A Lot of Wisdom in this Little Gem…

Picked this up from a friend’s twitter:

“Some people never go crazy. What truly horrible lives they must lead.” –Charles Bukosky

Quick Status Update

Maggie is still doing well since coming home from the hospital several weeks back. Per recommendation from her doctors in Denver and St. Louis, we began taking Maggie to a neurofeedback specialist in Boulder. So far, she has responded positively to the therapy. The doctor kicks it up a knotch beginning this Wednesday. If the therapy begins to make a positive impact on Maggie over the next several months, we will look at purchasing  a system at home. She is still off most of her medications, except for the vagus nerve stimulator and a minor medication at night.

Two Peas In a Pod

Peaks and Valleys

I love driving around Colorado Springs. The slightest change in elevation or angle provides a whole new perspective on the mountains. For example, driving up and down Woodmen Rd will give a gorgeous view of Pikes Peak at one moment, only to then be dwarfed by the foothills in front of it the next. Head over to Woodland Park, and you’ll see Pikes Peak at angles you’ve never seen before.

Our relationship with God offers a similar experience. Moments of joy, pain, and relative smooth riding all allow us to relate to and see God with a whole new perspective. In pain, He is our loving father, collecting our tears as they flow, putting them in a bottle (Psalm 56:8). He delights in our prayer when we are beyond empty. He takes pleasure in providing manna in our time of need. In times of joy, He breaks out the most expensive wine and celebrates with us, collecting those same tears and putting them in a bottle. During moments of relative smooth riding, He provides that reminder that He is our rest and has never relinquished His sovereignty.

We do serve a God who is Good all the time. That Goodness just looks a little different from where you are standing at that particular moment.

Maggie’s Home, The Longterm

We never know what to expect going in to a hospital stay and this latest one was no different. They come without any notice and are quite wearing for us all

On Wednesday night, Maggie’s doctors decided to begin weaning her from her anti-seizure medications in hopes of triggering a seizure. They wanted to see what Maggie had experienced on Saturday, and capture it on film and in their EEG computers. Kathi and I were waiting for all you-know-what to break loose, but it never came. In fact, Maggie began to greatly improve – thinking more clearly, less confused, and more like the Maggie we have only seen glimpses of the past couple of years.She is now completely weaned from her main medication. She is currently only on 1 medication and it is a small dose at that. We don’t know how long this will last, but we are rejoicing with Maggie and enjoying this manna from heaven. We hope to learn a lot through this experiment, however short or long – through the good and the potential bad.

We had a really good heart to heart / lay it all on the line conversation with Maggie’s main doctor today. A lot was said, but the long and short of it is that barring any medical breakthroughs, surgical intervention, or Jesus coming back to save us from the curses of this world, the long term reality for Maggie is that this will be a lifetime struggle. This struggle will be a roller coaster ride of wonderful peaks and very painful valleys. There will be many experiments with medications, lots of tests, last minute and lengthy hospital stays, and lots of various therapies helping Maggie to cope with this life that God has ordained for her. The issues that Maggie has to deal with now, and in to the future, are a consequence of decisions that we and her doctors had to make years ago to save her life.

We are all home now, camped out together in the living room watching Shek, and enjoying Vanessa Golden’s homemade banana pudding…enjoying what God has given us this day.

Thank you for continuing to walk alongside us through all the peaks and valleys. It will be a long trek, and we are blessed that you would choose to walk it along side Maggie and the rest of our family.

Rob, Kathi, Dax, Maggie, Anna Kathryn, and Zoe

Coming Home Today!

Good news! Maggie is coming home today – on a whole lot less medications. She’s been doing so well without the meds (less foggy / confused, etc), we are going to see how she does over the next week to two.

Update: Children’s Hospital of Denver is on Lock Down due to Swine Flu

Children’s Hospital in
Denver is on lock down due to the swine flu – no visitors allowed. Only
parents. Lanie Thompson missed getting in by 10 minutes…

Update: ban lifted during the night.