qualify as reasons to celebrate in our household (although our threshold for "reasons to celebrate" is pretty low, we like to celebrate everything :-).  Grace has taught us how to find joy, celebrate, and praise The Lord for ALL things, big and small.  This is one of many reasons why when people say, "I'm sorry," when hearing that we have a daughter with Up's, I REALLY want to respond with, "oh don't feel sorry for me, I feel sorry for you that you don't have a Downsy Doo :-)."  I haven't actually said that to anyone yet, for fear that it may not translate how I feel in my heart appropriately and somehow offend someone (my intent is simply that what seems to so many others as a sad thing is really such a treat!).

We are suppose to leave for Family Camp tomorrow!  Who's excited?!?! 
This crazy kiddo is... and the big kids are even more excited than Grace, so you can imagine the energy level in the Ross household!

Will you please continue to pray for health and safety before camp and during camp?  I have had to continually give my fears, that someone is going to get sick or hurt, over to the Lord repeatedly this week because that type of obstacle would not be foreign to our Divinely designed roller coaster of a journey :-).  Clinging to this verse...

1 Peter 5: 6-8: Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time.  Cast all your anxiety on him because he cares for you.  Be self-controlled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour.

In fact, already Andrew has a huge gash on his arm from taking a spill on his bike and TODAY he got a huge gash on the bottom of his foot while swimming at my parents house.  Also, Grace has been teething throughout the week (she's getting two teeth on the top and a couple of molars).  Your prayers for health and safety are greatly needed and appreciated.  Will you please also pray that Family Camp is a super blessed time for our whole family (a time to be refreshed, while pouring into to our family and the other families and counselors, and that we may grow closer to the Lord)?


Thank you for your prayers!  We love you, Village!!!


Sunday, June 15, 2014

Rapid fire update...

As I'm sure life is for most of you too, since the kids have been out of school and David and Grace have been home from the hospital, time has flown by at lightening speed...  so here's a rapid fire update of praises :-).

-Abigail had her 7 year old check up and she is our big little girl...  she is tipping the chart at the 8% for weight and 20% for height!  That's the biggest that she's ever been on the chart.  We truly love that God created her so tiny and tough, but her recent stats blew David and I away (she use to hang out at 4%).  In case you wonder where she (and Grace) get their "little" genes check out the girls in the Ross Family...

We went to see the play Little Mermaid this weekend in celebration of Abigail and Evie's 7th birthdays. 
I love each of the Ross ladies so much and am grateful that I get to call them family and friends!

-Abigail was having this random, infrequent, fleeting pain behind her belly button, so when I mentioned it to our ultra cautious pediatrician (whom we LOVE), she wanted Abby to get an ultrasound of her belly just to be safe.  Ultrasounds/echo's, etc have turned into an anxiety producing experience for me because they so often are followed by not so good news, but PRAISE the LORD that everything looked normal (it could be muscle related since she's a super active and agile kiddo).

-Grace was given the go ahead to stop her breathing treatment (which has allowed David and I a little more sleep because we no longer have to giver her breathing treatments in the middle of the night, which then result in a wired child).  


-Grace got her FIRST hair cut (just a teeny tiny trim because her daddy loves her hair long).

-Grace has turned into the prayer police.  If she thinks that we have forgotten grace or night time prayers (or if we take longer than she thinks appropriate), she will fold her hands, shake them at you, get your attention and give you this look...

Look at the "prayer police" making sure everyone is focused...

-David has had the whole family counting down to the World Cup and now that it's here, our lives are all things soccer.  It's sweet to see David and Abigail love the game of soccer together from playing outside together to getting to eat dinner on the floor in the living room, so that they don't miss any of the game.  We can't wait for the first USA game tomorrow!

-I have been so honored and blessed by a few of you that have delivered on my heart felt request to share your specific prayer requests with me, so that I can stand with you in prayer.  Y'all so diligently cover us in prayer, will you please do us the honor of letting us know how we can be praying specifically for you?  Please feel free to e-mail, message, call, or text David or I :-).

*** It's Father's Day and I'm celebrating the three most special Dad's I know...  

One with such a servants heart (and somehow always makes me laugh)...  My Father-in-love!

One that is the world's best encourager and always makes sure that we all know how much we are loved...  My Daddy!

And, the man that is... our hero because he is everything a Daddy (and Husband) could be, and more!

First thing in the morning snuggles (Andrew's hair speaks for itself)...

I can't believe that we leave for Family Camp in a week from today.  It's hard for me to wrap my mind around that with all that has been going on in our lives (Grace in the hospital, etc), will you please pray for our preparation, health, and hearts?  

Thank you and we love you!!!