Saturday, February 22, 2014

"Doing it for Gracie!"

After last weeks post, I received a question about how Grace is doing as it relates to the Up's development chart (milestones) and what it's like raising her.  It's a great question, but the truth is, I don't have a clue where Grace is on the Up's development chart because we have sort of subconsciously chosen not to care much about it since she's been forming her own uncharted, Divinely devised path and survival has been our main focus thus far.  Since she's spent a good bit of her life either sedated, laying in a hospital bed, or on sternal precautions (where she's not suppose to lay on her tummy, be picked up under the arms, etc), she certainly has some ground to make up as it relates to her development.  For instance, she was army crawling before her 3rd surgery in early October, but she barely started army crawling comfortably again about 2 weeks ago (now we call her a little salamander because she can shimmy across the floor so fast).  She isn't anywhere near trying to pull up or walk, but instead she's working on crawling on all fours versus an army crawl, going from sitting to laying on her tummy by shifting her weight to her side and then on to her tummy (instead of going through the center splits, which she prefers to do and she does it so fast, it's hard to even catch her doing it :-), and going from laying on her tummy to pushing herself up to a sitting position.  Grace sees 3 different therapists 3-4 times per month each and we are now adding in Physical Therapy for which we are really excited about. She has only had an evaluation with the guy who will be her PT, but he has a lot of great strategies as it relates to retraining Grace's mind to believe that she can do certain things (crawl on all fours versus army crawl, etc) that are unfamiliar, he pushes her pretty hard and Grace doesn't fuss at him when he does… so far at least (that's super exciting and a huge praise).  During his evaluation, he was very impressed with her muscle strength, how good she looks, and how well she is thriving after ALL that she has been through.  It's hard to wrap our minds around the reality of this, but we set her goal of walking for 6 months from now, she will be exactly 2 years old then.  Children with Up's (that haven't had 5 open heart surgeries) typically walk around two years old, but there's no telling what Gracie Doo has in store for us :-).

That leads me to the prayer request that I have been talking about…  With Abigail and Andrew we pray each year about what we should do with them for school about their teachers, etc.  We have quickly learned that when you have a child with special needs, the stakes are that much higher and more complex as we pray through the best age and place to begin some sort of "school" where she can be around other children her age, learn to follow directions, etc.  Shortly after learning about Grace's Up's diagnosis, we heard about the The Rise School.  A week after Grace was born we did a tour of the school, so that we could get her on the waiting list and from the moment we walked through the front door we knew there was something very special about that school.  The school is made up of 70% children with Up's and 30% typical kids, they have one teacher and two aids in every class (one of the helpers is a special needs adult, often times with Down's Syndrome), they receive all of their therapies while at school, and they have created an environment that truly maximizes the learning ability of the amazing children they serve.  The school goes up until 5 years old and 98% of their students go on to attend a fully integrated classroom.  I really can't say enough great things about the school, however, there are a couple of things that make the decision to send Grace there a little more difficult.  First of all, it's not cheap (and I have seen with my own eyes why…  it is truly amazing), it costs $1,700 per month (without any financial aid), they go to school year round (with a few weeks at a time off her and there), and it is about 35 minutes from our house.  It happens to be located right outside the Medical Center, where I work, so it wouldn't be terribly inconvenient to get her to school everyday, but we would have to come up with a plan for pick up since she would get out of school around 2:30 pm.  When I first heard about and saw The Rise School, I was DETERMINED that Grace would go there, but it didn't take long for God to work on my heart and reveal to me that my motives were a little earthly.  You see, my reason for wanting her to go there so badly was so she could be the smartest child with Up's possible or as least Up's as possible.  Once I was reminded that Grace's story is already written, God knows exactly how smart she is going to be (and everything else about her too), I realized that there are many other factors to this decision that are just as important as Grace's education (how it is going to impact our family as a whole being stretched thin financially, Grace still being in school when the big kids are on Summer break, the logistics of getting her to and from school, etc).  We had great peace about the possibility of sending Grace to the same preschool that Abby and Andrew have gone too.  While they haven't ever had a child with Up's there, they are more than willing to welcome Grace, we know and trust the school a lot, and their philosophy on early childhood education (learning through play, etc) is very similar to The Rise School.  THEN…  a few months ago David and I have felt a pull back towards The Rise School for a couple of key reasons, since Grace has been set back so much with her surgery history, the fact that The Rise School is highly accredited and recognized for the cleanly environment that they provide (that makes this germaphobe momma smile :-), and it seems like we have more easily thought through the logistics component (there may be car pooling options, etc).  Just like we do with the big kids, we pray through there education situation one year at a time, therefore, we are praying that God would make His will clear for Grace's "education" this next school year clear.  The first step is waiting to find out if there is even a spot for Grace at The Rise School, which we won't know until some time in March (we had to pass up our spot last year because Grace was in the thick of surgeries and unable to attend school at the time), apply for financial aid, and in the mean time we will register her at the preschool that A and A have gone to and trust that God will make His will clear to us.

