Sunday, January 25, 2015

Exciting new adventure!!!

Hey Village,  I have to tell y'all about an adventure/opportunity that we are super excited about...

Let me rewind about 2 and a half years, I was about 32 weeks pregnant and we had just received the diagnosis that I had always feared and begged God to protect us from (oh, my earthly heart)...  our little girl had Down Syndrome!  Despite the fact that I've always known in my heart that God had a child with Down Syndrome in our future, my ability to hold on to a teeny tiny glimmer of hope that my intuition was wrong, came to a screeching halt with that diagnosis and I would spend weeks asking God...  and David, in whom God used to answer all of my tough theological questions and love me patiently and well through the process.  I will never forget when our precious Aunt Kathy sent me a calendar from an organization called Gigi's Playhouse.  This calendar had a ton of large black and white photos of the most beautiful children with Down Syndrome I had ever seen.  As I flipped through this calendar, I could picture myself being the mommy of these children, in that moment I felt the sun peak through the dark cloud that I would often times find hovering over my head.  As I read more about Gigi's Playhouse, I was so excited about the opportunity that it would offer for our little girl.  At the same time, I wondered how the Lord might be able to use our whole family to serve others (I could even picture Abigail and Andrew joyfully volunteering there, doing what, I wasn't so sure, but something :-) at this amazing place.  There's just one problem, as I searched for our local Gigi's Playhouse...  there wasn't one. When Grace was about a year old I had the opportunity to meet a mother who had just had a baby with Down Syndrome (encouraging new parents of children with Down Syndrome is one of my favorite things in the world to do now) and we happen to live in the same neighborhood.  The instant that I met her I knew she would be a special friend and that she was a visionary.  It wasn't long before she asked me if I had ever heard about Gigi's Playhouse and went on to share about how her and her mom wanted to start one near us since we really don't have any local resources for children/adults with Down Syndrome, and families like ours.  You can imagine the excitement that I felt upon hearing her heart!  I was/am SO IN!!! This amazing momma (and her mom) have been instrumental in making this dream a reality and I couldn't be more excited about getting the opportunity to be a part of the process.  Here is a little bit about what makes Gigi's Playhouse so special and where we are in the journey of bringing Gigi's to Sugar Land (I took this straight from the website):

Our Story: Hello Sugar Land area! We are a group of dedicated family members excited to bring GiGi’s Playhouse to our own backyard. GiGi’s Playhouse is a unique Down syndrome organization providing a permanent brick and mortar location offering direct educational and therapeutic programs to individuals with Down syndrome, their families, and the community. All ages are welcome from pre-natal to adults. The positive and uplifting environment of GiGi’s Sugar Land will empower those with Down syndrome to reach their highest potential.
GiGi’s custom, research-based curriculum works towards advancing literacy, math skills, gross and fine motor skills, improving low muscle tone, building self-esteem, preparing for the workforce and more while fostering acceptance, awareness, and networking resources for parents, siblings, and the community. All programs are FREE of charge: cost will not be a barrier to achievement!
STATUS: We are in the beginning stages of opening a GiGi’s Playhouse in the west side of Houston. While GiGi’s Playhouse programs are always free to families, they are not free to us. We must raise $100,000 to cover the first year’s operating costs before we can open the doors and begin to provide services. Expenses include rent, build-out of our location, equipment, educational materials and therapy supplies just to name a few. As we get closer to opening, a specific list of items needed will be provided. Right now, monetary gifts are in greatest demand to help us get to that point. GiGi’s Playhouse is a 501c3 non-profit organization. All monetary donations are tax deductible. Donate HERE today!
BECOME A PART OF OUR GROWING COMMUNITY: Please add your name to our MAILING LIST to receive ongoing updates about GiGi’s Playhouse and our exciting progress here in Sugar Land. Also, complete our brief SURVEY so we can learn about your needs for our new GiGi’s Playhouse in Sugar Land!
VOLUNTEERS: GiGi’s cannot survive without volunteers! If you would like to help with an upcoming event or get involved in the programs we will be offering, please click HERE.
DONATIONS: Since all programs are FREE to families, we depend upon your generous donations. If you would like to DONATE FUNDS please click on the link below. All monetary donations are tax deductible. Every dollar helps!
THANK YOU! Thank you to all who have helped our startup process for GiGi’s Sugar Land and to all who have donated so far!
Please check this video out...

