Wednesday, December 31, 2008

Smith Family Christmas in Pictures

Christmas Eve

Luke's Christmas outfit: What a big boy in his button-up shirt and vest!

Luke, Auntie Andee, me and Auntie Jenny dancing to "Proud Mary".

More dancing and clapping!

Daddy and Luke sharing a Christmas smooch.

After a wonderful afternoon and evening at my dad's, opening presents, eating Omaha steaks and playing with new toys, we headed down to my mom's house to spend the night. Here is Luke in his new Christmas jammies:

Christmas Day

Luke woke up at 6:30 on Christmas morning, ready to see what Santa brought. My poor little brother (he's 15) got a taste of his own medicine this morning as he used to be the one to wake everyone else up by banging pots and pans. Now it was Luke's turn to wake the sleepyhead up!

Luke loved opening the presents and throwing the wrapping paper into Papa's garbage bag.

New Little People town!

Papa and Luke playing with Elmo

If he wasn't in diapers, I bet Luke would have wet his pants he was laughing so hard at Uncle Evan.

Roger and I took Luke home for a mid-day nap and he (and I!) slept for almost 3 hours! With our second wind, we headed back down to my mom's for a yummy dinner, board games and pie.

We feel so blessed this year, looking back on all that was 2008. And we look forward to what God is going to do in 2009! We also look forward to our belated Christmas with Roger's side of the family in February!

Happy New Year everyone! Thank you for checking in on us.

Monday, December 29, 2008

The best Christmas gift came a little late

Hands down the best gift Rog and I received this year was hearing from Dr. Stefanelli how great Luke is doing and how good his heart is pumping away! So good, in fact, that he is scheduling us for our next appointment in SIX months. We knew that Luke was doing well leading up to this appointment — eating well, growing, good color and energy — but there is always that thought in the back of your mind that something could be wrong. It was a gift today to be reassured that we can trust that when we think Luke's doing well, he is doing well.

The other piece of good news is that Dr. S. thinks Luke is ready to drop his Lasix and Spironolactone. We will keep him on Diuril for now, but great news to get to drop two diuretics! Luke has always struggled with effusions and holding onto fluid post-surgery, but Dr. S. thinks we are far enough out that Luke's lymph system is completely healed and dropping these doses shouldn't negatively impact him at all. The good thing is that on Luke, we can spot fluid retention very easily.

So we'll go from 3 meds in the morning and 2 at night to 1 med in the morning and 2 at night (plus his aspirin every other day)!

I wish I had brought my camera because this appointment was the first time they had Luke weighed and measured the "big boy" way. He stood against the wall for his height (like Elmo) and stood on the scale for his weight. Our baby's growin' up!

It was very interesting seeing the difference in Luke's reaction to the stickers and machines even from three months ago. This time around, he was having no part of the EKG or blood pressure procedures. The first 5-10 minutes of the echo was rough, too. He cried and pushed the wand away and kept saying, "go home, mama's car". I'm wondering if at this age they have a harder time when they don't have a say in what's happening to them. We made it through and with a sucker, a movie and an extra echo wand, the tech got almost 20 minutes of pictures! We never did get the EKG, however. Oh well.

I don't want to borrow worry, but yesterday's appointment felt like a glimpse of the Fontan. Luke is so much more verbal than even three months ago and can say what he wants and doesn't want. I've heard another heart mom say the first two surgeries are the hardest on the parents and the third is hardest on the child. But I have seen Luke's resilience and believe in faith that he will come through the Fontan strong and fighting.

God is Good all the time, He is the same yesterday, today and tomorrow!

Saturday, December 27, 2008

Upcoming cardiologist appointment

Roger and I are asking for prayer for Luke's cardiology appointment on Monday, December 29. It's been three months since we've seen Dr. S. and we are asking for prayer that everything looks fantastic with Luke's heart. Specifically: His sat's would be in the 88-90% range; his echo would show no concerns and good heart function; his ekg would be normal; and his weight would be up.

Thank you for praying for us!

I'm hoping to get some Christmas pictures posted later today. We had a wonderful Christmas and we hope you all did too!!!

Thursday, December 18, 2008

Snow days!

Not sure how 1/2" of snow qualifies the title "Winter Storm 2008" on the news, but nonetheless, we enjoyed that 1/2"!

Since it doesn't snow too often in western Washington, Luke's snow outfit is anything but "official", but too cute not to share:

What you can't see are his footed jammies underneath his coats with his sweatpants over the top.

