Monday, December 30, 2013

Answered prayers with a cherry on top...

God answered our prayers with a cherry on top!  Grace's cardiologist and the tech that did her echo were amazed at "how great her heart looks."

Check out Grace's pretty new mitral valve!  This may look like a picture of outer space to you and if it does, that's ok, just celebrate along with us anyway :-)

Dr. Morris (her cardiologist) had to actually close her eyes, hold the stethoscope ear pieces further in her ears, and really focus to hear Grace's heart because it was so quiet!  The reason that this is so significant is because in the past she didn't have to work hard at all to hear Grace's noisy heart (murmurs, gallop, etc).  Her chest x-ray looked great compared to her previous x-rays.  There is still some fluid on her lungs and her heart is still enlarged, but she said that's common for all that she's been through and they both take a while to heal, so over time we should see improvements.  It's hard to believe that Grace isn't on any heart medications now, except lasiks, and the only reason she's not weaning her on the lasiks right how is because she doesn't want to do it at the same time that she's weaning all of her heavy duty pain medications because if there are side effects, it's hard to distinguish the cause.  It's crazy to think that she may go from 8 medications, given multiple times a day, to just 2 in the not too distant future.  God is already SO GOOD, but the cherry on top will hopefully impact kiddos like Gracie now and in the future.  Dr. Morris said that because of us, one of her colleagues and a fellow are interested in looking into their (TCH's) data over the past 10 years of kids with Up's and a single ventricle to assess their outcomes since nobody in the department knows.  The results of this study that they are doing could radically change the way they treat patients like Grace moving forward.  After all, a recent study published in 2010 found that the mortality of children with Up's and a Fontan (single ventricle) are 2.5 times greater than a "typical" child.  The conclusion of that study states, "Down syndrome was found to be an independent parameter associated with a significantly higher risk for mortality in the early postoperative period after Fontan surgery."  We are continually humbled and grateful that God would allow us to be a part of a much bigger and more important picture than what we can see right before our eyes, at this moment.  We shouldn't be surprised because we know that He is SO much bigger than what we can wrap our finite minds around, but we remain in "awe" of Him!

These two silly sweeties make life that much…   sweeter :-)

We know that this journey is far from over, so thank you for both rejoicing with us and praying us through this Divinely designed roller coaster!  Please continue to pray for health and healing for our family (especially our Gracie Doo)!  We love and appreciate you, sweet Village!

GRACIE STRONG (In God's strength)

Sunday, December 29, 2013

Cousins Christmas!

We participated in our 4th Christmas celebration of the year today (we are really trying to drag this thing out :-) and this time it was with "the cousins!"


The rest of the CRAZIES… :-)

Our celebration was blessed with yummy food, game playing, cousins wrestling match, laughs, opening presents, football watching, and lovin' on Gracie (poor lil hunnie is having a bad withdrawal day)!

I loved our gift exchange strategy this year… each family picked the name of another family and bought them a family game.  It's the perfect gift exchange strategy for a family that loves to play games!

We got SORRY! Sliders.  It's super fun, you should try it :-)

Will you please continue to pray that ALL sickness would flee from our house and stay away, far away?  Will you please also continue to pray for Grace's cardiology appointment tomorrow?  She has a sedated echo at 7:30 am and then an appointment with her cardiologist at 8:30 am.  Thank you!!!

GRACIE STRONG (In God's strength)

Saturday, December 28, 2013

Home sweet home...

We spent today in major recovery mode after a long day of travel yesterday…  

 Waiting for our flight to come HOME...

Grace has definitely stolen the show these days…  Abby and Andrew use to always want to sit by their mommy, now it's all about Gracie.  I don't blame them a bit :-)

All day yesterday and periodically throughout the week last week, I thought about everything that I needed to do when we got home (pick up the house since we left in sort of a whirlwind, change Grace's sheets on her bed and get her room ready for her return, figure out supper when we got home, etc).  I shouldn't be surprised because they think of everything, but when we arrived home (exhausted and starving) from the airport (later than we had planned because our flight was delayed), my mother and sister-in-love had our favorite meal ready to eat and they had spent a good bit of the day cleaning our house (moms out there, you know what a treat it is to come home to the freshly vacuumed lines in your carpet), completed laundry, and my personal favorite, a Lysoled house (remember, when we left Abby was just getting over the flu or something similar), and some of Grace's favorite toys were Cloroxed!  THANK YOU MARY AND BECCA!!!  After we stuffed our faces, we celebrated Christmas with David's parents (our 3rd Christmas present celebration)!

