3 hours left...

Somehow life seems to move at a lightening speed and many days I feel like I'm just hanging on for dear life, but it is a sweet ride never the less.  Here are some random, funny, and praiseworthy events over the past week or so.

-An area in my life that I can be tempted to give into worry is when it comes to the kids health (especially Grace).  I fear someone in the house getting sick because if Grace gets sick it could mean a hospital stay, if the big kids get sick it's so hard to keep them from giving it to Grace (it's hard to keep your hand and lips off of her no matter how hard you try) and I hate for them to have to miss school (they really do love school and nobody likes to get behind).  Grace had a tummy bug a few weeks ago and I couldn't stop thinking about what a finely tuned dance it was (which was a blessing to watch unfold)...  as David and I were getting ready one morning, Andrew comes running full speed into our bathroom to tell us to come quickly because Grace was throwing up.  As I rushed to Grace in the front room, I see Abigail telling Grace, "It's okay, Grace," while catching the throw up in her hands, so that it wouldn't get on the rug (I'm telling you, she's already got some crazy good mommy skills).  I was so proud of the kids for having such a great strategy of teamwork in caring for Grace.  Abigail caught the throw up while sending Andrew to get help.  After the chaos of the morning settled down, I began to worry if Abigail washed her hands well enough after catching the throw up.  She is usually VERY good about joining me in my hand washing, cleaning, and lysol endeavors; however, outside of squirting the hand soap in her hands for her I didn't get to watch how thoroughly she washed them.  All I could picture was that nasty tummy bug making it's way through our whole house.  I've continued to give my worry to the Lord and turn my "what if's" to "even if's," but the fear of sickness likes to lurk around every corner, so I have to stay on guard, keeping my eyes on the Lord, not my circumstances or "what if's."  Praise the Lord that we dodged the tummy bug bullet from a few weeks ago, so please pray that our family continues to stay healthy.  

Sickie Grace :-(

"Thank you for taking care of me Sissy!"

-weekends usually involve at least two soccer games, except last week Abby had a tournament, so we had 4 games last weekend.  Her team played up an age group (she is U9, but they played against U10 girls).  The girls they played against were much bigger than them (especially bigger than Abby, who is already pint size for her age), but in one particular game the size difference was just down right comical.  I have to say that the girl Abby was defending in this picture was a gentle giant, in that she was a great soccer player, however she didn't throw her size around in an unfair, nasty way (like some teams did).  I seriously wanted to find her parents to tell them what an amazing daughter they had. 

Sorry it's a picture of a picture on my phone.

Speaking of pint sized, this was a funny moment that happened this weekend.  I looked at Abby in her pajamas and wondered why they have to make girls shorts so short these days.  After further inspection, I realized that the reason for the daisy dukes is because my 8 year old was wearing my 3 year old's pajama shorts that were actually a size 24 months!  Despite being short, they fit her pretty good!  

-Grace has been going pee pee and poo poo in the potty most of the time these days.  I was especially proud of her for going pee pee in the potty at a restaurant and friends houses (unfamiliar places to her).  At my most recent parent conference with Grace's (super awesome) teacher, she said she thought Grace was ready to potty train, as in wear panties to school when we are ready, so that is what we are working towards.  So grateful to have such an amazing team of people at the Rise School who know and love Grace as if she's their own.  Here is her precious class at school...

These kids seriously love each other. I love to hear Grace tell me stories about each of them.

They had a pumpkin patch at school this week and I was impressed with Grace's pumping picking skills.  Her teacher said that she sat on all of the pumpkins to decide which one she wanted to take home.  She certainly picked a winner because the pumpkin that she brought home is a perfect place to sit.

Random school pics...

Grace choosing a snack

Tickling the baby...

-Andrew had a school project where we had to make a scarecrow.  As I've mentioned before, I'm FAR from crafty, so anytime I hear that the kids have a project I get anxious.  Two years ago when Abigail had to make her scarecrow, my mother in love was living with us because David and Grace were in the hospital in Boston, so she took the lead on all things creative.  I was a little lost to say the least, as to when I was going to have time to get supplies, much less help Andrew come up with an idea for this scarecrow.  Once again she came to my rescue by helping Andrew develop his idea and brought a ton of supplies for us to get creative with.  Andrew and I actually enjoyed doing this project together, despite the burns I sustained on my fingers from using a glue gun.  I loved to see and hear all of Andrew's creative ideas that I didn't know exactly how to execute, but he sure did :-).  Here is his masterpiece...