Here is where you, Village, come in, will you please pray that God's will for Grace's education would be clear to us and that we would have peace and excitement about whatever His will is?

I apologize for being so long winded...  here is a quick look at what we did this morning!
We had a Fun Run Fundraiser for Abigail's Elementary School!  We all did the one mile race, except Abigail and David ran fast while Andrew, Grace, and I took it a little slower.  I couldn't have been more proud of Abby, she pushed it so hard in an effort to finish first in her grade level (which I think she did, if not second) that she crossed the finish line with tears in her eyes because she had a side ache, was loosing steam, and she wanted to finish strong for Gracie, but she never once complained.  Andrew, like last year, got a lift a few times during the race, but he sprinted to the finish line yelling "I'm doing it for Gracie!"  Grace was happy to be along for the ride with her own bib number and all!  It was so sweet to see what a little celebrity Grace was as we waited for the race to start with kids gathered all around her stroller doting over her!  

Abby and David waiting for the 1st grade gun to go off to start the race...

Abby and Andrew high five each other as they passed each other on the course...

Andrew "doing it for Gracie!"

Post race photo…

Village, hope you have a blessed weekend!  (((HUGE HUGS)))

Sunday, February 16, 2014

More milestones...

Hello sweet Village!!!  Well, the beginning of the week seems like forever ago, so I can't really remember any exciting details to share with you there, but we certainly had some firsts this weekend!

1) Andrew had his first sleep over!  He was SO excited and I was SO worried about the potential of him missing us at night, me missing him, and the fact that it felt like such a big boy milestone.  While Andrew was at his sleepover, Abby and Gracie had a play date with my parents (thanks dad and KK!), my most precious Valentine and I….  wait for it….  HAD A DATE NIGHT!!!  Our first date night in almost 5 months was pure sweetness and I seriously felt like we were 19 years old again :-).  I have to admit that after saying good bye to Andrew (before he left for his sleep over), I did shed a tear or two because somehow my crazy mind couldn't help but fast forward to when he gets married and how hard it will be to hand over his heart to his wife (what a lame-o, huh?).  With his daddy as the most amazing earthly example of how to love well, he has such a tender heart that knows just how to woo his momma!  He has this little monologue that he says at least once a day (often times, multiple times a day), it goes something like this…  "I love you Mommy!  You are the best Mommy ever!  I wouldn't want any other Mommy.  I'm so grateful that God gave me you because you are so good to me. I love you!"  If I have had to apologize to him for barking at him, etc he will even throw in "and no matter what you do wrong, I will always forgive you because I love you!"  You see how he just melts my heart?  AND humbles me SO MUCH?  Every time he says this sort of sweetness, my heart melts and then I struggle with feeling so undeserving of those kind words because I'm SO FAR from the best mommy (like really far :-).  I try to battle the temptation to dismiss Andrew's sweet words because it is by God's grace that He allows us to see each other through His (God's) eyes (broken vessels that have been redeemed by the blood of Christ and clothed in His righteousness).  Andrew will be one amazing husband, but until then, I'm honored to be his momma (and Abby and Gracie's too of course)!

Andrew snuggling Abby before his sleepover...
 Andrew and Jo Jo watching a movie at their sleepover…  Jo Jo is focused :-)

2)  Some of you have asked what Grace is up to these days… well, she is a precious mix of sheer joyfulness and all kinds of rascally!  She loves to dance, talk to the dogs, tell stories, play with her Bubba and Sissy, boycott sign language (we try to teach her signs and she shows us that she has a better idea of how to communicate whether it's by trying to say something with facial expressions, sounds, etc) and food (she will play with her people food, but wants nothing to do with it being in her mouth), when I try to get her to say "momma," she smiles at me and says "dadda," she prefers doing the center splits to get from sitting to being on her tummy (instead of bending her leg and leaning to the side like her therapist wants her to), etc.  That's just a glimpse into the world of Gracie Doo these days.  At this pace, I'm sure she is going to end up being a girly girl loving dolls, etc just to throw me for a loop:-).  Those of you who know Abby, and myself, know that we are not such big fans of princesses, dolls, etc, but instead prefer sports…  for instance, I walked into the family room today after finishing putting away clothes in our bed room and Abby is sitting on the couch by herself watching hockey on the Olympics, and remember she cried when the 49ers lost because "football season is over and it's so long until it starts up again!"  I love her!  All that to say, it would be like Grace to love princesses and be a true girlie girl just to keep her momma on her toes!

