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):