Our handsome Cub Scout...

Besties being all kinds of silly...

***There are THREE hours left (until 10:00 pm CST) to get your Grace's Village shirt!  Thank you to each and every one of you who have shown your love and support by buying a shirt and/or donated to Gigi's Playhouse Sugar Land! It is because of you that we met and exceeded our goal, so thank you, thank you, thank you!  I get an email each time someone buys a shirt, so each time I see the name of the person/family who bought a shirt(s) my heart is humbled and grateful, almost to tears (no joke), because of how much your support means to me and the bigger goal of bringing a Gigi's Playhouse to our local community.  Please know that I praise the Lord for you often!  

Who's excited about Gigi's Playhouse SUGAR LAND?!?!

I feel like I have finally been able to take a breath this week after the whirlwind of suspected leukemia diagnosis (praise God, we got confirmation the Grace doesn't have it at this point); Grace got a nasty tummy bug that was miserable; so we watched and prayed that nobody else would get it (after all, Abigail's mommy instincts kicked in when Grace started throwing up, she caught it in her hands while sending Andrew to come get David and I); cardiology appointment that ran the risk of telling us that we would have to head back to Boston through the holidays (remember it was 2 years ago at this exact time that David and Grace were heading into a 2 and a half month stay in Boston because Grace's heart was so sick, but we got to be reunited in Boston as a family for Christmas with the generous support of so many of you), but we got a green light to wait another 3 months to recheck her heart, which means we can spend the holidays at home, together!  God's grace once again proved to be sufficient as there were days that I felt like I was drowning over the past couple of weeks.

I can't think of a better way to celebrate the end of an overwhelming week than to have participated in an amazing Gigi's Playhouse Sugar Land fundraiser last Saturday.  The event was more than I could have ever expected as I watched friends, family, and our community join together in the vision that the sky is the limit for children/adults with Up's (Down Syndrome).  Not only are these kiddos lives valuable, but the willingness of people to open their hearts, give their time, talent, and money to give all children and adults in our community with Up's the opportunities (various therapies, tutoring, social interactions, exercise programs, opportunities to raise awareness and facilitate inclusion, FREE OF CHARGE) to be all that God created them to be is truly priceless!  The opportunity to get to be a part of the start up committee and board is really a dream come true.  I'm inspired daily by this lady's (and her sweet mom) commitment to the vision.  You see, Gigi's Playhouse has been in my heart since we got Grace's diagnosis while I was about 32 weeks pregnant.  I couldn't begin to wrap my mind around what our life was going to look like until Aunt Kathy sent me a Gigi's Playhouse calendar that was full of the most beautiful black and white photos of children with Down Syndrome.  It was at that moment that the almond shaped eyes that plagued me for so long as I feared ever having a child with Down Syndrome (this irrational fear was in the back of my mind since the moment we conceived Abigail, our oldest daughter who is 8 years old) became beautiful, full of hope and life.  It was an overjoyed google search for our local Gigi's that turned into the sadness and disbelief that the great state of Texas had ZERO Gigi's Playhouses in the state.  While I'm not a native Texan and California will always feel like home, one thing that I've learned since living here for almost 10 years is that everything IS bigger in Texas and Texans take great pride in their state (as they should :-).  We had plenty of other things to distract us from the lack of a Gigi's in Texas as we fought for Grace's life, but in the middle of that fight I met one of my dear friends and hero, Ammie.  She had just had her daughter, Sadie...

a few weeks prior to our Divinely appointed meeting (thanks to our mutual friend, Ashley) at a Mexican restaurant in our neighborhood.  While I was just excited to meet her and encourage the daylights out of her by sharing with her that her life wasn't just going to be ok with this unexpected Down Syndrome diagnosis, it was going to be awesome!  Little did I know, that as I was there to encourage her, she would be the one to lead and encourage me by taking the lead on making the dream of Gigi's Playhouse in Sugar Land a reality.  It was at that meeting she said that her and her mom had heard about Gigi's and wanted to start one.  If you are anything like me, you have a lot of dreams, but many of them seem unrealistic, but not for Ammie!  Her and her mom... 

