Doing Well Today
Maggie is dealing with the med weaning quite well. In fact, I think she is feeling better. Not exactly what the doctors are looking for, but we’ll take what we can get 
Archive for April, 2009
Weaning off of Meds
The doctors begin weaning Maggie off of her meds tonight to see if they can get some better information on the EEG….could be a rough couple of days.
Getting Beat In Scrabble
Just taking a break from playing scrabble with Maggie. She had me beat until we subtracted out our remaining letters, but I only won by 1 point. Been an up and down day, doctors have not stopped by yet.
Checked In, Hooked Up, and Waiting
We got checked in this morning and the nurses promptly got Maggie all hooked up to the EEG. She’s already had a few episodes this morning that we are hoping were picked up by the EEG, which is never a guarantee given how deep the location these things are coming from.
Meanwhile, we just hurry up and wait and wait and wait.
Maggie Is Getting Admitted to Denver Children’s Hospital On Tuesday Morning
Maggie has had a rough couple of days and the doctors at Denver Children’s Hospital want to admit her tomorrow morning for at least a couple of days for stabilizing, monitoring, and testing. Maggie is not at a crisis point, and she is doing ok at the moment, but that could likely change five minutes from now, though. I will post some status updates on Facebook and here as we learn things.
Please pray that the doctors will learn something that will help Maggie so that things will not continue to slowly get worse.
The Latest Status With Maggie, etc
Over the past several weeks, folks have been asking me about Maggie and how things are going. The statement that pretty much summarizes everything is: things remain predictably unpredictable. Maggie has had an awesome week so far, but the last 3 – 6 weeks have been up and down with 2 – 3 seizures a week. The good news is that the combination of the Vagus Nerve Stimulator (VNS) and an increase in Maggie’s seizure med is helping lessen the intensity of the seizure and the post-ictal phase of the seizure. That means we are able to keep Maggie out of the hospital and manage it from home. That is a huge win.
We’ve also started experimenting with returning to Sunday School, followed up by worship service afterwards. Late last year, we made the decision to only attend one hour of church due to the problems that a lengthy time at church and over-stimulation was causing Maggie. She seems to be handling it well, and is even helping in a 9 year-old Sunday School class.
The thing we have to watch is overstimulation, stressful situations that involve deadlines / timing / expectations, and too much activity. It is actually pretty funny because, on the whole, we’ve never been a family that has been overly busy. In fact, we’ve always tried to lead a somewhat relaxed schedule. Now we just need to watch it even more closely. We also try to keep things as predictable as possible in relation to what is expected of Maggie – routine and habit are good. School work continues to be quite the challenge.
Maggie is still meeting with her speech, OT, and physical therapists several times a week. Sometimes those visits really do her in and it takes her several hours to recover.
Maggie had an MRI earlier this week and it came back normal – no regrowth, no changes. We are continuing to meet with Maggie’s neurologist in Denver and in Colorado Springs every four to six weeks. Having an epileptologist this close is really helping to keep things from reaching a crisis stage.
We are looking forward to the summer and taking a real family vacation together, and continue to pray that we are able to keep Maggie out of the hospital. Our long term prayer is that things will improve for Maggie and not remain predictably unpredictable.
Having Some Fun at NCFCA Region 3 Speech and Debate Tournament
Dax spent this past year getting in to debate, specifically Lincoln / Douglas debate. Kathi and I are very proud of Dax. In just his first year of debate, he qualified to NCFCA Region 3 Invitational Tournament, which is the qualifying tournament for Nationals. Although he didn’t make it past the preliminary rounds, he faced some tough competitors and learned a great deal.
Dax definitely caught the fever for debate and I expect we’ll be spending a lot more time at various tournaments around the state and region this coming year.
Dax and Chris Jeub, one of his coaches from WordsWorth Speech and Debate Club. Chris is also with Training Minds Ministry, a ministry that helps teach young people about logic, debate, speech, and thinking.
What Does “I’m Praying For You” Really Look Like?
It pains me to say that I’ve been more of a beneficiary of others praying for me and my family than my interceding on the behalf of others. It isn’t that I don’t care for others or am not interested in seeing God work in their lives, it’s just that I often fail to follow up on my own commitment to pray for them or their particular need. I don’t write it down, I get so engrossed in my own particular problems or sin, or I just become too darn lazy. In all honesty, it is probably a little bit of each of those and a lot of other stuff not even mentioned. In short, my prayer life reflects the state of my heart at the time – either inward or outward focused.
What I’ve learned from observing and listening to others is that by continually praying for me, they become personally invested in my life. They wake up in the middle of the night to talk to God about me, or they pray for our family during their dinner-time prayer. When they see a blog post or a Facebook status update that indicates things are not going well or things are on an upswing, they stop and bring that before God at that very moment. When I’m talking with someone over the phone, they’ll pray with me before hanging up. I’ll get emails from people asking how I’m doing – they are proactive with regards to matters in my life. How cool is that?
What I’ve learned from these dear friends is that they set aside their own agenda and become a lover of people rather than a lover of self. That love of people comes from being a lover of God and His Word, and it is the Holy Spirit accomplishing that work.
Let’s you and I strive to become lovers of people by becoming a lover of God, thus caring enough for people that we desire to pray for them.
I Wonder What Monday Morning Was Like?
As I woke up this morning to a bright blue sky and a crisp, nippy feeling in the air, I got to thinking about what Monday morning might have been like for the disciples that had just met the risen Jesus the night before. For the disciples, everything changed when “Jesus came and stood among them and said to them, ‘Peace be with you.’”
I can imagine, as the sun broke through the windows early that Monday morning, John rolling over and staring at Jesus while He still slept on the floor next to him. John’s eyes then met Peter’s, their faces expressing both disbelief and a slight grin at the same time. Was Mary already awake, staring outside and wondering lay ahead for them all?
Was it that feeling you and I get after waking up in a new house in a new city – everything is new again. Or was it like stepping outside a tent, while the dew is still fresh on the grass. The air is fresh, the baby birds are talking to their mommy, and everything is just so beautifully quiet and peaceful. Was it like that first day of vacation where you finally feel free to play and have fun?
Whatever the atmosphere was like that Monday morning, fear and weariness was suddenly being replaced by purpose, hope, renewal, and excitement.
Recent Comments