Lanie Thompson Swoops In

We’ve been extremely blessed to have good friends come and help us during this time. Christy Watson, our very close friends from Tupelo, was with us for a week ( thank you BuzzCorps), and Lanie Thompson just arrived to be with us through Wednesday. I can’t tell you how much it helps having a third person here.

Children’s Hospital will never be the same after Lanie leaves!

Maggie Is Making Great Improvements

Maggie is continuing to have several seizures a day, but we got her out of bed this morning and she just about walked herself to the chair and to the bathroom. Her temp is down and infections appear to be clearing. Her pneumonia is improving as well.  Right now, she is reading comments and email left by all of you.

We are facing some very difficult decisions in the coming days and weeks. The vagal nerve stimulator will likely be a band-aid solution at best to buy us some time to get second opinions and more. Some of this will get cleared up after Maggie has the second SPECT scan on Tuesday.

Thank you for praying for us. As you can see in the picture above, your prayers are effective.

Send A Video Greeting To Maggie

Maggie is missing her friends from home, youth group, and church terribly. It has been a very long month in the hospital, and being this far away from friends has made it that much harder. It looks we will be here at least another week.

I’d like to bring Maggie’s friends, and others that love her, in to her hospital room via video so she can see you and hear you. I can’t tell you how much this will mean to Maggie.

If you have access to a webcam, here is how you can easily send Maggie a video greeting.

1. Record your video using your computer and webcam

2. Upload it to YouTube.com, Blip.tv, or your favorite video hosting website

3. Paste the url to the video as a comment to this post. The url is usually easily accessible through the website you are using to upload it.

Thank you!

When Friends Love On Your Children

I remember the day Maggie was diagnosed with a brain tumor, ironically five years ago last week. I sat all four of my kids down and told them that Maggie was very sick, and that we had to take her to Denver ASAP. Dax, eight years-old at the time, asked me if Maggie was going to be ok and I told him I didn’t know. The quiver in his lips spoke volumes. Kathi and I held each of the kids and cried together, not knowing if we were ever going to be able to do that again – all six of us clinging together, each of us fearful in our own way.

The past five years have brought multiple brain surgeries, hospital stays that often come up at the last minute and last for weeks on end, chemo, long out-of-town trips, countless doctor visits, and disappointment living side by side with hope. Among the many threads holding our family together over the years, the strongest has been that of our friends. Friends who have taken in our kids for weeks at a time and loving them as if they were their own. Friends who pray and cry with your kids during a time you can’t. Friends who fervently pray for you, knowing you can’t even pray yourself. Friends who have helped you financially. Friends who interrupt their own lives in order to serve you. Friends who are faithful to just hug you, not needing to hear you tell the story for the umpteenth time. These are friends you know who are there without even needing to call them. This is the Body of Christ.

As I write this and watch Maggie sleep through the night for the first time in three weeks, our other three children are being loved on and cared for as a mommy and daddy could only dream of.  We long to kiss Zoe’s sweet cheeks, feel the strength of Dax’s arms around our shoulders, and run our fingers through Anna Kathryn’s beautiful hair, but we know it won’t be too much longer. Until then, we know the Body of Christ is doing it for us.

Resting In The Garden With Maggie

Excuse the shakiness (small handheld cameras are hard to hold still), but this a good feel for the rooftop garden at St. Louis Children’s Hospital. This is where we go to pray, get perspective, and rejuvenate. Every hospital should have one of these. They are good for the soul.

By the way, I couldn’t get close-up video of Maggie because she specifically asked me not to. That is why you only see her from a distance in this video. She had about four difficult seizures today, but she appears to be getting well. She is much more responsive than she has been in days past, and able to talk with us now.

Dax Appointed to State Youth Advisory Council

I am sooooo proud of my son, Dax. He was just appointed to represent Senate District 9 for the Colorado state legislature’s Youth Advisory Council. When I spoke with Dax over the phone today, I could see his huge smile through phone. He was BEAMING!!! This is such good news for Dax and I so proud of him. I know he will serve the state of Colorado with true humility that has already defined his character.

