Zoe and I went to Glen Eyrie for tea this afternoon. We had a great time.
You can view our pictures (I had a beautiful subject to photograph) here on Facebook.
This Past Week…
I’ve been in Mississippi all of this week to attend the funeral of my Aunt Wendy. She was an amazing person and I will miss her tremendously. She is leaving a wonderful legacy in her three sons – David, Chad, and Chris.
It has been really good catching up with family and spending time with my mom and sisters (LaBelle and Tiffany). Unfortunately, I didn’t get an opportunity to spend much time in Meridian and see my other sister, Rachel, and other friends we have there. We are hoping to come back to Mississippi on a family trip, though. My Uncle Brents and Aunt Estelle have been absolutely amazing. I have not lacked for anything during my stay at their home. I managed to pack on a few pounds due to her wonderful cooking. They are some of the most gracious and approachable people you will ever meet. They’ve been known to leave some tasty Snickers on your pillow for a “night time snack” – they are quite cool.
I was also blessed to spend an evening with Steven Holman and his family in Ackerman. They are a wonderful family who have been faithful in praying for us over the years and it was joy being in their home. You can take a look at some pictures I took during my trip over on Flickr.
Pray for Maggie. This past week has been a difficult one for her. I didn’t realize how tough her week has been going until talking with Kathi this afternoon. The effects of being off of Tripleptal are finally being felt. After a visit with the doctor this morning and seeing her condition, they put her back on the medicine. She has not been having any seizure activity, but the medicine was helping alleviate alot of nerve problems she’s been having as a result of her surgeries, and it is now evident to us and her doctors how much it was helping. Pray that we will begin to see either some good positive or negative results from the neurofeedback therapy.
Pray for Dax. He is working on his Eagle Scout project this summer (building care bags for children in the hospital) and plans to have his Eagle Badge by the end of the summer. He’s got a lot of work to do, but is very excited about earning such a rare achievement.
Pray for Zoe. She just turned 8 years old on June 8. She is a delight, loves to laugh, draw, and play outside 25 hours a day. There is nothing like sitting on park bench together and sharing a pack of M&M’s.
Pray for Anna Kathryn. Anna Kathryn is our independent wild girl and she absolutely loves life to the fullest. It is impossible to miss it in the smile on her face.
Pray for Kathi. Pray that she would be able to enjoy the summer and relax. Pray that God would continue to give her joy in abundance.
Pray for me. Pray that I would strive to seek Christ in all I do – loving, shepherding, and leading my family; making wise decisions; writing; working; and living joyfully amidst an uncertain road.
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.
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