Ammie

Her momma, Amanda

...had a dream and despite not having experience starting a nonprofit organization, being a wife, and a busy working mom of two little people she has led the charge in making this dream a reality.  Her drive (through blood, sweat, and tears) and can do attitude inspires me daily.  I have never felt like this dream was more of reality until last Saturday's fundraiser...  I'm humbled to be among so many incredible people who are on the committee, board, or support the Gigi's vision in one way or another.  I pray that everyone who has invested in Gigi's Playhouse Sugar Land will know they are literally changing the course of history for generations to come, leaving a legacy of hope and belief in children that are genetically enhanced.  

Dear friends that are all in on Gigi's!

Great music...  I finally learned the Nae Nae, just in time to realize that it's now out of date and now I need to learn the Quan!

Love these two who happen to be Cruz's parents...

Of course there was BBQ...

And boots...

Ammie's precious parents!

Paddles used for the paddle raise...

The giving tree (or ladder, remember it is a construction theme :-)

If you're still reading this, thanks for sticking with me!  One last thing...  There are only 7 days left to order your Grace's Village shirt to support Gigi's Playhouse Sugar Land!  Please join the team and help us meet our goal, we are just over half way there with only a week left.  Here is the link for easy access https://www.booster.com/graces-village-2015

THANK YOU!!!

Praise worthy update...

HUGE PRAISE!!!  So, Grace came down with a nasty tummy bug yesterday (we can't catch a break over here).  It was so sad to see her literally throw up all day long, while desperately wanting water, but not being able to have any because she would just throw it right back up.  Our initial concern was, could it be her heart, but the blessing in disguise is that it was a tummy bug.  We were afraid that this new illness would require us to reschedule Grace's cardiology appointment AGAIN, but praise the Lord that she was well enough to go to her cardiology appointment today and her echo looked UNCHANGED (even with the fact that she is just getting over an illness, which can make your heart work harder).  This means that we get another 3 months until we have to go back for our next cardiology appointment!  We are beyond grateful!!!

Grace's Village members...  In case you didn't see on Facebook, we now have Women's fit and Youth size t-shirts available!  Just a reminder that all proceeds go to Gigi's Play House Sugar Land :-).  Huge thanks to everyone that has already bought a shirt, you have no idea how much that means to us!  Here is the link:  https://www.booster.com/graces-village-2015

Your prayers have been heard and felt, thank you!!!

longest shortest 24 hours...

We met with Dr. Mahoney (the chief of hematology at TCH and my hero) today!  He might be one of the most kind and intelligent physicians that I know (that's sort of saying a lot, since we see a number of Dr's with Grace and I interact with Dr's everyday for my job :-). He took the time to explain each lab value that was of interest and helped me to understand that Grace's numbers that are out of whack could be "normal" for her, since children with Down Syndrome can often times have bone marrow dysfunction, but that doesn't mean it's leukemia.  After a thorough history, exam, and new labs (her third lab draw in three days) he said that there is no reason to do a bone marrow biopsy because he can confidently say that "at this moment, she doesn't have leukemia"!!!  TO GOD BE THE GLORY!!!  He was clear and honest about saying that he can't say that she won't develop leukemia, but he helped me understand what lab values, signs, and symptoms we need to watch for in moving forward.  Apparently, there is a gene mutation (common in children with Down Syndrome) that they can test for (via a simple blood test) that has shown to be a good predictor of future risk for leukemia, so we will have that test done shortly.  Once again, the Lord has used this scare to remind us what's really important in life and it's not what many of us concern ourselves with.  It IS about knowing, loving, and trusting the Lord regardless of our circumstances and the opportunity that we have to love  others well!  Y'all have loved us so well through this most recent scare, as well as everyone who has been there before this.  Thank you for every prayer you flooded heaven with, and the encouraging words you took the time to text, type, or speak.  Thank you for offering to feed us, love on our big kids, be a listening ear, and everything in between.