Abigail's favorite gift from Crack and Toot (David's parents) was a James Avery charm bracelet.   The most special part about it is that her first charm is the same one that I wear on my necklace (a cross with a heart in the middle).  

Andrew's favorite gift was his new bike!

Grace's favorite present was...

The wrapping paper!

Besides the wrapping paper, we all loved the new book that she got called "The Tickle Monster."  It even comes with Tickle Monster gloves, that I tested out on Andrew...

David and I have been fighting a cold for the past 3 days, will you please pray that we fully recover quickly and that Grace stays healthy?  Please also pray for Grace's cardiology appointment on Monday.  It feels all to familiar because last time Grace was discharged from Boston, it was at her first cardiology appointment (on a Monday) that the wheels fell off.  Remember, they tried to do a sedated echo on her and her oxygen levels went super low and she was struggling to breathe… and you know how that story unfolded from there :-/.  Will you please pray that this cardiology appointment is the complete opposite and that her cardiologist (and everyone else that knows her case) will be blown away by how amazing her heart looks on echo, sounds on exam (it sounds good to my untrained ear with my new stethoscope :-), how clear her chest X-ray looks, and how awesome she looks clinically?  

Much love, thanks and blessings, sweet Village!!!

GRACIE STRONG (in God's strength)

Friday, December 27, 2013

ALL home in Texas!

This is David, hence the brevity of the post - We have ALL made it back home to Texas!!!  Praise God!!!  We are exhausted from a lack of sleep last night and a long day of travel, so we will post more tomorrow, but we wanted to let everyone know that we are all home and we greatly appreciate your prayers to God in getting us here.

Thursday, December 26, 2013

Let it snow, let it snow, let it snow...

We seriously prayed for snow because we knew how much it would mean to the kids, so it felt like a sweet hug from God to see those beautiful snowflakes begin to fall! 

All they talked about was wanting it to snow so that they could make a snowman...

Make snow angels...

How stoked does Abby look?

Grace had another ROUGH night and start to the day today as she continues to endure these nasty withdrawls. We were debating whether to take her in for a clinic visit today or early tomorrow morning just to make sure that her fussiness and vomiting were only withdrawl related and to make sure she's not getting dehydrated from the vomiting; however, the clinic was closed so we would have had to take her to the ER. David and I planned to pray about it and watch Grace closely for a clear sign as to what we should do. God gave us the reassurance and peace that we were looking for because Grace was her joyful self, without fussing or vomiting the rest of the day and we were able to identify a pattern of how she responds at various times and days to her wean schedule. Village, will you please pray that she sleeps well tonight and that she will be fuss free and vomit free all day tomorrow because (Lord willing) the plan is to return home to Texas tomorrow, AS A FAMILY OF 5!!!  Grace has a clinic appointment on Monday with her cardiologist in Texas, so will you please pray that Grace doesn't pull any funny business between now and then and that at her appointment on Monday, her cardiologist would be blown away by how amazing her heart looks and sounds and that God would get all the glory?  I can't even wrap my mind around everything that we need to do to get our lives back in order in Texas (after being in survival mode for the past 3 months), but none of that matters as long as we are all under the same roof at HOME! Thank you for your faithful prayers, sweet Village! We love you!

GRACIE STRONG (in God's strength)!

Wednesday, December 25, 2013


Praying each of you had the Merriest of Christmas'!!!

Out of the mouths of our babes, "this was the best Christmas ever!" If Gracie could talk, I'm pretty sure she would add "except for feeling like a drug addict going through withdrawls." But she makes withdrawls look good :-), to God be the glory!

We just finished singing "The 12 Days of Christmas" with motions and despite the fact that it some how always turns into a silly mosh pit, it was the perfect ending to a far from normal, but beyond blessed Christmas!!!  Much love and ((( BIG HUGS))) to each of you!

