Stress - "You don't know what you've got, 'til it's gone."

You know - sometimes you don't know how stressed you are until some of it goes away.
Today was the first of TWELVE medical appointments for our family in the next THREE weeks. It's not that we're all that unhealthy, it's just that November kind of crept up on us, and caught us unaware. I've been working hard on time-management (which is why I got really annoyed at losing that last blog entry). I've been putting everything into my Outlook Calendar and using it to optimize my schedule and avoid double bookings. Well, I can safely say that it kind of works. I've managed to fit more things into less time than ever before. The problem is, there isn't "less time", so I'm just plain doing more in the same amount of time. My "free time" hasn't grown, and hasn't really shrunk.

But back today. Today's appointment apparently was a source of a great deal of stress that we didn't even know we had. Well, we knew we had stress, but hadn't really clocked today's doctor appointment as being relevant to it. You see, we're renovating during this month too. I'm trying to schedule flooring guys, counter guys, and plumbers to arrive here soon, but not before the stuff they're supposed to be installing. So between this and doctors, I'm pretty busy. Oh yeah, there's work too....

Today we went for the pre-assessment assessment for Doug's Autism tests. We don't think he has it, and never have. But there are some "tendencies" that may put him "in the spectrum". And as good cautious parents, we're taking on the additional stressload just in case there is more to it than meets the eye, and extra support and funding for treating it. Today went well. The doctor interviewed us, and examined Doug. He came to the same conclusion we did, in that Doug is "well outside the spectrum". The relief in the room was tangible. At that point I realized that I was pretty worked up about this - despite believing that there was nothing to worry about. I guess we've experienced the "worst case" diagnosis before, and our bodies were working themselves up to deal with another one.

What have I learned? Stress is bad. Being to busy is stressful - and worst of all - being too busy masks the root causes of stress. Fortunately there's a sermon series under way now at church about managing stress. I'll be paying close attention.

The Journey Begins (Again)

Well, after that last blog entry, you'd have expected us to be going full steam ahead on the steroid therapy. Think again.

We gave our decision a week or so to settle into our minds before I actually worked up enough courage to pick up the phone and call the doctor to tell her that we were going ahead with it. I thought - "ok, we've decided, we've put our name on the next waiting list". Imagine my surprise when the doctor told us that our prescription was being put in that very day, and it would be ready for pickup by the next morning. I was counting on more time to get used to THIS baby step.

I don't know what I was thinking. I guess, I was expecting to hear the voice of James Earl Jones in my head saying "Hey. This is God. You did the right thing.". But I didn't hear that, and I still haven't. I'm getting more and more used to the idea as time goes by, but it's a gradual acceptance. It took about 2-3 weeks before we picked up the prescription. It has taken another week or two before we were ready to actually GIVE it to Doug.

This last step has been a bigger emotional hurdle for Allison than for me. Doug is now on steroid therapy, and one of the side effects of it is that his body shuts down it's own production of the hormone (or whatever) while he is taking the prescription. This means that if we can't get him to keep down the medication for whatever reason, we need to take him to the hospital to have it administered intraveneously. Needles are a big deal to me, so this is no small thing.

And now, we are waiting and watching, and paranoid. Every time he is short tempered we wonder. Is it the irritability of the medication, or the fact that he didn't stop playing and go to sleep until midnight? Are his muscles stronger today, or does he just feel like climbing the stairs more than usual? Either could be the case.

But through all of it, I think the thing I need to remember is that Doug is still Doug. He's not a . He's just a kid. And he's MY kid. And I'll love him more and more each day that I am privileged to spend with him on this earth.

Our First Big Real Decision

Well, here is a Doug update for you.

This has been a challenging month, as we’ve been working through some of the recommendations from the doctors at the Neuromuscular Clinic at Children’s Hospital.

First off, Doug is doing really well. He still has good range of motion in his legs, and the cardiologist appointment yielded even better results than last time. Doug’s heart is still slightly larger than normal, but it hasn’t grown larger as he has, and is therefore closer to the norm. This is good. The orthopaedics department is recommending no current treatments beyond his daily stretches either.

Probably the biggest thing we’ve been dealing with is the decision of whether or not to start him on Deflazacort. This is a steroid treatment aimed at prolonging the period of time that Doug will be walking. It provides a short term boost in his muscle development. To be completely clear here – this is NOT a long term cure. Its goal is to help keep Doug walking for a few years longer, potentially through one of the more critical growth spurts. This steroid is NOT available for purchase in Canada or the United States. It is provided free of charge to Children’s Hospital as part of a study by the manufacturer. It IS used in many other countries around the world.

I know you’ll have a lot of questions, and I can’t answer them all right now. In coming to this decision, we have talked to a Paediatric Neurologist, a Paediatric Orthopaedic Surgeon, and a Cardiologist. We also spent an evening with a couple who have a 15 year old son who has been on Deflazacort. He chose to come off of it for a variety of reasons, but they still recommended it. We’ve read internet research papers and we have prayed. It is not something we’ve decided in a vacuum.

The impacts that this drug has that are beneficial to MD patients are:

• increased muscle strength (short term)
• prolonged ambulation – walking through growth spurts reduces scoliosis
• slower height growth (shorter people have less stress on their spines)
• slower onset of heart and lung problems
• slower onset of loss of arm function

There are, of course, some potential side effects. Balancing the benefits and the potential risks was (and will continue to be) a very difficult and emotional matter for us. The significant POTENTIAL side effects are:

• weight gain
• mood changes
• rounding of facial features
• calcium deficiency
• potential to develop cataracts – generally in areas not impacting vision
• increased chances of infections

Once started, it IS possible to stop if we don’t feel the benefits outweigh the costs. In most cases, the side effects will stop as well. It is also possible to adjust dosages and schedules to get the best benefit for the least costs. We WILL be monitoring this constantly as he grows.

As you can imagine, this has not been easy for us. We’re going to ask for your help in several areas. Here’s a good starting point.

1. Please – research it as much as you want. The more you know the better. If you want to be connected to Muscluar Dystrophy Canada for more info, we’d be happy to hook you up. (www.muscles.ca (Canada) and www.parentprojectmd.org (US based))
2. We’re looking for support for our decision. Please do not try to second guess this. It was hard enough to come to this point, and we need our family and friends standing behind us. Yes, some of the side effects may be less than ideal – and we likely feel the same as you do, but mourning them in front of us is extremely painful.
3. See #2 (Please don’t phone us today about this. Let it sink in first.)
4. We’ll have some additional medical routines for Doug. As we find out what they are, we’ll keep you posted. Things like his medication and supplements will be critical, and we’ll need your help to keep him on track if he’s staying over for a weekend or something.

I don’t know how one ends a blog like this, so I’ll just leave it here.

Camels and Straws

I know this sounds really quite tiny and petty - but the day after our Children's Hospital mental drainage, Allison got a letter in the mail for Jury Duty. On the first day of school no less.

I don't know if you've seen the Princess Bride lately, but there's a scene where the "hero" is clinging to a cliff by his fingernails after the rope he was climbing up got cut. He's making his way up the cliff, but it's slow going. My life sometimes feels like that. Everyone else gets to climb up a rope, and I'm stuck over an impossibly tall cliff holding on by my fingers. Now, in the movie, a rope gets thrown down, and the hero climbs up. In MY movie, it seems like someone at the top is flinging rotton vegetables down at me. The "mouldy tomato" of jury duty by itself is not a mortal blow - but is enough to challenge my grip.

I'm rambling. A symptom of lack of sleep.

[[Updated: August 29th - Allison got permission yesterday to be excused from Jury Duty! Our doctor rocks!]]

Did anyone get the number of that truck?

Today is the morning after our 2 days of appointments at Children's Hospital, and I feel like I've been either run over by a truck, or used as Mike Tyson's punching bag. It has been an extremely emotionally draining week.

Our appointments started on Tuesday with a bit of a rocky start. The physiotherapist for the day had already not been scheduled, and when we got there, our first appointment was also cancelled. The ocupational therapist was sick. So we had a "break" right away, followed by a 15 minute info session, followed by another "break". We're not morning people, so it was a painful case of hurry up and wait. I was beginning to feel like I was just a tiny, ignored, cog in the wheel. Doug enjoyed the waiting room though. I will certainly give Children's Hospital a thumbs up for their waiting rooms. Every room in that building has it's own little toybox. No matter where you have to wait, the kids have something to do.

The afternoon was tougher. We met with an pediatric orthopedic surgeon, and a neuromuscular specialist. There were a LOT of questions asked. I felt like I was being grilled at the East German border crossing. "Eeef you do not tell uz vat ve vant to know, ve vill take your child avay!" I know they're only doing their jobs, but the depth and breadth of the questions were draining to answer. Every possible area of Doug's life was explored. They seemed to concentrate on the problem areas (which I guess makes sense) leaving areas where he is doing just fine alone. This left me with a big knot in my stomache. It seemed that there is so MUCH that just isn't right. Given some time and space I can remind myself of all the things that ARE right, and that will add perspective. We also had a discussion with the doctor regarding long-term treatments and medications. We've got some serious thinking and soul searching to do. Please pray for wisdom here.

When we got home there was a CCRA "random audit" notice in the mailbox.

Thursday was a lighter day appointment wise. We had 2 tests and a cardiologist appointment. Doug does NOT like EKGs. He has had a bad experience with the "stickers" they use, and clearly has not forgotten it over the past year. Add to the challenge that neither of the two tests can be done unless Doug is calm, and the stress level in the rooms was high. Through some exceptionally good fathering, and some really pathetic bubble blowing by Allison, Doug settled down. He still hated the stickers being removed. You would have thought we were were ripping 8 inch sections of hockey tape out of his hair by the sounds he was making. (and yes, I HAVE heard that particular sound) Our cardiologist certainly seems good. He had a good way with Doug, and besides delivering good news, was pretty good at communicating.

You know - all of our doctors are very good. We're dealing with some really top flight professionals. Professionals who specialize in treating children like Doug. What they have to say sometimes isn't easy to hear, and it certainly isn't easy to share with friends and family. Yes, doctors can be wrong from time to time, but what we need to hear from our friends is empathy. Especially during these emotionally loaded time periods, disagreements over the diagnosis only re-open sore wounds. Just give us a hug. Later, when we all have had time to think things through, we can talk about logical, fact based differences of opinion on treatment options and diagnosis.

And keep praying.