The Lodger and Us

It's 3am. It's beeping again. It might stop. It doesn't. How many times is this? Only 4. A good night so far. I head stumbling for the Lodgers room. He's asleep, oblivious to the constant monotonous beeping. I fix the strap back on his face and the beeping stops. For now. Time for a quick snooze before the next one. So far a below average night from the average 7/8 trips across the landing and the World Record of eleven but that was in the midst of a head cold so I'll allow him that. Him and his bloody beeping mask . But yet I am no more tired than I was before the Lodger, before his mask, before PWS. I'm trained. Self-trained, and for the most part self-taught, in the adventures of Prader Willi Syndrome. The beeping rules are simple. Beeping mask when we're awake not my problem. Beeping mask when we're asleep, very much my area. I don't know how we got to this agreement but it works. Possibly wifey enjoys the sound of consistent be...

Sometimes you enjoy spending time with your child. I'd even go as far as saying most of the time it's enjoyable. But then there are those other times... It's 5am. I know because I've checked the phone, undetected, hopefully, as The Silent Shuffle Monster makes his way through the darkness. The Lodger is awake.  I always check the time in trying to understand this next crazy symptom of Prader-Willi Syndrome.  The dreaded early waking.  I not sure on the specific reasons or causes for this. Possibly hunger or a low blood sugar level or possibly anxiety relating to the ' Will they remember to give me breakfast?' A consistent worry in the world of PWS. Ive captured this moment before, the waking and slow approach, It happens like this. The Lodger wakes, reaches out turns off his sleep apnoea machine and carefully removes his mask. He then slips carefully from the bed making sure not to wake  Walter  and pulling the covers back up on him. Imp...

It's Saturday night. For the last few weeks The Lodger has been struggling to keep his mask on at night and we're struggling to get up every half hour to check, so he's been promoted to our bed.  The usual ritual is we put the lodger down about 8 o'clock, he asks for his mask and nose pads, we read a chapter from the horse book and off he goes to Neverland.  So it's still Saturday night. It's gone ten. We're deep in the latest boxset when there's suddenly a bang...but not on the tele. Followed by the crying. We both sprint for the stairs to be met by this: Although a little unhappier than the picture depicts. The little baby elephant crawling around dazed and confused. We shouldn't have but we did. We had a little chuckle. The elephant was fine by the way. I assume he landed on his trunk. Onwards on upwards...next stop containing the sleeping elephant.

The Lodger entered the latest phase of his war on PWS recently. The dreaded CPAP (continuous positive airway pressure) machine. A breathing mask that supplies a constant and steady air pressure into his airways through the night to counteract the sleep apno ea.  Just at the same time he learnt his new favourite word...No.  No No No No No No No No. Everything is No. Well not everything, dinner is becoming increasingly Yes but that's another story. But generally The Lodger loves using the word No. And we don't mind because it's all friendly family banter. If we followed his replies we'd never go anywhere, we'd never come home from where we didn't go, he'd never sleep, never play, never sit, never stand, never do anything. Just No. In fact he can be very stubborn on the fact that he definitely doesn't want to do either of two very opposite things. But I haven't explained to him the error of his ways there yet. Sometimes he says No to the thing...