We would really love your support in whatever capacity possible, so will you please consider helping us in any of the following area:  pray for our team and all of the logistics, like us on facebook (search for Gigi's Playhouse Sugar Land), fill out a survey on the Gigi's Playhouse website, donate financially, add yourself to our mailing list for updates on our progress, share this information with any of your friends/family that would be interested in being a part of this exciting journey, etc.

Sunday, January 18, 2015

Highs and lows...

Update on Andrew-  he had his 6 year old well check appointment this week (just two months late) and we are still in disbelief that he is in the 80th percentile for height and 55th percentile for weight!  We aren't familiar with the upper half of the height chart so this is new territory for us ;-)!  

-I spoke with his ENT and we agreed that based on Andrew's CT scan images, surgery is the next best step for him.  His surgery date is scheduled for Feb. 5th and they will clean out his sinuses and take out his adenoids.  Will you please pray for a seamless surgery and recovery?  You would think that I'd be an old pro at this surgery stuff, after Grace having 5 open heart surgeries, but someone how I'm not, so I'm practicing giving my fears to the Lord since I know that He is not the author of fear, but the author of peace.  

This was a sweet reminder to me this week...

-Grace's teachers said that they videoed her during circle time (to show us just how into it she gets) and would show it to me on Tuesday!  I can't wait!  If I get their approval, I will post it here, so you can get a glimpse into Grace's world :-)!

This is Grace with the sweetest book that her bestie, Presley gave her...  It's all about how cool and special the scars on their chest are!

-We said goodbye to some precious friends that have said "yes, Lord" to a high calling as missionaries in Kenya.  Divya has taught/shown me what it means to bear one another burdens, rejoicing with those that rejoice, and mourning with those who mourn.  She has shown me the importance of having spirit led courage to not let a friend off the hook when they say they are "doing good."  She's one of the first people that stopped me in my tracks and, with love and sincerity in her eyes, said "no...  how are you really doing?"  I knew at that moment that she wasn't going to let me off the hook and despite the fact that it was late and we were exhausted she was willing to invest all night if needed to hear my heart; to say that I felt loved with a Christ like love is an understatement.  These are just a few examples of what makes Divya Fick the epitome of a sister in Christ.  I will miss her and her family terribly, but I have full confidence that the Atlantic Ocean can't keep us from doing life together.

This picture couldn't have been more fitting since Divya was the one person that Grace wanted to go to at their send off open house, after all Divya was the first person to meet Grace (besides David and I) after she was born and in the CVICU.  In fact, she was with me the first time that I got to see Grace after she was whisked away after being born and I couldn't see her for 24+ heartbreaking hours because I was on magnesium and had to stay in my hospital bed. 

Village, thank you for your support and prayers!  We love you!

Sunday, January 11, 2015

Dr's appointment updates...

Thank you so much for your prayers regarding Andrew's ENT appointment and Grace's cardiology appointment.  Here is a huge praiseworthy update:

-Remember I told you about how I was eager to meet the ENT Dr that Andrew had an appointment with because it was the ENT that I had wanted Grace to see, but he didn't have any openings when we needed to see him?  Well, he was everything that I'd hoped for, super smart, conservative in his approach/strategy, great bed side manner, and appears to treat each child as an individual versus feeling like your at a puppy mill.  All that being said, we came up with a few possible treatment scenarios based on what he saw on Andrew' most recent CT scan (the cd that the Allergist gave me with the images on them wasn't working, so he had to request that they send them over to him).  We are waiting to hear from him with his decision to either watch Andrew and see how he does, if he gets another sinus infection (or worse pneumonia) then proceed with an intervention, or put him on a longer course of antibiotics now to make sure that it is completely cleared up, or do surgery to clean out the sinuses and remove the adenoids.  We hope to hear back from him early this week.  Will you please pray for wisdom for the Dr to know what is the best strategy for Andrew in moving forward and that whatever it is would entail NO MORE sinus infection, pneumonia's, or complications?  Our little sweetie has already endured so much with such a great attitude, so we are praying that he can have some reprieve. Lastly, before he walked out of the room, I asked him if he would be willing to see Grace despite the fact that someone else in his group had seen her last year (remember, we are going to have a long standing relationship with her ENT, so I would really like to love him :-) and his response sealed the deal for me...  he said "I would be honored and happy to see her, Dr... (his partner) and I work interchangeably."  Now that is not the type of response that just rolls off of the tongue of a physician. SO GRATEFUL!!!