Thomas the Train rain boots, hee hee.

The power of a thank you

The power of a thank you is that it blesses the "thank-er" as much as the "thank-ee". World Vision currently has an employee campaign goal to call 60,000 donors in December to simply say thank you for their support of World Vision and the hurting children and families we serve.

Management has asked that every employee sign up for a two-hour shift to make thank you calls. I volunteered yesterday morning and although a majority of my "thank you's" were left on answering machines, I did get to thank several people personally. Many I could tell were stunned that it was a simple thank you call and not a request for giving. But I hope all were blessed to be told how appreciated they were.

So, after two hours of saying thank you, I was, as you can imagine, in a very grateful mood! I thought I would take a few moments here to say those powerful words a few more times:
  • Thank you to all of Luke's grandparents for loving us enough to enter into this journey with Luke with your whole hearts.
  • Thank you, Dr. Stefanelli, for caring for Luke like he was your own. And for giving us your phone numbers, knowing we would use them! You have gone above and beyond for us.
  • Thank you, Dr. Cohen, for using your surgical gifts to help save our son's life.
  • Thank you to Nurses Jen, Jodi and Melissa at NW Children's Heart Center. We feel like you are part of our family.
  • Thank you to everyone who has prayed for Luke. God hears and honors our prayers. Our peace throughout this process has much to do with your prayers for us.
  • Thank you, Lester family, for showing us a present-day example of Romans 4:18: "Against all hope, Abraham in hope believed..."
  • Thank you to Children's Hospital for making children and their parents your priority.
  • Thank you to World Vision and the Puyallup School District for giving Roger and me the time we needed to be with Luke.
I pray that God gives YOU many reasons to be thankful today!

Wednesday, December 10, 2008

For the record...

...So I never forget:
  • Luke is semi-obsessed with teriyaki food, "chicken and rice". Any parking lot we pull into I hear from the back, "chicken and rice! chicken and rice!" Yesterday, I was on the phone with my sister who lives in L.A. and I was having him show off some of his new sayings. We had him say, "Frosty the Snowman" and "Obey" and "Merry Christmas". I paused, saying, "um...what else should we have you say, Luke?" and out comes, "chicken and rice!"

  • We were reading Luke's current favorite book tonight, "Where Is Little Reynard" by Joyce Carol Oates and we got to the page with the picture of the cat looking out the window to the right. All of a sudden Luke says exuberantly, "high five!"

  • Luke tried to put Mr. Potato Head's shoes on his feet today.

  • Someone named Luke often likes to make known how things should be done when playing. At Nana's the other day, they were playing in the pea gravel and Nana asked him if he was ready to go for a bike ride. Luke's response? "No bike. No helmet. Nana sit!" He doesn't know what he wants, does he?

  • His "yes" is "O-kay!" I will be sad when he switches to "yes"—or more likely "yeah" with a shrug and an eye-roll =)

  • Bob the Builder can do no wrong in Luke's eyes.

  • He loves playing in the water—laundry room sink, bathtub, kitchen sink, he's not picky. Don't tell him, but he's getting a water table for Christmas!

  • He is starting to understand the concept of stalling. At bedtime, he'll ask for "more book" and after prayers he says, "more pray Dada".
We couldn't love you more, Luke.

Tuesday, December 9, 2008

Light of the World

Christmas is not Christmas without visits to the Halfaday's house. Every year, this family decks their house with lights and decorations galore. There is a 30-foot snowman, a life-size nativity scene, singing Christmas trees, a counter counting down the days until Christmas to start.

Last night, Rog and I walked Luke over to their house (they live in the development across the street from us) and as we turned the corner into their cul-de-sac, this is what we saw:

The picture does not nearly do justice to the experience. The house and yard, which are lit beginning the night of Thanksgiving, sit brightly in the background while in the middle of the cul-de-sac, the Halfaday clan, dressed as Santa, Mrs. Claus and two little elves, sit around a campfire, wishing passers-by Merry Christmas and handing out candy canes.

I couldn't help thinking as we walked home that this is a perfect example of living out Jesus' words: "You are the light of the world."

Our heart is to be so much like the heart of Jesus Christ that we can't help but shed light on the goodness, mercy and hope of God. The Halfadays take joy in bringing others joy and reflecting the heart of God. Being the light of the world doesn't have to mean we preach sermons on mountaintops or in large arenas. All of us are called to be lights right in our neighborhood. Thank you, Halfaday family, for the 1,000-watt reminder.

