Sunday, July 20, 2014
A plan (finally)
After my post last week about J's health, I've received a lot of messages from folks asking how the appointment went and what the outcome was. Some of the messages were showing general concern but a number were also curious about what happened in the appointment and how they plan to manage J's fatigue.
We met with a pediatrician and a psychologist for about an hour. In that time they met the whole family, spent time talking to J alone and then they talked with Rowan and I alone. What I appreciated about the appointment was that they were very straight with us. They weren't critical and were in fact quite encouraging about different things we'd already tried (like waking her up before she'd naturally wake up, getting her to do a small amount of exercise each day).
But they were very clear about what she has to do to get better and explained the plan to the whole family. They also said that some of her other symptoms (like sore knees, a sore tummy, headaches) were a common part of chronic fatigue but they don't know exactly why. She also needs to see a psychologist each week to help her with strategies to manage the emotional feelings that come with the fatigue.
That afternoon the hospital psychologist emailed us a timetable. You can't understand how grateful I am for that piece of paper. I find just getting through the logistics of each day difficult enough anyway, so if they'd given us verbal, general instructions I would have found that stressful. The piece of paper is a non-negotiable. Rowan and I can't differ in our perceptions about what was 'said' (which is always tricky with the aftermath of these kinds of medical appointments). J can't argue with us about what needs to be done. It's very clear and specific. And it's not her parents telling her what to do.
So, the first big change is that she can't lie down all day. She needs to be upright because lying down is compromising her muscle strength and circulation. This was very, very difficult for her the first day. She cried a lot (Rowan dealt with this thankfully because I was at work). She was begging to be allowed to lie down. But she was OK about this by the second day.
We have to wake her every morning at 8 am. She has been waking at 10 am for months. I had been worried that her sleep pattern had shifted so this makes a lot of sense to me. She's allowed to sleep in a bit on the weekends. But during the week she has to get up, get dressed and eat breakfast.
She is starting with three half days of school. Monday, Wednesday, Friday. On the days she's not at school she needs to do three 20 minutes sessions of school work (mimicking the three sessions of a school day). She has done almost no school work all year and her excuse is that she can't concentrate very well (but just quietly, I suspect it's because she's not all that interested in it!). This amount of school will increase over time, assuming she copes with this (I'm a bit dubious).
Every day she has to do 15 minutes of gentle exercise and this is supposed to increase over the weeks too. This hasn't been such a shock for her (we'd already been trying to do that most days) but it has been very cold and windy this week, so going for a walk is not appealing at all.
How's it going? Hard to tell. She's accepting of the structure and seems to be understanding better that she's rarely going to feel like doing a lot of it (this has been part of our struggle as parents - how hard do you push when she keeps saying she doesn't feel like doing something?). I'm expecting more meltdowns because the structure is quite demanding compared to what she's been doing.
Thankfully we're a fairly routine orientated family anyway, so it's not too much of a shock. But we do need to be a bit precious about the routine to maintain consistency (eg. making sure she's woken up on time, gets to bed on time). Being precious is not my natural style at all, but circumstances sometimes force this upon you. I remember feeling like this when our eldest was diagnosed as allergic to a whole lot of food when he was a toddler - that suddenly I needed to become one of the 'those' fussy mums to protect his health. It's just what you need to do to be a responsible parent.
So we'll see how we get on. I feel thankful for a plan and some direction at this point in time.