-Grace's cardiology appointment was full of blessings...  first and foremost, the gradient across her mitral valve was LESS than it was last echo!!!  Praise be to God because He's the only explanation for that!  Her cardiologist used the word "normal" when referring to Grace's heart.  Let me clarify, her heart is FAR from "normal," in fact in many ways her heart is sort of like a piece of fine machinery that is duct taped together, patched, and with spare parts rigged to do some of the most important work, but the fact that she referred to her hearts functionality as "normal" was music to my ears or heart  :-).  We also got the green light to try to do her next echo unsedated which will be an interesting attempt, but I look forward to her not having to be knocked out for her echo because it takes her most of the day before she's back to herself.  After waking up from her echo she feels drunk for hours, which means she's super cranky and wants to get down and walk, but we can't let her down because she can barely control her head, let alone her whole body.  Praying that she gets the memo that if she can lay still for her next echo (in three months), she won't have to get drunk anymore.  The other blessing came when we stepped off of the elevator and saw the surgeon that performed Grace's first open heart surgery at TCH (not Boston) and who would have done her subsequent surgeries.  David has run into him a few times with Grace during clinic visits and he came by to see Grace in the ICU when she crashed before being medically flown back to Boston.  However, that was the first time that I have seen him since he operated on Grace when she was two weeks old.  He is obviously very aware of Grace's case and I always wondered how he felt about our decision to go to Boston, and if our decision would make interacting with him awkward.  It is with much gratitude that I can say, he not only stopped to say hi (he chose to miss the elevator that he was waiting for to talk to us), but he showed genuine interest and concern for Grace (and our family) and our conversation was far from awkward, but instead a real blessing.

 Here's drunky doo...

-highlights of the weekend...  Andrew had his first basketball game where he made two baskets and played some good defense!  Our prayer was that he would get to feel a sense of accomplishment at his game because he is very aware that Abigail is pretty athletic, so we have been praying that he would find something that he could feel good about.
Another Andrew story came from church today, he has a sweet little girl with Up's in his class at church that he loves to try to play with and just be near her (I wonder where he gets it from).  When we picked him up from his class he was beaming and couldn't wait to tell us that when this sweet little girl got picked up by her parents, she called his name and gave him a hug (she initiated the hug :-).  He has been talking about that special moment all day long.  So simple, but so sweet!

-it's always a precious time for us to get to worship with Abigail and Grace (Andrew is already in his class at this time) at church.  Today was extra sweet because Abigail insisted on holding Grace the whole time (some how all 43 pounds of Abigail can some how carry 23 pounds of Gracie Doo for a long time) as they just worshipped together, while loving on one another.  It was one of those moments that make time stand still and the chaos of life fade into the background for just a moment.

I didn't get a picture of Abigail and Grace at church of course, but here is Abigail warming Tucker up after he came in from outside wet and shivering...

Grace goes back to school this week which is exciting for all of us... not because it's easier to have her at school all day, but because she loves and thrives at The Rise School so much, but I miss seeing her precious teachers and the staff too!

Village, we hope that each of you has a blessed week that is filled with joy both in the mundane moments and in the chaos too! 

Monday, January 5, 2015


Hope your 2015 is off to a great start!  We rang in the new year in San Antonio where we stayed for three nights, enjoying time with friends, Sea World (in 39 degree weather), swimming, and lots of laughs as Grace continues to crack us up with her new and old antics.  Here are some highlights...