Here are a few more pictures of our night at the Halfaday "light"house:

Monday, December 1, 2008

Today is World AIDS Day

As of 12:00am, 4,105 children have been orphaned due to AIDS. By the end of this 24 hours, 6,000 children will be orphaned. 6,000. To be honest, Luke's heart condition and health is often on the forefront of my mind. It can be difficult to move my thoughts a continent away, to the suffering of so many children who are living alone with their brothers and sisters because their parents have died and their relatives have no resources to take in one more child. So I feel extra thankful today for World Vision for helping me step out of my own situation and remember those affected by AIDS.

You can visit to find out how you can help (there are a lot of ways!)

Thursday, November 27, 2008

One (of many) reasons

I don't know if blogspot has a character limit per post, but if I were to list everything I am thankful for today, I would probably meet that limit!

So, instead I wanted to write about one (of many) reasons I am thankful today. If you were to have told Roger and me on the day of Luke's diagnosis that we would, two years later, be able to say without hesitation that we would never trade our experience, we probably would have politely agreed while we rolled our internal eyes.

The beautiful thing about the way God works in our trials is in this verse: "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God." (1 Corinthians 1:3-4)

God's grace and comfort are so real to me through the connections we've made with other "heart" families. And this is God's intention! He never intends for us to walk through trials alone, and even when we feel like no one here on earth could possibly understand what we're feeling, He says, "I'm enough." And He is enough, but in His love for us, He also gives us people to walk alongside.

Last Sunday, Luke and I got the opportunity to meet Maddie and her mom, Katie as they were on this side of the state for Maddie's cardiology appointment. Katie and I met through our blogs, but what a treat to meet them in person! Maddie, hard to believe, is even cuter in person than in picture! Maddie is 8 months old and had her Glenn at Children's Hospital back in July. She is doing so well and is a human lightbulb! Katie and Maddie, it was so good to meet you!

Happy Thanksgiving everyone! Let's give thanks and please also keep those heart kids that are spending Thanksgiving in the hospital in your prayers!

Friday, November 21, 2008

A prayer challenge I'm taking

I found this awesome idea on another blog I follow and I am excited to see what God does in our family through this seven-day commitment!

If any of you also decide to try this 7x7 adventure, please comment and let me know how it went!

I long to be more of an unceasing pray-er, and the focus of 7x7 is to pray diligently and purposefully for our child(ren). "Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus." —1 Thessalonians 5:17

You can print these verses and timeline ideas out and keep them handy throughout your day. Or you can copy them onto 3x5 cards, whatever works best for you. Thanks, Angie, for the great idea!

1. When they wake up: "Let the morning bring (child's name) word of your unfailing love, for she has put her trust in You. Show (her/him) the way (she/he) should go, for to you (she/he) lifts up her soul."

—Adapted from Psalm 143:8

2. When they are getting dressed: "Therefore, as God's chosen child, holy and dearly loved, clothe yourself with compassion, kindness, humility, gentleness and patience. Lord, help (him/her) bear with others and forgive whatever grievances (he/she) has against others. Help (him/her) forgive as the Lord forgave (him/her). And over all these virtues, help (him/her) put on love, which binds them all together in perfect unity."

—Adapted from Colossians 3:12-14

3. While they are eating: "Teach (child's name) the secret of being content in any and every situation whether well-fed or hungry, whether living in plenty or in want. Teach (him/her) that (he/she) can do everything through him who gives (him/her) strength."

—Adapted from Philippians 4:12-13

4. When they go out of the house: "(Name of child), do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is-His good, pleasing and perfect will."

—Adapted from Romans 12:2

5. While they are taking a bath: "Lord, give (name of child) clean hands and a pure heart, and let (him/her) not lift (his/her) soul to an idol or swear by what is false. Let (him/her) receive blessing from the Lord and vindication from God (his/her) Savior. Let (him/her) be part of the generation of those who seek him, who seek your face, O God of Jacob."

—Adapted from Psalm 24:4-6

6. When they are going to bed: "The Lord Your God is with you; he is mighty to save. He will take great delight in you, he will quiet you with his love, be will rejoice over you with singing."