Tuesday, December 24, 2013

Merry ALMOST Christmas!

Merry ALMOST Christmas, sweet Viilage! This is going to be a short post because with each minute that passes tonight is one step closer to another Tooth Fairy failure...

She lost her other front tooth this morning!

...and then you increase the stakes because there's always a chance that Santa will fall asleep on the job too!  I so appreciate Abby and Andrew's heart about these fun make believe characters... I told Abby she better go to sleep fast because Santa and the Tooth Fairy won't come if she's awake, to which her reply was very matter of fact, "that's right, Gracie might keep the Tooth Fairy and Santa up all night and they might be too tired to bring presents." After dinner we were talking about something Santa and reindeer related and Andrew was going on about what Santa was up to tonight to the point that I began looking at him sort of strange because it was so random.  Abby quickly said "remember Mommy, we don't want to spoil it for any kids that play the Santa game, so in case any of them can hear..." I look back at Andrew and he's nodding his head and giving me the eyes to say "that's exactly what I'm doing," as he continues on about what Santa's is up tonight. I love the hearts of these kids!  When the kids were babies is when we were praying and talking about what our family traditions would look like and we had great peace about telling the kids the truth about Santa, but making sure that they understood that most families play "the Santa game," so they have always been so cautious not to spoil Santa for any kids or even adults, "just in case they still believe in Santa!" Don't get me wrong, we aren't anti-Santa, in fact the kids still love Santa, they just know that he isn't responsible for deciding if they are worthy of presents and then delivering those presents.  I say all of that because I really feel like another praise this year is our decision to not play "the Santa game" because Abby is at an age and has a personality that likes to know the "why" behind everything (just like her mommy), and she's very serious about always telling the truth about things, so I can't help but think about how awful it would be if this was the Christmas that she/they figured out the truth about Santa, that would be too much for such a crazy season in our lives!

Today, we went swimming and attempted to go to a Christmas Eve service at an old beautiful church nearby, but they were full when we got there.  We ended up going to dinner and doing our own Christmas Eve service in our hotel room!

On our way to dinner...  Check out the kids precious outfits! Thank you Rebecca (and Mathew) for making the girls these beautiful matching dresses (you know how much I love "matchy matchy") and having Andrew's awesome shirt personalized! 

My Besties from California sent the kids Christmas PJ's and hats!!! They totally read my mind because I really wanted to get the kids Christmas PJ's to make Christmas in the hotel more festive, but didn't end up having time to pull it (or a lot of other things) off! So many of you picked up the slack in all of the areas where I dropped the ball (or would have) or had great need!  Thank you all for richly blessing us in the most perfect of ways!

In case you need a laugh, here are some of the many faces of Gracie Doo...

One of my favorites are the repeated zurberts...

We are celebrating the HOPE that Jesus brought to all the earth on this amazing upcoming Christmas Day! 

Monday, December 23, 2013

FUN trip back to Boston Children's Hospital

We had a blast today as a family!  Grace has been doing so much better on a slower methadone wean and the rest of the family continues to remain healthy, praise God!  This morning, we continued to enjoy some good ole' family time in the hotel room, which included some serious wrestling.  Then, this afternoon we ventured over to Boston Children's Hospital and showed Abigail and Andrew where Grace had been living the last two months.  They also had the opportunity to meet some of Grace's nurses, nurse practitioners, and even her cardiologist, Dr. Marx.  The kids even got to enjoy the infamous ball maze in the lobby at Boston Children's.  

Oh yeah, did I mention that part of the fun of our time in Boston has been the different modes of transportation that the kids have been able to take...well, today it was experiencing a taxi cab for the first time.  We ended our day with a trip to The Cheesecake Factory, thanks to a gift card we received from one of Kristi's high school classmates.  Thank you for all that you have done for our family and for making our Christmas a special one, in fact it is so much fun, we just might need to do something like this again for another Christmas (minus the hospital part)!