Sweet Sisters at Abby's Valentine's Day Party!


Abby practicing some cheer stunts with Daddy!  Please overlook the explosion of Gracie's toys that has taken place in our living room.  Where's Waldo (i.e. Gracie), she snuck away?

More Sissy fun!  Grace loved borrowing her friend Noah's car...

3)  Grace went into the nursery at church today for the second time in her life (the first time was probably 9 months ago) and she did great!  Praise the Lord!

I still have a prayer request to share with you regarding what to do with Grace for "school" next year, but you have stuck it out for so long if you are still with me reading this post, so I will wait until the next post :-).  Will you please continue to pray for overall health for our family and everyone's tickers (Grace has her next cardiology appointment the beginning of March, Abby has one in June, and Andrew toward the end of the year)?  Please also pray that we would be sensitive to the Lord's leading as we seek His will for any and all family decisions?  Thank you sweet Village!  We love you!

Sunday, February 9, 2014

Milestones and reflections...

Hope y'all have had a great week!  Here is a run down as to what we have been up to, complete with many milestones and reflections…

-Abby and her cheerleading team performed another pom routine on Saturday.  I was so very proud of them because they learned it in just one practice (that happened to be 5 days before the game… plenty of time to forget it) and they did it barely being able to hear the music because the sound system wasn't working, so I had to use my little cd player that was plugged in on the side of the gym.  Way to go Upward Diamonds!!!
video

-Andrew played his best basketball game yet today!  He played such strong defense that he got his second medal of the season for having a positive attitude and playing some serious defense.  We were so proud of him for being so focused, applying all that he's been learning, giving 110%, and yet still finding time to wave to his mommy from the court.  This kid melts my heart…

Grace is saying "whach u got over dare?"

*A few milestones were hit this weekend…
-For the first time ever, when our angelic offspring come in our room at 7:01 am (they know they can't get out of bed until 7:00 am), ready to get up and at 'em for the day, David and I were exceptionally sluggish due to Grace's desire to party until 1:00 am and then she went for round two at 4:00 am….  so, we told the kids to go play in Andrew's room while we caught some zzzzzz's and they did it joyfully and efficiently!  WHY HADN'T WE THOUGHT OF THAT SOONER?!?!

-We have always loved the Olympics, but the last Summer Olympics that took place two years ago will forever elicit an emotional response for me because we watched the Olympics all day and night while on our "baby moon," the weekend that we got the call from the geneticists that Grace had Up's. Fortunately, the Olympics are on during wee hours of the night and morning because as David was off in dream land, dreaming about having the little Downsy Doo that he was so excited to have, I was busy watching the Olympics, writing in my prayer journal, and cringing every time Grace moved in my tummy as I wondered what our life would look like with a special needs child.  I hate to admit that is how I felt toward Grace that weekend, but it is true…  however, now I can watch the Olympics with Gracie by our side at wee hours of the night or morning, while getting to admire God's goodness in every squint of her eyes, scrunch of her nose, and stories she tells as she chatters and growls away.  

Poor Grace…  too bad nobody loves her and wants to spend every waking moment with her :-)



-Grace rocked her first ponytail today!  Abby's hair wasn't long enough for a ponytail until she was almost 3 years old.

-This is terribly embarrassing to admit, but we finally hung up pictures of Grace in the house (in addition to new, updated pictures of Abby and Andrew).  Previously we only had one picture of Grace, hanging in the house.
This is the ONE picture that we had hanging…
What can I say, we have just been pre-occupied with everything other than decorating our house the past 17 months.  Baby pictures of Abby still adorn Grace's room though, they look so much alike that I'm hoping Grace will never realize that they aren't her :-).

-After Grace's 5th open heart surgery at Boston Children's Hospital, a professional photographer came by Grace's room and took pictures of her.  Those pictures just arrived in the mail and we were blessed with a sweet reminder of where we were as a family just 2 months ago.  God is faithful to His promises!  He has never left or forsaken us, His grace IS sufficient, His loves endures forever, He uses all things for good for those who love Him!

I LOVE these pics, but Grace looks like a doll to me...



This is CHD (congenital heart defect) awareness week, so here is another scary fact about the mortality associated with CHD in infants...