—Zephaniah 3:17

7. While they are sleeping: "I pray that (name of child) will do everything without complaining or arguing, so that (he/she) may become blameless and pure, a child of God without fault in a crooked and depraved generation, in which (he/she) shines like a star in the universe as (he/she) holds out the word of life-in order that (he/she) may boast on the day of Christ that (he/she) did not run or labor for nothing."

—Adapted from Philippians 2:14-16

Home sweet home for baby Alex

Alex came home on Sunday, 10 days post-op. What a star!

Unwarranted, worthless worry

There is nothing unnecessary in the Bible. What God has given man to write down is all relevant, useful and significant. I have been trying to get that knowledge out of my head and into my heart when my mind tends toward worry or fear. God says to us, "'Who of you by worrying can add a single hour to his life? Since you cannot do this very little thing, why do you worry about the rest?'" He tells us, "' not worry about your life, what you will eat; or about your body, what you will wear. Life is more than food, and the body more than clothes. Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds!'" (emphasis added).

About three weeks ago, Luke had the crud that's been circulating around, so I took him to the pediatrician's office to make sure his lungs were clear and his ears weren't infected. It was a simple upper respiratory infection, and he was healthy enough to get his flu shot. As is standard procedure, he was weighed at this appointment and the scale read 23 lbs, 3 ounces (that was with socks on). In early August, at his last dietician's appointment, he weighed 20 pounds even. I left the appointment very grateful that his lungs were clear and he was handling this cold very well, but I didn't like that he hadn't gained any weight in almost 3 months.

Our cardiologist was not concerned in the slightest and I took some comfort in that, but still, the worry persisted. I noticed I started thinking more about Luke's food intake, and wanting to push him to eat a bit more (all old habits that I've worked hard to let go of). My head knew that he was okay, that this is so typical of toddlers, but my heart automatically feared that his heart was working too hard.

Fast-forward to our three month follow-up appointment with Luke's dietician this week. I sat him on the scale, waiting to see that digital number pop up, and when it did, it read 24 lbs, 6 oz. 12th percentile, like he always is.

I think God tells us not to worry so often in His Word because that time could be spent so much more usefully. Thank goodness His mercies are new every morning and thank goodness He gives us plenty of situations to practice trusting Him more!

Teaching us to live worry-free, in the moment!

Oh, and thank goodness for weight gain! =) I have to admit, I did a little dance when I saw the scale's number.

We don't go back to see Judy for another SIX months. Our only change is that she wants us to stop using Pediasure altogether and offer him just whole milk. We'll see how that goes, since Luke's so used to the Pediasure taste!

Official stats, for the record:
Weight: 24 lbs, 6.3 ounces - 12th percentile
Height: 2' 7.97" (ok, can we call this 2'8"??) - 10th percentile
Head circumference: 47.8 cm - 30th percentile

Luke, you keep me on my toes, or more accurately, on my knees, so I thank you for that!

Wednesday, November 12, 2008

Get your Kleenex ready

I just had to share this awesome video created by a young adult survivor of CHD (specifically Tetralogy of Fallot). He is a musician from Australia, currently living in Nashville to pursue his career. In all the little children's faces I saw Luke, "then" and "now", and thanked God that so many heart babies now have a chance at a full and abundant life.

Click on the video screenshot to watch the video.

Monday, November 10, 2008

Baby Alex doing great!

I got a chance to see Alex in the PICU on Saturday and was able to visit with Dana (Alex's mom) again this morning. Alex is doing FANTASTIC! He is four days post-surgery and already has the ventilator, all three chest tubes, pacer wires, and arterial line removed. He is on a bit of oxygen through a nasal cannula and has a small amount of fluid on his lungs, but overall he is moving through his recovery like a champ. Keep it up, Alex!

Thursday, November 6, 2008

Ever feel like this? I do ...

UPDATE: Besides being more independent and opinionated during the day, Luke has also had trouble the last two weeks with bedtime and night wakings. Ever since we got the okay to let him sleep through the night without food at 14 months, he has been a dream sleeper. After stories and prayers, he rolls right over in his crib and falls fast asleep. The last couple weeks, however, he has cried when we put him down and keeps up the tears for about 45 minutes. Awful! Well, I am happy to report that tonight he went to bed tonight without a whimper. I think God knew we needed that little bit of encouragement! Tomorrow night might be a different story, but we're going to go kick up our feet, put some ice on our black eyes and enjoy the quiet for tonight!


