Slumber Party

Since having Joshua, my sleep patterns have been varied and I will tend to adopt a particular pattern for a few months and then move onto something different. At the moment I am sleeping very deeply for just 5-6 hours : I struggle to keep my eyes open beyond 11pm, and I know that as soon as my head hits my pillow, that I will fall into a deep, deep sleep. So in this mode, I am much less alert to any noises that Joshua makes in the night. So last night, for instance, the first that I knew that Joshua was awake and out of his bed was when he was standing over me in my bedroom. Once up at 1.15, I could see that he had been downstairs  wandering about, but I had heard nothing of that. I snuggled in next to him in his bed and we both nodded off, despite his barking cough, which kept rousing me from my slumber. Now at 4am, I have given up and I have slid out of bed and come downstairs.

Before this pattern, I would struggle to get to sleep at bedtime , then sleep lightly and struggle to wake up and get going in the morning, so the opposite to this pattern. The worst period during Joshua’s lifetime was after his brain surgery in 2014, the surgeon seemed to have altered some setting in his brain. As a result, after seizures, Joshua would be unable to sleep at all for 48 hours. He looked like a walking zombie, but his brain would not let him close his eyes. It was not that he would lie quietly in bed either, he would need close supervision as he was restless, wandering around the house, unsure really what to do with himself. That was a very difficult time, as none of us really slept properly for years. But even as a baby, he would always wake around 3am, so even in the early days I would envy those mothers whose babies “slept through”, as I never really knew what that was like.

I am sure that your body adjusts to disturbed sleep and in my case , I can function on relatively little sleep – half as many hours as my husband. But one of the real perks of holidays, are that I can enjoy a siesta, around 4pm which is my sleepy time. When I can top up on sleep, albeit just an additional 20-30 minutes, I feel so much better heading into the evening.

Unusually, both of my coughing men have joined me this morning at 4.30, so I do not have this precious time to myself. I have given Joshua his cereal and medication and sent him back to bed with Madagascar on the ipad, so I am hoping that he will soon nod off, then normal service will be resumed.

Advertisements

Crash, bang, wallop

Yesterday I wrote about the unpredictability of Joshua’s behaviour, but last night I was faced with another element of unpredictability : his epilepsy. He had arrived home from school simply exhausted, as he often does by Friday , so much so that he had curled up to sleep on the settee, almost immediately for a nap for an hour. He had his tea then an early bath, once he woke up and was on good form after his sleep, as though he was then fully topped up.

I took him into his bedroom from the bathroom , where I began to dry him. Then I turned away to pick up his pyjamas, and heard a crash: a tonic clonic seizure had taken hold of him and unusually, he had crashed forwards rather than backwards. If he had gone back, he would simply have landed softly on his bed but sadly he went forwards this time, into his chest of drawers – he sent everything flying and even knocked the TV over, so that it landed on his head. While Joshua is fitting, all his limbs are stiff so I was trying to lift him off the drawers, concerned that he might have broken a rib, but he was so solid and stiff that he was difficult to manoeuvre. I had to wait for the seizure to subside to be able to lower him onto the floor, where he lay flat out while his eyes darted around his head still.

My husband appeared on the scene, having heard the crash from downstairs, and he found a blanket to cover him up with ,then fetched the emergency medicine, just in case, as the seizure was still going on. After what seemed like an eternity, Joshua pointed at me and smiled, then gradually he tried to sit up. He had gone ghostly white and he looked shattered, so I continued to get him in his pyjamas and slid him into bed. Unfortunately it took several attempts to get him to stay in his bed and even later, before he gave in to sleep.

When I woke up at 5am this morning, I was surprised to find Joshua in with me as I have no memory of him climbing in! I slid out and came downstairs to let the dogs out but soon afterwards, a bleary eyed Joshua appeared downstairs too. I gave him some weetabix ,which he ate greedily, then he took himself back up to bed and all quiet for now.

I am out of practice of those full tonic clonic seizures, more recently he has had clusters of jerks rather than seizures that throw him around. It just shows how quickly things can change, as I only turned my back on him for a couple of seconds. Luckily no real harm was done and we survived in tact.

There’s no Place like Granny’s Home

I stayed last night at Mum’s house as I need to be in this area for work and as it is still the school holidays, Joshua came with me to see his Granny. We drove across in the afternoon and he was very excited as we pulled into the drive. He burst in through the front door and immediately pounced on the piano, banging out a welcome tune with a flourish. I had just five minutes to brief my mum, then I left them to it as I went to my meeting, Granny was cutting up some apple for him as I left.

