Heading out of the woods

I think we are. 

Jackson has now had two full nights' sleep. His energy levels are still low but he is making amazing progress. It may not sound much but today he went downstairs and made his own breakfast.  For the record, and those who want some more details I'll attempt a fuller update below. 

Otherwise a fairly ordinary Monday.  

Lesley x

Jackson update:
Three weeks ago Jackson saw the sleep specialist for the first time.  Since then he has been following a strict sleep program which has involved a routine of certain sleep and wake times and sleeping pills (and briefly melatonin but he had some quite extreme side effects from that so the doc took him off pretty quickly).  

The diagnosis is that the concussion caused a disruption to the chemicals in the part of the brain that controls sleep which explains why his sleep has been all over the place and he has had a variety of sleep issues. At some point (probably about 3 months ago) his body clock got set again. But wrong.  So the sleep program is all about shifting the clock back to the right time.  At the follow up appointment last week, a combination of the sleep journal, the tracker and our reporting showed that his clock is moving. Though amusingly for us, the doc believes that Jackson has a stubborn body clock. Given this is the child who has woken up pretty much on the dot of 6am for probably more than half his life we were not that surprised. From the doc's point of view I just think it meant he thought it might have moved a little quicker but it doesn't matter as what does matter is that it is moving.  And with it so many other things. 

The wrongly set body clock has meant that his night-time brain has been trying to be in charge during the day. As the main job of the night-time brain is to shut the body down to get some sleep, this explains the difficulties with walking, talking and basically any sort of functioning during the day. Essentially the night-time brain has largely been winning, falling just short of him actually sleeping which he has managed to push-back on. 

From last Wednesday J hasn't had headaches or dizziness during the day and is able to walk normally (for a while he couldn't walk without stumbling or falling over) which indicates that he is now winning the battle against the night-time brain.  So that's the daytime stuff.  

During the night he has been having the opposite battle....but we have gone from being awake from 10.30pm to 5am to sleeping through the last two nights.  It has been just over 6 months since the injury so he is owed some sleep.  Some of the symptoms are probably down to fatigue or exhaustion and it's a bit difficult to pick apart what is that and what is the whole messed up body clock thing but that probably doesn't matter. What does is that the sleep/wake cycle is getting back to normal and hopefully the advantage of having a stubborn body clock will mean that once fixed it will stay that way.   The doc is delighted with all the progress, though is exercising caution and still wants Jackson to attend a sleep test on Friday night to make sure we aren't missing anything. Jackson is very not keen on the whole thing - partly I think he thinks it is weird to sleep with someone watching and plugged into a machine and partly I think he is simply fed up of appointments and being poked and prodded.  But it is the sensible thing to do for peace of mind so he is getting to terms with it. And hopefully before then we will have been able to get him to school and  distract him with some end of term fun. 

Wondering if there's anything I've missed noting and remembering that the sleeping pills he is on are psychotropic drugs...we were more than a little nervous the first couple of days he took them but he doesn't seem to have seen any pink fluffy unicorns dancing on rainbows.  Well none he has mentioned anyway. 

As for us, well I won't write for Carlos but I hope that as a natural born worrier he is gaining some perspective on what to worry about and what not to. And for me, I think one of the biggest challenges has been the lack of certainty and ability to plan and have anything be under your own control. To go from someone who favours fairly long-term planning to someone who goes to bed at night not knowing what they will wake up to the next day has been a little abrupt to say the least. But I think I have got something from it and won't be in a hurry to swing the pendulum all the way back. It's been a crash course in dealing with uncertainty for us both and hopefully we have built up a little resilience.