ORIGINAL POST: We have had an interesting past three weeks with Luke. We have always described him as strong-willed and sure of what he wants, but those characteristics have always been fairly easy to rein in. In the past couple of weeks, Luke has gotten stronger, louder and more defiant. After that sentence, I want to make sure everyone knows the shiner is not a result of the above trends. =)

After scouring books, calling friends and watching discipline DVD's, Rog and I are reassured that Luke is not a little monster without the capability of empathy or obedience (my fear), but a — you guessed it — toddler. So, we enter toddlerhood armed with the time-out stair, the "ignore the behavior and walk away" tactic, and lots of prayer. Discipline is hard! Hardest is being a consistent disciplinarian. Especially when you aren't seeing a whole lot of progress. But I am reminded by many who have survived this phase that the hard work will bear fruit.

I have been a part of BSF (Bible Study Fellowship) the past several years and this year we are studying the life of Moses. Through Moses' life, I am seeing in a new way God's patience with his people, and his promise of ever-present help. You often hear of how Moses resists God's call for him to go to Pharoah to bring His people, the Israelites, out of their oppression in Egypt (Exodus 3 and 4). But I didn't realize that Moses resists God four times. And all four times, God patiently walks Moses through his hesitancy.

Moses' final argument, "O Lord, I have never been eloquent, neither in the past nor since you have spoken to your servant. I am slow of speech and tongue" echoes a bit of how I have been feeling in this new phase of parenthood. I do not always feel equipped to train Luke up to love the Lord and to honor his mom and dad, to serve others before himself and to long to do what is right. But how God answers Moses' concern is exactly how He answers my concerns: "The LORD said to him, 'Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the LORD? Now go; I will help you speak and will teach you what to say.'"

Raising Luke is not about how good or not good I am as a mom. Raising Luke is about relying on God's wisdom and His goodness in generously giving that wisdom to Rog and me when we ask.

So, with God as our help, we forge ahead into this strange land of toddlerhood, trusting that all three of us will come out on the other side with nothing more than a black eye. =)

Oh, you're wondering how Luke got his black eye? Wrestling with Papa and Nonna. How I love boys.

Two more smelly photos and one handsome boy

Important to get the skunk from all angles!

Lil' Stinker with Mama and Auntie Jenny

Sunday, November 2, 2008

Baby Alex

We were connected with an awesome family through our cardiologist's office and their baby boy, Alex, will be undergoing the Glenn and DKS (his first open-heart surgery and the same two procedures Luke had done last August) this Thursday at Mary Bridge Children's Hospital. Please pray for this family and that Alex would recover beautifully and quickly from this surgery.

Go, Alex, go!

Saturday, November 1, 2008

What's that SMELL?!

When I ordered Luke's Halloween costume, Roger was not loving the idea. "Really hon? I don't think I want my son to be a skunk for Halloween. Skunk's stink!" And then the Old Navy package arrived. "Let's just try the costume on Luke and if we really don't like it, I'll send it back." Once the hood was up and the belly was velcroed in place, there was no question we were keeping the little stinker outfit! See for yourself the cutest little skunk in town:

Lukey Le Pew

Me? A little stinker?

Mmmm...Hot dogs


Mmmmm...Candy. We've been assured by Dr. Stefanelli that Luke's coronary arteries are not impacted by his congenital heart defect. Good thing! =)

The night before Halloween, I took Luke to the YMCA's Harvest Festival, where the highlight for him was not the bouncy blow-up bus (although fun) or the hot dog and cupcake (which was yummy) but the little boy in an Elmo costume he followed around the field. Every day since, Luke tells me, "Saw Elmo! Big Elmo!"

On Halloween night, our plan was to Trick-or-Treat around downtown Puyallup. It was a bit more crowded than Rog and I anticipated and then there was the man in the hairy gorilla costume who thought it would be funny to roar right in Luke's face. I have never seen such a horrified reaction on a toddler's face. He turned away so fast he fell flat on his face. I know the man felt terrible, but it was pretty awful and the mama bear in me wanted to give him a piece of my mind. Instead, I picked up Luke and tried to distract him with a bag of M&M's. After that, he was not very excited about trick-or-treating, so we headed back to our safe, gorilla-less neighborhood and prayed that Luke wouldn't be up all night with nightmares!

We are thankful the next two holidays are also gorilla-less and instead of trying to avoid scary ghosts and goblins, we will get to point out the symbols of thankfulness and our Lord's birth!