It's me- check out the level of joy that we were blessed with this morning (please disregard my bed head and I just woke up face :-).  We were watching Andrew entertaining Grace by running around and then jump into a chair while it spins...
PJ party while watching the 49er game tonight...

Enjoying a yummy dinner AND we have enough left on our gift card for another meal! Woo Hoo! Thanks Dave!!!

Sunday, December 22, 2013

Great day in Boston...

While David and I were up pretty much every hour for most of the night last night (either with Grace or Andrew, who woke up and had trouble going back to sleep, so we had a little party in the middle of the night), cumulatively we got a decent amount of sleep.  We had a great day as a family taking the subway to the Aquarium.  

On the subway...

Ready for the Aquarium... 
Abby, Andrew, David, and I all agreed that our favorite part was the seals, the giant sea turtle, watching the penguins shake their tail feathers, and touching the sting rays and other sea creatures. Grace's favorite part was people watching, waving, and blowing kisses to everyone.  It is impossible to get Grace to nap in public because her favorite thing to do is people watch and try to get them to talk to her. It's as if she forgets about her pain and withdrawls some when she's out and about. Love our little ham! 

Miss joyful at dinner...

We also built a ginger bread house that Andrew began begging to eat the second we finished building it. 

Tomorrow, we are going to Grace's hospital to pick up a prescription for more methadone (since they have slowed down her weaning schedule) and for Abby and Andrew to hopefully meet Grace's super special cardiologist and nurses. 

Feeling very grateful and blessed today! Will you please pray for continued healing and health for Grace and the rest of our family and that the rest of our trip would be uneventful and blessed?  Oh! And since we know God cares about big and little details, will you please pray that we get some snow while we are here (currently the weather says it could snow on Thursday), the kids would be elated?

Loving you from one of our favorite cities, sweet Village!  (((Hugs)))

Saturday, December 21, 2013

Reunited and it feels so good :-)

What a glorious reunion! The kids didn't know that Grace had been discharged from the hospital, so the plan we told them was that we were going to drop our bags off in the hotel room and then head to the hospital to see Grace and David.  They also didn't know about Marriott's generous upgrade, so they didn't expect a hotel with 2 rooms. I had them set down their suitcases and explore the awesome room...

....So bummed the iPad won't let me post the video :-(. I will be sure to post it when we get home.

Here are some pictures of our sweet reunion after a long 2 and a half months...

Soooo grateful for a large hotel room for many reasons, but one benefit I hadn't thought about is the extra space for when these two wrestle (as they love to do), I can worry a little less (just a little less though :-) about someone going to the ER.

It didn't take long for us to be reminded that our lives are still far from normal. Grace is toward the end of her methadone wean and the Dr's and nurses weren't kidding when they said that the weaning process at the lower doses is the roughest! Poor Grace, in a 24 hour time frame she hadn't slept more than 3 hours because she just can't settle herself, so she's fussy from exhaustion and discomfort (it doesn't help that she's getting two new teeth too), but can't rest.  Therefore, David and I got little to no sleep last night, but it's so worth it!  The joy that Grace exudes with her precious smile, twinkle in her eye, and endless waves and kisses can melt even the most sleep deprived mommy and daddy's hearts. We called the hospital to see if they thought we should slow down her wean schedule and to make sure there isn't anything else that we should be concerned about. They just called us back and said that it all sounds like withdrawl symptoms, so we are going to slow down her wean schedule.  I'm so grateful that we are still in Boston to troubleshoot these types of issues with the medical team that knows Gracie best! Please pray for wisdom, comfort, and rest for Grace and the rest of us. 

When we arrived to the hote, we were blessed to find that some friends of friends had sent us the most beautiful Christmas basket. Also, a sweet friend from high school and his colleagues pulled off a movie like blessing.  They sent beautifully wrapped gifts for the kids to our hotel and to our home in Texas, as well as a gift certificate to Cheesecake Factory (a family favorite that is in the mall that our hotel is attached to, so we don't even have to go outside). It felt like a movie to arrive to the hotel to find that Santa had already came, making it look very special and festive. The decorations that David repurposed from Grace's hospital room (thanks to the sweet care package our friends sent him) and the cute table top Christmas tree that he purchased actually make it feel like Christmas! 

