Wednesday, May 28, 2008

4 and 91

When you're a heart mama, those are jump-for-joy numbers.

4 (the number of months until Dr. Stefanelli wants to see us again) + 91 (Luke's oxygen saturation percentage) = A very happy mommy and daddy!

Thank you for your prayers for yesterday's appointment. We are giving God glory for such a great report! After the echo was finished, Dr. Stefanelli came to tell me that he didn't have one concern about Luke's heart after seeing the pictures. Ventricular function was great, no blood flow blockage, etc. He also said that he thinks Luke will just cruise until his next surgery (late summer of 2009 or summer of 2010, depending on his weight and oxygen saturation level).

Dr. Stefanelli didn't need an EKG run, or a chest x-ray on our little man, so after his sat check, blood pressure and weight and height, we headed into the echo room. Kris, our echo tech, is so fantastic. And Luke did much better than I expected. He laid with me on the table and watched the Lion King for about 7 minutes before trying to push the ultrasound wand away. Our nurse Jen got another 6-8 minutes out of him by blowing bubbles. Way to go, team! I know I say it a lot, but I LOVE this office staff. I'm so thankful for them!

So we don't head back until the end of September. We couldn't even schedule an appointment that far out. Unbelievable.

"Let me shout God's name with a praising song,
Let me tell his greatness in a prayer of thanks."
—Psalm 69:30, The Message

Friday, May 23, 2008

You're asking Luke to lie still?

Adding another quick prayer request to yesterday's post. Our cardiologist's office doesn't perform sedated echo's unless they absolutely have to, so we need prayer for God to supernaturally keep Luke lying on his back for 30-40 minutes during the echo. Considering I have trouble keeping him on his back for 30-40 seconds to change his diaper, you can imagine I'm a little unsure how this is going to work. I'll be bringing movies, bubbles and snacks, and the front office ladies help out as well with entertainment, so hopefully we'll get good pictures!

Thursday, May 22, 2008

Dietician appointment and more

Luke had his follow-up appointment with Judy, his dietician, this afternoon, and he is right on track! She thought he looked fantastic and his weight was 21 pounds, 8 ounces, right at the 10th percentile. His height was up to the 15th percentile (yea!) at a little over 30" and his weight-to-length ratio was just under 50%, so our little guy is not underweight or overweight! I think that even with a perfectly functioning heart, this is the weight/height Luke would be, and that's comforting to me. These past six weeks have been the most relaxed I've been with Luke's eating and weight. I am continually learning that I can provide him with a variety of foods and a healthy eating environment, but from there, it's Luke's responsibility and I need to trust him. I know I don't have anything to compare him to, but I think he's a good eater. He tries a lot of different kinds of food and he seems to enjoy food. My prayer has always been that my anxiety over his weight would never affect the way he thinks about food.

So, a good appointment! She wants to see us in two months and at that point, we'll see how Luke does without his reinforcements (Pediasure and Just for Kids). The hope is that without these caloric dense drinks, he will compensate by eating more solid foods.

A couple of unrelated things ... one, a picture I just have to post because he's just so darn cute:

Two, here is what happens when Mom tries to get a quick load of laundry folded. How many times have I heard other moms say that it's never a good sign when the house is too quiet ... I should know better!

Three, I am flying to Minnesota on Saturday for my dear friend Megann's wedding and would love prayer for a safe trip and for peace during the 48 hours I'm away from my baby! He'll be at home with Dad, so I know he'll be in good hands and will do just fine ... it's me I'm worried about!

Four, I'll ask for prayer for Luke's cardiology appointment on Tuesday the 27th. Luke hasn't had an echo since last September, so we are praying that his heart function looks great and specifically that the Glenn is working as it should be. After the operation, Luke's surgeon told us he did see the hole he had made in the first surgery between his two atria had "scarred down", something that is pretty rare. If for some reason, that happened again, they would need to surgically stint that hole. Please pray that that atrial hole is wide open!

Have a safe and happy long Memorial Day weekend!

Thursday, May 8, 2008


I shared about our Sparrow school in yesterday's post, and once again they blessed us with their hospitality and love for us! We arrived right behind the Mariner Moose van and the welcoming committee was at the door waiting for us with balloons and banners. We headed down to the soccer field where the kids were going to walk their laps. Everyone was so excited to see Mr. Luke and how big he's getting. He was surrounded by kids almost the whole time and he did fantastic! The only tears came when the Moose walked up to him the first time. Oops, we forgot to tell him to approach slowly =) Don't worry, though, by the end of our time there, all Luke wanted to do was be near the Moose.

The pictures we took tell the story of our wonderful afternoon at St. Monica's:

Not yet sure if this tall, furry thing is safe.

Daddy, mommy, Luke and the Moose.
We even got his autograph!

Okay, maybe he isn't so mean and scary.
Maybe I even think he's funny!

The older kids took such good care of Luke.

Luke "walking" with the big kids.

The beautiful banners the kids made for
our visit. How cute are these girls?

And the rain held off and the sun was out ... thank you Lord for a great day!

Wednesday, May 7, 2008

Sparrow Clubs

Sick kids get help. Healthy kids become heroes. Schools become sanctuaries.

This is the mission of Sparrow Clubs, an organization we were introduced to last August through my boss, Skip. Driving to work, he heard an ad on the radio encouraging listeners to connect children in medical crisis with local schools willing to "adopt" a Sparrow for the school year. Our family came to his mind and he called the organization and filled out an application on our behalf. I know, above and beyond the duties of a boss.

We were contacted near the end of August by Jeff Leeland, the founder of Sparrow Clubs, excited to connect us with St. Monica's School in Mercer Island. Luke was "adopted" by St. Monica's at an all-school assembly on September 19. The Sparrow school commits to community service and fundraising projects for their "adoptee" throughout the year. The best part of this experience has been seeing how commited St. Monica's has been to our family. They pray for us daily, welcome us to all their special school events, and love to receive updates on how we are doing.

Tomorrow, the kids (it's a K-8 school) are holding a Walk-a-thon at the school for Luke. We are heading up there in the early afternoon to walk with the kids and the Mariner Moose! I think I'll be more excited about that part than Luke =) We love this school and feel so thankful for their consistent and whole-hearted support of us. I'll post some pictures tomorrow of our big walk!

If you are interested in more information on this fantastic organization, the Web site is

Sunday, May 4, 2008

Splish splash

Just wanted to share some cute pictures of Luke in his bath this weekend. In the second picture, you can really see how faint his "zipper" is becoming.

From our perspective, he is doing so well and are praying for Dr. Stefanelli to confirm that on May 27th. I believe he will have an echocardiogram done at this appointment, along with all the usuals (chest x-ray, ecg, sat check, blood pressure, height and weight). Luke has such a unique heart anatomy that Dr. S. rescheduled us to come in while a visiting physician is in the office. We're okay with letting other doctors in on what we already know: Luke's heart is