Tuesday, October 14, 2008

Spooner's Farm

Fall is here!... What else to do besides head to the Pumpkin Patch?

Luke is so fun these days. These are sweet days being home as a family and doing "normal" family things (I know, whatever that is!). I know that if we become a family a four it will be just as sweet, but there is something special about being a trio right now.

Duckie races!

Mama and Luke sittin' on a cow ...

Either wondering which pumpkin is juuust right,
or wondering how to get that big ol' pumpkin off his foot.

Here I am, guys! Over here, in the pumpkin!

Oh my sweet little man

Sunday, October 5, 2008

"Heart"warming turn-out for Heart Walk

Luke is one loved little boy:

From left to right: Nonna Yvonne, Papa Pat, Joan, Laura, David, Val, Marcus (in stroller), Steve, Rog, Erica, me, Luke (in stroller), Anna, Auntie Andee, Carla, Nana Cindy, Papa Bill

We had shirts made that said, "Team Luke" on the back and number bibs that had Luke's picture on them. Such a great day and thankfully the rain held off until we were walking back to our cars!

Total raised through the American Heart Association for CHD awareness/research: $1,540!!!

Rog and I were blessed to see such generosity and support first-hand. Thank you everyone for making this year's Start! Heart Walk a success!

Thursday, October 2, 2008

Lab results

I just got a call from Dr. Stefanelli's office and Luke's metabolic lab results were all within the normal range! Yea! I'm not sure what it would mean if they weren't, but no need to let my mind even go there.

Luke goes to school!

It seems that one of the recurring themes of Luke's life is how he continually exceeds my expectations with how well he adapts to new situations. Last Friday was no exception as we headed to Luke's first day of nursery school. The set-up of the program sounded like a great fit for us, as the parents attend and interact with the kids during the two-hour class. The first 30 minutes is set aside for parent and child play time, and as you can see from the posted pictures below, Luke loved checking out all the cool toys (especially the noisy ones). From 10am-10:55am, the parents move to an adjoining room to meet and discuss child development issues and the kiddo's "stay" in the play area with the co-op's children's teacher and parent helper. What I love about this program is that although the kids are encouraged to stay in the play area, they can come in and out of where the moms are meeting. Luke definitely "checked-in" with me every couple of minutes, mostly coming in to flop down on a big pillow and laugh at how funny he was, but then he would head back out to where the other kids were.

I know this sounds like pretty typical 20-month old behavior, but for a kid that has little to no exposure to nursery settings, I was blown away by how comfortable and confident he seemed. (I won't mention how quickly we got paged by our church nursery the very next night when Luke cried and cried when we left him there to go to the service. Nope, only proud-mama stories today =)

After the moms meet, we clean up, wash our hands and get to have snacks. By that time, Luke was hollering for "naaaaacks". Music time is the last part of the day and that was the only part Luke wasn't ga-ga over. He was looking around the circle like the other moms and kids had grown three heads. Maybe he just didn't like the song selection on this particular day.

We had such a great day and are excited to go back this Friday and play with our new friends!

I am so proud of your adaptibility, Luke, and so thankful you are my son.

These music toys were the first things Luke played with.
Gender differences exemplified: Luke went straight for the noise-makers!

Luke "playing" with the other kiddos.

His little red felt name-tag. Could this be any cuter?

Saturday, September 27, 2008

Remembering Susanne

Today is the two year anniversary of my dear friend Susanne's passing.

Susanne and I met as sophomore's in high school and our friendship continued through graduation, college, engagements, marriages, new jobs and new homes. She passed away when I was six months pregnant with Luke and my sadness today is not about where she is, but that we are without her. I know that she would have been an amazing "auntie" to Luke, as she prayed diligently for him and his heart after we got the news about his defect. Susanne was one of the most generous and thoughtful people I know and my heart clings today to the promise that we will see each other again in Heaven.

You are missed, loved and remembered, Susanne.


I wanted to post part of her obituary, that was beautifully written by her dad, Mike:


This is a story of faith — about a family who loves and serves God, and a story of Susanne Neil Scaringi: beloved Wife, Daughter, Sister, Niece, Cousin, Auntie and friend.