October is Down Syndrome Awareness month, you are each a special and integral part of Grace's Village, so please consider helping us celebrate Down Syndrome and our Gracie Doo by purchasing a Grace's Village shirt.  All proceeds will go to Gigi's Play House Sugar Land (a Down Syndrome resource center serving children/adults of all ages) that will be opening on Dec. 5th, 2015!  If you would like more information about Gigi's Playhouse, please visit http://gigisplayhouse.org/sugarland.  We will also wear these shirts at the Buddy Walk Houston on November 14, 2015.  Please come walk with us if you live anywhere near the Houston area!  If you don't live in Houston, or Texas for that matter, we would love it if you wear your shirt on November 14th and post a picture of yourself so we can make a photo book of Grace's Village members sporting their shirt :-).

***I'M WORKING ON MAKING YOUTH SIZES AVAILABLE (hopefully by Monday they will be added :-).

Please click on this link to order your shirt- https://www.booster.com/graces-village-2015

THANK YOU, VILLAGE!!!

Update on Grace...

Well, in the past 4 hours my heart has gone from completely broken to hopeful and overflowing with gratitude...

At our appointment with the hematologist today, we learned that Grace's labs look better than they did 2 weeks ago (praise the Lord), but still wacky in a couple key areas.  The wacky labs and the fact that Grace has Up's (remember children and adults with Up's are more likely to get leukemia) caused the Dr to want to do a bone biopsy ASAP because she suspects ALL or AML (leukemia).  The Dr who we saw today was at Memorial Hermann, which is the children's hospital across the street from Texas Children's Hospital (TCH is where we see our cardiologist, endocrinology, etc).  The reason we went to Memorial Hermann is because we were told that we would have to wait a while to get an appointment at TCH, so we should take the first available appointment.  I left that appointment heart broken that our baby would have to endure a painful bone biopsy and likely be diagnosed with leukemia.  I tried to keep my mind from wandering through all the "what if's", but instead focus on the "even if's" ("even if" she has cancer we will get through it in God's strength).  Once I got in the car by myself (David drove home with Grace in his car) I cranked up the worship music and had a really good cry.  The two songs that stuck out to me was Amazing Grace and the one where the chorus says "Jesus at the center of it all."  These two songs served as great reminders that God's got this!  One thing that kept weighing on my heart was that if we were going to have to battle cancer, I wanted her at TCH, so I sent a message to a friend who I recently learned works at TCH in the hematology department and told her the news we had received.  I pulled up to my friends house to pick up Abigail and Andrew, when I saw that I already had a message back from that friend requesting my phone number and when she called me moments later she assured me that Grace could and would be seen by the hematologists at TCH and that she had already begun talking to others in the department about Grace and they too were committed to helping us out.  The peace that came over me after speaking with my sweet friend is indescribable, but that was just the beginning of the blessing.  That conversation took place at 6:00 pm, at 7:30 pm my phone rang and it was the chief of hematology at TCH, Dr. Mahoney!  This man has 40+ years of experience and treats countless children with Up's, therefore, he is extremely knowledgable to say the least, but it's his kindness and gentleness that make him absolutely, positively amazing.  We talked about Grace's medical history, labs, etc to which he stated that he does NOT see a reason to do a bone biopsy at this point and reassured me that he does not think that Grace has leukemia at this time; however, he would like to follow her closely to make sure things don't progress into leukemia.  The phone call in the evening, when he is likely with his family, etc blessed my socks off to say the least, but then he went on to say that he has clinic on Wednesdays, so he could see Grace on Wednesday, but if I felt like I would like to see him sooner so that I'm not worrying over the weekend, he would have the clinic call me first thing in the morning in case I wanted them to squeeze us in tomorrow.  What?!?!  Who does that?!?! Good thing we were on the phone versus in person because I might injure the poor guy with the worlds biggest hug.  I apologize for the long story, but the details are too amazing to leave out because God deserves maximum glory and y'all deserve to know how powerful your prayers are!  We can't thank you enough for flooding heaven with prayers on our behalf and for encouraging us as we ride this Divinely designed roller coaster.  Please keep the prayers and praises coming because we are not out of the woods yet.  THANK YOU, sweet, precious, and faithful Village!!!

Grace has had two blood draws in two days (could turn into three in three days).  This little rockstar walked right back, climbed up in David's lap, as they lowered the arm rest she laid her arm out ready for what she knew she was there for and didn't shed a tear when they drew her blood.  She proceeded to joyfully walked out and proudly show me her bandaid where they drew her blood (David goes back with her for blood draws because I'm a wuss).  That is an example of God's peace that surpasses comprehension because I still can't believe it!