God was really showing off when He created Grace…  Her "specialness" accounts for almost half of this pie chart (CHD, her extra chromosome and I'm sure some of the other anomalies that she has endured would fall under "other" :-).


GRACIE STRONG (in God's Strength)!!!

Village, thank you for your prayerful love and support!  Please keep praying for us as you feel led and I will share a new prayer request with y'all next post.  MUCH LOVE AND APPRECIATION!!!

Sunday, February 2, 2014

A weeks worth of updates...

A week's worth of updates…  Grace had her second cardiology appointment on Wednesday.  I wasn't able to attend because it wasn't first thing in the morning and I had to work.  It's always hard for me to take, trust, and rest with information that is filtered through my amazing, outstanding, world class, and basically phenomenal husband (and Daddy) because I like to hear things with my own two ears and ask a thousand questions :-), however, it sounds like our wonderful cardiologist is still blown away by how different and great Grace's heart sounds!  Praise the Lord!  It just so happens that our old cardiologist (remember, she broke my heart a number of times and didn't do a very good job of making us feel like we had options or even a say in Grace's care, however, God used her in our lives in a big way :-) was the one reading echo's on Wednesday, so she got to see Grace's new and improved WHOLE ticker (not half a heart).  We trust that God can, will, and has used our journey as a teachable moment for us and so many others (in the medical field and otherwise)!

Drunk Grace after her sedated echo...

For the first time in 4 months…  Grace slept through the night 3 nights this week!  You know that the first words out of my mouth when our morning alarm went off was "David!  Hurry!  Go make sure Grace is still breathing!!!"  We continue to praise the Lord for such a welcome and wonderful break through!

We went to a fundraiser at Andrew's school, that we look forward to every year, and Grace couldn't decide if she loved Swatson the Skeeter's mascot (she waved to him all night) or if she was terrified of him (she was mortified if he got too close, check out her face in the pic).  
Both Abigail and Andrew are anti getting their face painted for some reason, but Abigail had a heart painted on her face for Grace (it was truly a sacrificial act :-).

I've had the pleasure of co-coaching Abigail's cheerleading team, beginning the past couple of weeks, and they performed their first pom routine at the game yesterday.  I'm so proud of these girls…

In case you can't tell, Abby is the little one in the front :-)
video

Andrew was a little, or a lot, distracted the first half of his basketball game, but after a pep talk from daddy, he did FANTASTIC the second half!  So proud of him!

Andrew and I continue to battle this annoying cough that gets worse every time the weather changes, which is so very frustrating (especially living in Texas where it is literally freezing and then the next day in the 70's), but I keep trying to tell myself that the coughing is a good ab work out, so that pretty much counts as going to the gym, right?  Will you please pray for health for our family, especially Grace, because she likes to give her germaphobe momma a near heartache with her desire to lick restaurant tables, etc.  When we try to redirect her, she gives us a rascally smile and tries to do it again.  Lord give us the strength and patience to parent this sweet and rascally angel :-).

We have spent the weekend watching old (HILARIOUS) videos of the kids, having light saber wars, making paper airplanes, family movie night (we watched Hook, one of our favorite movies), leading worship for the Children's Ministry, and we are looking forward to watching the Super Bowl, but can't decide who to root for :-/.  We agreed that we will let Grace decide once the game starts.  We will get behind whatever team Grace cheers for first.

Speaking of Grace and cheering, I LOVE that a number of cheer gyms have a special needs cheer squad and NCA cheer competitions even have a special needs cheer division.  SAY WHAT?!?!  Between the Sparkle Effect (the program that helps organize special needs cheer squads at public high schools) and these All Star cheer gyms that I recently learned about, I can barely contain my excitement.  Check out the video of these fierce and precious cheerleaders that I found on YouTube…

Hey Village!  Not a day goes by that we don't talk about y'all as a family, pray for you, and praise God for you.  Will you please pray that Grace continues to sleep through the night, that her liver enzymes get back into normal range by her next blood test in 2 weeks (they think the reason that they went out of whack is because she had a cold, we hope that's all that it was), that she will be interested in eating people food again, her vomiting would stop, that she will take off in her crawling, etc (she's been on sternal precaution for the past 8 weeks making it difficult to work on crawling, etc), that she and the rest of the family would be healthy, and of course that her heart stays healthy.  I know that's a pretty full prayer list, but I wanted to to make sure to share everything on my heart.  Even if you just pray for one of these items, we would be super grateful!  THANK YOU SO MUCH, SWEET VILLAGE!!!