Many, many people called Susanne friend, but I prefer to just call her Nan. I am her father, the one who scolded her when she was bad, encouraged her, shaped her and molded her along with her mother with God's help into the bright and beautiful woman she had become until the Lord took her home on Wednesday morning last. I don't happen to believe in accidents because God is sovereign and if we don't serve a perfect God who knows the best way to bring about His perfect will, then this place on earth is more terrifying than any of us realized. But thank God that is not the case. God uses our suffering for good for those who know Him, and that my dear fiends gives me eternal peace.

Where do you start to explain to people about the love of a father and a daughter? At her wedding I described her as my Ferrari who I was always reluctant to have some kid ask to take for a spin. When she was one year old in 1980 she came down with meningitis and we thought we would lose her. That next year we did lose our third child, Ryan Neil, born Jan. 1, 1981 who lived six weeks. Having lost a little one and a big one, neither is easy: they are just different. You have the same hopes for them, but the memories of their life has a much different impact. We loved our daughter as we love our remaining son James and his wife Heather who will become much more than a daughter in-law to us now. When we got out of bed on Wednesday morning I had a son in-law, but on that day Tony became my son. I will be eternally grateful that God brought him to our family the way He did.

Susanne was an outdoor woman; I suppose she gets it from our family legacy passed on by her great-grandfathers. Susanne loved the mountains: she loved to trek, ski, run, swim, mountain climb, and cycle. She was an avid cyclist and bike-commuted to work most days. She climbed Mt. Rainier twice, summiting once, and she climbed Mt. Baker. She was a three year varsity runner at Rogers HS in Puyallup, a Heptathlete at CWU, did a triathlon with Team in Training in Maui 2003, and the Danskin in 2006, and ran numerous charity runs and half marathons. But her heart was in Christ and a ministry called YoungLife. She was a YoungLife leader in college and worked a summer at Beyond Malibu in 1998 where kids climb the 7,000 foot mountains from sea level for a mountain top experience.

Tony Scaringi came into her store to buy a jacket in the fall of 2001 and he had a Beyond Malibu hat on. She asked him if he had been there and his response was that he had been a guide for the last two years. They were married the following year.

Susanne had an incredible spirit and those who knew her will agree that they couldn't get enough of her infectious laugh, her caring manner, and bright eyes. I think everyone will remember her hair. She was the kind of girl who would do anything for a friend and making friends was her gift from God. She went to work for Outdoor Research in Seattle two years ago as a Customer Service Representative serving their international accounts. We know the kind of girl she was demonstrated by the 100 people in the waiting room at Harborview Hospital last Wednesday. We will miss her dearly but we have an assurance that we will be with her again in Paradise with Christ, and that, my friends, is our ultimate Joy.

Monday, September 22, 2008


Luke continues to "cruise" along this CHD road and Dr. Stefanelli couldn't be happier. And when Dr. S. is happy, Luke's mom and dad are happy! It must be so gratifying to see a child go from complete congestive heart failure in infancy to a thriving, happy, energetic little boy. We talked about the time Luke spent at Mary Bridge Children's Hospital before his first surgery, where he was continually fed high calorie formula through his NG tube for eight straight days and did not gain one ounce. Dr. Stefanelli guesses his heart was having to work five to six times as hard as it should have been. What God is teaching me through this journey is that He never changes. He was there when Luke was really sick and He is here in his health. And He will be there when we face the Fontan. What God wants from me is to find my joy and peace in THAT promise; circumstances are irrelevant. Oh, how easy to type, how hard to live out. "Jesus looked at them and said, 'With man this is impossible, but not with God; all things are possible with God.'" —Mark 10:27

Prayers for a good report were definitely answered yesterday. Luke's saturation levels were at 89% (this even with a little cold); blood pressure was good, EKG looked good; weight was up. I think I needed to hear yesterday that Luke's heart is strong. A few other comments from Dr. S. I was happy to hear:

"He looks fantastic. He really looks so good."

"He is going to cruise until his next surgery."

"Wow, he even has a little chub on him!"

(You can picture me basking in these words.)

Rog and I have noticed we hear him breathing a little louder (not necessarily heavier) when he's really active (which is most of the time), but Dr. S. thinks this probably has a little to do with his cold, but mostly this is probably Luke's norm. He couldn't hear any congestion in his lungs, and the more audible breathing definitely hasn't slowed him down at all.