Sea World in 39 degree weather (mid west family and friends that's nothing to you, but pretty freezing for us California/Texas folks :-)

-I was really looking forward to putting a movie on for the kids during the three hour drive to San Antonio, so that I could have some time to just talk to David (do you look forward to car rides so that you can actually talk to your spouse without any outside distractions, like I do?), however, Grace had other plans.  Here is what our three hour car ride consisted of, Grace saying OVER and OVER "mamma...  mamma...  mamma," when I would answer her, she would pretend she had something new to show me or she would just give me a giant smile.  The only way to get her to stop calling me (it was cute for the first hour, but then...) was to tell her that I was going to take a nap and pretend to sleep.  If I tried to talk to David quietly while I was "sleeping" my cover was blown and she was back to trying to get my attention.  
-Grace is officially tall enough to open doors...  you know what that means :-/
-Grace loves to lay on her tummy and do "the worm" (she learned it from Andrew), so if you see a little person walking and then drop to the floor and start moving her head and legs up and down, it's not the beginning of a temper tantrum, it's just Grace randomly busting out her worm.
-If Grace calls gets your attention and says "coo coo" while turning her finger in a circular motion near her ear, don't take it personally, she just likes to tell people that they are "coo coo" (I'm pretty sure Abigail taught her that).
-Grace still LOVES dogs, so the highlight of our trip to Sea World has to be the Pets Ahoy show where dogs, cats, pigs, birds, and even a skunk all do tricks.
-The big kids made it until midnight and Grace woke up during the count down, so she was awake for the New Year too!  Pretty special!!!

What is New Years Eve without a dance party...

Game playing and a movie...

-A quick glimpse into the minds and hearts of all members of the Ross family...  on the last day of our trip as we were packing up to head home, David made a trip to the car to begin loading it up and as he returned to the hotel room, flying through the door he says "You're going to be so jealous that you weren't just with me, I saw a downsy downstairs that is around Grace's age!"  The kids and I looked at each other and almost simultaneously said "hurry grab your stuff!" We were willing to accept the possibility that we may have left something behind (we hadn't had time to do a final check that we didn't forget anything) in hopes of getting to see and even better meet another downsy doo.  As we flew downstairs as fast as we could we made it just in time for us to conveniently run into the precious little girl (and her mom) who we were in search of.  We got to talk to her mom for a few minutes and gaze upon the sweetness of our girls interacting.  We affectionately call this type of situation a "downsy alert."  We had another "downsy alert" at Buccee's on the way to San Antonio where we spotted an adult with Up's that was there with his parents.  We stood behind them in the line that they were in (trying to think of something that we could order from that line even though we really didn't need or want anything from that station) just so we could be near them.  We loved getting to see that sweet family interact and the genuine smile and glance that this man's mother and I exchanged (once she saw Grace in my arms) was one of confirmation that we are on the same team and we share a secret that nobody else in that giant store knew...  we are on a priceless journey that only a family member of a special needs child/adult can totally understand...  I won't even try to explain the secret, but I will say that it's a journey that I begged God to spare me from for many, many years and it is the best "no" that He has ever given me.  Praising the Lord that He said "no" to my pleas to spare me from having a special needs child (specifically Up's) because His "no" meant that He was going to rock our world with a "yes" to a life that demands our eyes to be fixed on Him each day in order to survive, but the result would be (a cheesy quote from a song because that's what just popped in my head) "joy unspeakable, faith unsinkable, love unstoppable, anything is possible."  He didn't promise it would be easy and it is not, in fact it can be exhausting and overwhelming at times, a lot of times, but I wouldn't trade this journey for anything :-).

On a side note, this is one of the many reasons that I love the big Buccee's on the way to San Antonio...  look at all of the hand sanitizers in the bathroom!
-Grace thinks that she's one of the big kids now, so when she see's Abigail and Andrew wrestling or being silly, she gets right up in there with them (and makes her mommy very nervous).  The kids were having a blast a few nights ago, finding all different ways to create pyramids with Grace (I had to veto a lot of their suggestions because they were all sorts of crazy and not safe :-)...  

Here are just a few poses, the last one is everyone practicing their best Gracie smile...

Prayer request...
-Andrew has his ENT appointment on Thursday where they will decide if he needs his sinuses cleaned out surgically.  Will you please pray that this last round of antibiotics has cleared up the left side of his sinuses and that there won't be a need for any surgical intervention and that any exams or tests that are required would be painless and not traumatizing?
-Grace has a cardiology appointment on Friday.  Will you please pray that things are unchanged (the gradient across her mitral valve isn't any higher and nothing unexpected pops up) or even better than they were because God has shown us before that He can do that?

Thank you for being our Village!!!  We love you!!!