I have more amazing details to share about Abby's sweet Christmas Party at school yesterday and the amazing staff and families at Campbell Elementary, but I'm going to hold off until I have more pictures to bring the story to life :-).

This journey is far from over, but as long as God goes before us and you continue to walk along side of us, we can do it! Thank you for all of your prayers and support, sweet Village!

Friday, December 20, 2013

It's really happening...

Nothing to eventful today......yet!  By 12:00pm today I had Grace bathed and I had showered and shaved.  

Then, I feel like I was a little kid again when I knew my grandparents were driving into town and I would stare out the window all day waiting for them to arrive.  That's what I've been doing today, pacing this giant hotel room, staring out the window at the city below, waiting impatiently for my precious cargo to arrive from Texas. Kristi and the kids were on the airplane and in flight by 5:30 pm (CT) and it looks like the plane is arriving early at 9:45 pm (ET). 

Please pray their airplane arrives safely and the car service gets them here safely. Oh what a joyous reunion this will be!!!!  Thank you so much to everyone for making this possible!  We wouldn't have been able to do it without going into debt if it wasn't for your help. We love y'all and praise God for you!

Thursday, December 19, 2013

One more day!

Thank you to everyone for your prayers this morning!  We arrived at Boston Children's this morning and it was very weird going in as outpatient, rather than inpatient.

Surprisingly, Grace did not need an echo this morning (it was a mistake on the discharge paperwork since she just had one less than a week ago).  She just had an X-Ray (which looked the same, if not better than before), an EKG, blood pressure check, and a check of oxgyen saturations (which was at 98%, which is great).  Grace's cardiologist, Dr. Marx, mentioned that he continues to be perplexed by Grace and has learned a lot from her case.  He is very surprised to see how quickly and how well she responded to having a new valve, and so are we.  Glory be to the Lord because He is the only reason and explanation for her recovery!

Grace was worn out from her appointment and ready for a nap right when we got back to the hotel

It's me-  As I've mentioned before, I have a hard time not editing David's post whenever I read it because it doesn't seem to communicate the level of emotion behind some of details :-).  It certainly isn't a flaw about David, in fact I love the way that God created Him.  For one, he is far less emotional than I am which serves us well during the craziness of our lives, therefore, he communicates with less emotion (that is probably a trait of most men versus woman and I'm confident God has great purpose for that difference in all of our lives).  For instance, David mentioned that Grace's oxygen saturations were "great" at 98% and her chest x-ray being "the same or better than her last one" didn't even get an adjective :-)….  I would say that they are phenomenal and unbelievable!  Oh! Another huge praise is that Grace pooped before her appointment today!

Now that we got that settled, here is an update on the Ross roller coaster…  Praise the Lord, Abby had her last dose of Tylenol before going to bed last night and has been fever free since the middle of the night (yes, I took her temperature about 5 times in the middle of the night/morning with the temporal thermometer :-).  I bought a new thermometer today, so now I can check their temperatures on the forehead, armpit, and orally.  I really wanted another one to compare my old faithful thermometer to, in an effort to ensure that I was getting accurate reads.  Poor Grace (and David), I use to take her temperature multiple times a day just for fun, now I'm armed with two temperature checkers!  So far, Andrew and I have not caught the yuckies, please, please, please pray that we stay well (and David and Gracie too)!  Please also continue to pray that Abigail's fever doesn't make a surprise reappearance.

We got to FaceTime with David and Grace this evening and it was such a blessing to see Grace's personality back in full effect!  She was quite the charmer as she ran through all of her tricks, giving us lots of kisses (especially my new favorite Mickey Mouse kisses)!  She even showed us her new "seashells" (teeth).  When her first top tooth was coming in (last time that David and I were in Boston together) it looked like a little seashell coming through and for some reason it cracked us up whenever we would talk about the "seashell." We can't wait to get our hands on our little Gracie Doo (and Daddy too)!  The enemy has been working overtime in our lives lately, will you please pray for HEALTH, a seamless preparation, departure, vacation, and return from Boston?

Thank you, sweet village!  We have certainly felt your prayers!  Please keep them coming :-)