For the past months, Rog and I have had in our minds that most likely Luke's next surgery (the Fontan) will be in the summer of 2010, but I still thought if there was a possibility of getting him to 30 pounds by next summer, they would operate then. It was good to hear Dr. Stefanelli say that there is no benefit to pushing his weight to get the Fontan done a year earlier and no harm in waiting the extra year. It's nice to have a more definitive timeline for Luke's surgery and I must admit, nice to let go of the goal of pushing Luke to hit 30 pounds by next August.

His weight is up to 23.5 pounds, so Dr. S. upped his Enalapril to 1.5 mL's twice a day instead of 1 mL twice a day. His Lasix, Spironolactone, Diuril and aspirin will stay at the same dose. Luke will need a flu shot, but because he will turn two right at the beginning of Syangis season, he won't be getting the RSV shots this year. Good news for Luke, not to get poked every month, but Mom and Dad liked those shots for the immunity boost it gave him. Dr. S. says he'll be okay if he gets RSV this year. Probably won't be fun, but he'll be okay.

I can't forget to mention that Luke was such a good boy at this appointment! The key was the fruit roll-up I brought. During the EKG, we were able to hold his hands down (so he didn't pull off the stickers as fast as Nurse Jodi put them on) while I fed him his treat like a baby bird. Jodi was fanastic with him, and so patient as we tried to get his sat measurement. I will tell you he is one fast little boy at grabbing that wire clipped to his ear!

Since Luke hasn't had any labs drawn since his Glenn last summer, Dr. Stefanelli wanted us to go ahead and do a blood draw to make sure all his levels look okay since he is on diuretics. Again, Luke was an absolute trooper, and with all the terrible blood draw experiences we've had with him, this one was a piece of cake! The nurse at the Mary Bridge Health Center got the blood on the first try and Luke cried less and recovered faster than he did at his RSV and vaccination shots! Dr. S. will call us with the results this week or next.

Thank you, Lord, for a wonderful appointment, for an incredible staff at NW Children's Heart Center, and for never changing.

Sunday, September 21, 2008

Prayer request for cardiology appointment

We see Dr. Stefanelli tomorrow after four long months, and Rog and I are anxious to hear how Dr. S. thinks he's doing. We ask for prayers for a good report and no concerns on Dr. S's part!

Saturday, September 20, 2008

You can do it at a trot ...

Do Did the Puyallup (6 times)

Yes, it's true, Luke takes after his Daddy ... he LOVES the Puyallup Fair, or the "paaaark" as he calls it. If I had to rank his favorite parts of the fair, the list would look like this:
  1. ChooChoo train ride
  2. The cows
  3. Scones (which, in case you're wondering, is #1 on mama's list)
  4. His Veggie Tales "Silly Songs" CD we bought him
  5. Other food items (corn on the cob, chicken strips, elephants ears, etc.)
If you were a casual bystander, you may not guess that Luke loved the rides in Sillyville — we as his parents weren't even sure the first time around — until you saw his tears when the ride was over. He is such a crack-up! You can tell in the pictures below how serious he is within a new experience, taking it all in before deciding if he's having fun or not. Enjoy!

The nice ticket-taker let mom go on the helicopters with Luke.


Rog said when looking at this picture:
"Nice, Jes, the yellow "Dip" sign
is right above my head."

We promise he is having fun!

Monday, September 1, 2008

Hair's to a big boy!

We took Luke to get his first hair cut today thinking, "What are we thinking? Sharp scissors near a squirmy boy's HEAD?!" Luke, on the other hand, was thinking, "Sure I'll still for you when you give me a pink lemonade sucker." Smart boy! He really did so well, only crying when the lady accidently poked him with the scissors that she deemed "as sharp as a razor". Good thing we've been through two open-heart surgeries or we might have been a bit upset! No, Lisa did a great job and Luke was actually kind of fascinated by the whole process and thought sitting in a police car was pretty great. Not to mention the sucker he got =).

We wanted to post a couple of pictures of our handsome boy (who really no longer looks like a baby):

Saturday, August 30, 2008

Tiger says "Roar!"

Rog and I took Luke to the zoo yesterday, his first time! For most of the afternoon, the big hit was the Puffins (Luke called them "quack quacks"), not even showing as much interest in the walruses or monkeys! The puffins were quickly forgotten, however, when we came to the tigers ("Cat ... roar!" Luke would say). Any animal we saw after the tigers I fear was a disappointment to Luke. And as first-time parents are wont to do, we stopped in the gift shop on the way out to purchase a tiger for Luke to take home:

Here are a couple more pictures from our big adventure: