So what is a "clinic" anyways?

I've had a number of people ask me about Doug's medical appointment schedule. I complain a lot about it, but I don't know if I've ever really described it. We had one of his semi-annual "Neuromuscular Clinic" appointments last week. (Tuesday-Wednesday) Here's a brief snapshot of what that is like.

Tuesday
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8:00am - Meet the Pediatric Orthopedic Surgeon. A couple things come to mind here. Note the time. This is not a time of day that is very compatible with our family. The appointment is at BC Children's Hospital downtown. This means a VERY early start - we're looking at traveling in the peak of rush hour. We book a hotel room for the night before that is 15 minutes from the hospital. Anyhow, this particular doctor is one of Doug's favorites. It doesn't take too much convincing to get him to sit still for his examination. The prognosis? Everything is still looking reasonable from an orthopedic point of view. No night splints, special shoe inserts, or other adaptive measures are needed at this time. It's good to have an "easy" appointment up first.

9:00am - Meet the Neurologist. Well, actually, we first go through a rather lengthly update and question and answer period with a medical student of some kind. The Neurologist then comes in and is briefed in by the student. We fill in any gaps, and then Doug is examined again. This involves both getting him to perform tasks (get up off of his back, walk up stairs, run, etc.) and by checking his muscle tone, flexibility, and other typical examination things. We spent a lot of time trying to get a blood pressure reading, but blood pressure is something that Doug does NOT do. Ever. We're brought up to speed on how he is doing (generally well) and encouraged to ask questions. It's not easy remembering everything she's said AND our questions and concerns, but we muddle through it. One of the things we've been wondering about is his weight. One doctor says to gain weight, the other says to lose it. We get some hard(ish) targets. 25-50th percentile for height, and 5-15th for weight. Unsurprisingly, I have no clue what he is currently at.

10:00am (planned) - Occupational Therapist. The OT, once again, is away. In all the time we've been coming to the clinic, we have never yet met his OT. In fact, we've only seen an OT once, and that was a fill-in. I'm not really sure that occupational therapists even exist - he was on a waiting list for one the entire time he was in both the Infant Development Program, and Child Development Program. He (allegedly) saw an OT a couple times on a consultation basis, but since it happened at school, I have no hard evidence...

10:00am (actual) - Instead we got to move our afternoon appointment with the nurse to the morning. She had a whole mess of questions of primarily an administrative nature. Keeping up with which programs we were on and not on, and generally trying to hold the big picture together. She updated us on the Parent Project - which is apparently starting up in Canada now. This is good news. We tried to get Doug weighed and measured, and he really hated that. Another half hearted attempt to get a blood pressure reading was made - and failed miserably.

11:00am - Physiotherapist. Another session of questions. She must have had a 10 page document where we updated her on everything including: how far Doug can walk without resting, what kind of car we drive, how many stairs are in our house, and which side the railing is on. Then Doug had to submit himself to a very thorough examination of flexibility and strength. With a variety of measuring tools, she worked her way through what had to be 3 pages of roughly 50 measurements. Doug did remarkably well in trying to follow her directions. Allison did a pretty fair job of keeping up with writing down all of the answers too! Prognosis? Not too bad. The steroids seem to be giving him strength for now. We need to do a bit more work on stretching his hamstrings and heel cords. Guilty Parent Syndrome.

Somewhere in there we also met with a Muscular Dystrophy Canada volunteer. She told us about some of the things MDC was up to, and some upcoming seminars. We also had another session with the nurse. The paperwork never ceases.

There were a few more things too, but I can't for the life of me remember them now. We ended up heading out of Vancouver mid-afternoonish. We were very brain fried.

Wednesday
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10:20am - Back at Children's for day 2. At least this time we didn't have to get up at the crack of dawn. First appointment was a bone density scan. I had never seen one of these before, so I didn't quite know how to prep Doug. By this point in his life, he has had enough medical tests and examinations to be (understandably) hesitant. Asking him to lie _completely_ still on a moving table while a machine makes noise and moves an ominous looking arm back and forth over his body for several minutes at a time was NOT looking good. The technicians were spectacular. (I guess you wouldn't work at that hospital if you didn't have a way with kids) They managed to convince him to lie down. We held him still with (just a little) masking tape, and they managed to get a few passable scans. No word on results is expected until our next clinic visit. I expect this is baseline data.

2:20pm - Cardiology. Well, the heart is a muscle too, so cardiology is very interested in Doug. And Doug, well, as nice as the people are, just doesn't want to do blood pressure. He wasn't keen on the EKG either - but it was far less of a battle than his previous 3. Those stickers really don't like to come off of his tender little skin - and he remembers it. Follow that up with an ultrasound - another challenge to attach electrodes and have him lie still. By the time we saw the cardiologist in person (the previous tests being done by 3-4 different technicians) I'm pretty burned out. Burying my stress and being "Calm And Reassuring Man" to my kid for 2 days of intense testing takes a lot out of me. There is nothing really new to report from cardiology. Doug's heart is still slightly enlarged, and the doctor is proposing some medication to ease the workload on his heart. The catch is that there is no hard evidence to show that it WILL do anything. But it _probably_ has _some_ benefit, while carrying a _low_ likelihood of _somewhat_ adverse side effects. How's that for hard medical evidence to make a decision on? We've filled the prescription, but are doing to do a little looking on our own first before deciding whether or not to give it to him. We weren't in a frame of mind to make that sort of decision on that day. The doctor respected that, and was completely fine with our approach.

So, after a "lighter" second day, we hit rush hour to battle our way back home.

And there you have it, a glimpse into a couple of days of medical appointments. This clinic repeats itself every 6 months in our lives. It is a little more involved, and a little longer each time 'round. So if you see me looking a little drained after one of these, please be patient and understanding. Thanks.

Oh yeah. We were home for about half an hour before we had to be at school for Meet The Teacher night. I hope the teacher doesn't think we're normally zombies.

Living Life at Full Volume

It's been a long time since I've had a chance to blog. I've been out of the country, and when I got back it's straight into crunch time at work. We've got a client with a tight deadline, and I got duped into the project management role. I'm not quite sure how it happened, but it has sucked every bit of my time and energy since I've landed.

So, what does this have to do with Living Life at Full Volume? It's about taking the fragmented pieces of life, and enjoying each and every one of them. It's about taking life, and cranking up the volume so you hear each and every note.

September is a busy month. It's especially busy with Doug starting Kindergarten. It's not so much the starting Kindergarten that's the problem, it's the fact that with his 5th birthday he transitions from one medical system to another. We get to go through an entire new set of assessments and meetings to train up another set of people on who Doug is. Don't get me wrong, their all great people, but we've spent a couple months now in transition meetings. First you have to transition out of one program, then you get to transition into another. And the binder of paperwork and reviews gets bigger. Toss in dealing with the school system - which is full of stories both good and bad. Will he be approved for the funding he needs? Will he GET the funding he is approved for? (Schools receive funding on a per student basis, but those funds are spent at the discretion of the local school. Doug's "bucket of money" may be pilfered from to go to other students.) The first few meetings with the school have been very vague on what exactly Doug's support will be. Nobody wants to say anything for sure.

So. Life is busy. Crazy busy. 2-3 school/medical appointments per week, unlimited overtime at work, seeing my family after a month away, and fall program startup season.

This is leaving me with little chunks of time scattered like a shotgun pellets across my calender. I find myself sitting down in little 1/2 hour chunks of time trying to do something while my mind races wildly away to what is going to happen next.

What I need to do is Live Life at Full Volume. Now is for now. If I'm working - I need to focus on work. No distractions, no "I'll just finish this off while I wait for the download to finish". If I'm helping the kids with their homework I will focus on their needs - not try to catch the news hour from the other room. When it's time to relax - that means relax. Ignore the e-mail, the MSN, the phone. Concentrate on relaxing. This is the hardest of all. I can make my body stop working, but my mind keeps churning.

Multitasking may seem to be an efficient way to live life - but do you really LIVE life?