Here is the press release

SEN. SCHULTHEIS APPOINTS DAX BUSHWAY TO YOUTH ADVISORY COUNCIL

Lawmaker selects young conservative to represent Senate District 9

DENVER — Sen. Dave Schultheis, R-Colorado Springs named Dax Bushway to the Youth Advisory Council.

“Dax Bushway is an extraordinary young man,” said Schultheis. “Dax knows who he is, and has strong conservative views that reflect the views of a majority of citizens in SD-9.”

Created early this year by SB-1157, the Youth Advisory Council was established to provide members of the General Assembly a perspective on pending and proposed legislation by today’s youth. Additionally, the Council gathers information and potential solutions for youth-related issues.

“Dax is the oldest of four in his family, he’s one year away from being an Eagle Scout, is home-schooled, and is involved with the National Christian Forensics & Communications Association Debate League,” Schultheis said. “At the relatively young age of 14, Dax has shown maturity beyond his years and I have no doubt he is the right pick to represent my district in the Youth Advisory Council.”

Sen. Dave Schultheis represents Senate District 9, which comprises the north central area of El Paso County. Schultheis serves on the State, Veterans, & Military Affairs and Health & Human Services Committees.

Life On The Roller Coaster

Shortly after my last post, Maggie began having some of the most violent seizures we’ve seen to date, and they have continued on for the rest of the day.

Maggie’s SPECT scan is scheduled for Tuesday with all hope that seizures will hold off during Tuesday to get this crucial test done.

As each hour goes by, we have to hold on to the facts we know of God, and not of the emotions we feel. Those facts are: God loves Maggie so much more than we do, and a picture is being painted here that is far more beautiful than I could ever imagine. He is Sovereign, in control, and the picture is being painted just as He designed it to be. I just wish sometimes He would pick a different subject.

The Next Several Days – Get Well

The plan for the next several days is to get Maggie well and recovering, with the goal of doing the inter ictal spect scan on Tuesday (Monday is a holiday). It is very important that Maggie’s seizures remain under control and for Maggie to get well for that to happen, though. Right now, everything is very complicated with how sick Maggie has become while in the hospital. Maggie is getting respiratory therapy, speech therapy, occupational therapy, and physical therapy, as well as a host of medicines.  No word yet on the cultures for the infection.

We are seriously considering the next move to be the Vagal Nerve Stimulator. Assuming she is well, she could have surgery next week to have that implanted.

We are reading Maggie a lot of the cards that have been sent and created by her Sunday School class and it is having a very good impact. We are also reading many of the comments left on the website. We saw her laugh uncontrollably for the first time in two weeks as we were reading some cards to her. I can’t tell you much that did for us to finally see a smile and here a laugh.

Maggie has been very weak and unresponsive to a lot of interaction, so this is very good therapy.

I extended our hotel reservation through next Saturday, as I don’t think we’ll be home before then.

By the way, I did an interview with Christian Computing Magazine last month, and it got published a couple of days ago. You can read it here – scroll down to the Tablets and Faith article.

Missing Home

How You Know You’ve Been At The Hospital Too Long

1. Your pants are getting tighter
2. A friend offers to cut your hair for you
3. You get on a first-named basis with the cleaning crew. This is Shirley.
4. The hospital receptionist greets you by your first name
5. A random person in the elevator asks you "Didn’t I see you in the ICU two weeks ago?" and all you can do is nod in agreement
6. You learn the congregating patterns of the folks in the cafeteria and time your lunches and dinners around them
7. You learn where the best WiFi hotspots are at various locations in the hospital
8. The highlight of a conversation with your wife is about which hospitals and floors have the most comfortable sleeping benches / chairs for parents.
9. You learn how to change bed sheets five times a day without lifting up the patient
10. You notice the construction crew making progress on a building that you frequently pass on the way to the hospital room
11. The sound of your kid’s voices brings you to tears