Joshua was delighted to see me two hours later when I got back and it sounded as though he had been full of beans, there were coasters and cushions scattered on the floor of most downstairs rooms. I sat at the kitchen table drinking my cup of tea, chatting, when we heard footsteps overhead. I went upstairs to find the culprit and Joshua stuck his cheeky head out of the door of the spare room, where he was clearly about to strip the bed. So I brought him back downstairs, where he began sweeping the hall carpet. The only time that he sat still was two enjoy his homemade fish pie – he had seconds! – and then he was busy again.

I decided on an early bath to settle him down, where there was rather a lot of splashing, so we went staright from the bath across the landing to bed and some calming stories. He snuggled down and I lay next to him for a while, and it seemed as though he would fall asleep. I was dozing off myself when I remembered he had not had his bedtime medication, so I crept downstairs to get it. I met a stripey-pyjama clad grinning young man on the stairs, heading back down to say hello to Granny, on my way up, so I managed to turn him around and we went back to bed together. Whether the melatonin did its job or he just admitted defeat, I am not sure but there were no more jumping-out-of-bed incidents and he settled  down to sleep…

Well until some time in the midle of the night, it was still dark, when he found me in my single bed and climbed in too. It was quite a squash but we both went back to sleep and he is still there now.

Beauty Sleep

Yesterday I only saw Joshua awake for less than 90 minutes in total, which is quite a change from our recent fortnight away, when we were together constantly. He woke up just 30 minutes before I was ready to go to work and so I had time to bring him downstairs, and to prepare his breakfast for his Dad to give to him, once I had left for the office.

He spent the day with Yorkshire Grandma, apparently he gave her a lovely welcome as I am sure that he had missed her. During their day together, he showed her how much his appetite had improved and he played his favourite two tricks of flashing his bare tummy and of grabbing her glasses off her face. At my request she had kept hold of him to give him his evening meal, so he did not get home until 8pm. I was given one of his bear hugs when he returned and then he settled in his den to watch some Robbie Williams on his DVD.

But he was restless and he climbed the stairs, before I had eaten my evening meal, saying “bed” so he lay on his bed, in his pyjamas, watching ‘Lion KIng’ while we ate downstairs. I took his medication up when I had eaten – he has taken a bedtime anti-epileptic drug as well as Melatonin for over a year now –  and he took it willingly, as it indicates that it is time for a story then lights out. He snuggled down straight away, tired enough from  playing tricks all day.

Joshua’s bedtime routine has never been as easy as this, for most of his life he has been reluctant to go to bed, reluctant to stay in bed  and has woken around the magic 3am too. I have spent countless nights awake with him, particularly after seizures, he went through a stage of staying awake for 48 hours and this torturous phase lasted for over a year. The fact that now he will go to bed willingly at 9 pm, so that the bedtime routine is brief and successful, and that he usually sleeps through, is life-changing for us both: I get some of the evening to myself, which I rarely had and now any wakefulness at night is usually my own doing, rather than being down to Joshua, so I am better rested than ever. I used to have to snuggle him to sleep so more often than not, would fall asleep in his bed, but no I get to sleep mostly in my own bed.

Joshua too is better rested than ever, meaning that he can stay awake all day and that he can be lively and cheeky during the day. I am sure that his improved communication skills and greater level of alertness can be attributed to his improved sleeping patterns, as he has a consistency that he has never had before. H eis now typically asleep from 9pm until 7-8am which is the best that he has slept for his whole life. It has taken him 17 years to get the hang of sleeping at  night but lets hope, now that he has cracked that habit, that he never loses it , as I am definitely out of practice now, thankfully.

Knights in shining armour

The anticipated seizure never came it seems, but Joshua must have slept for 23 hours yesterday, catching up on the three previous missing nights’ sleep. He finally decided around 7am yesterday to go to sleep, much to my frustration.  His legs were so weak that they kept giving way under him while I was dressing him in his school uniform, but I had no alternative, he had to go to school yesterday as I had commitments and neither my husband nor Yorkshire Grandma were available, as they had been earlier in the week. As I put his splints on, he returned to his deep sleep and so he virtually sleep walked to the car ; I reversed it up to the door so that I minimised his walk. He was no company on the drive to school, as he snored throughout the journey. I usually load his wheelchair up with bags and expect Joshua to walk into school, with him helping to push and that way, he greets everyone we meet as we walk down the corridor to his classroom, but not yesterday : as I got him out of the car, his knees buckled from under him and he almost dropped to the ground, but I caught him and lowered him into his wheelchair, throwing the bags out with my other hand.

It was clear that Joshua needed to sleep all day long; at first he was lowered from his wheelchair onto his giant beanbag where he was made comfortable by removing his boots, splints and helmet – they are all equipment necessary only when he is mobile and Joshua was far from mobile. It soon became clear that Joshua was going to remain asleep for several hours and so he was transferred onto a padded bed, where he curled up immediately and was oblivious to the teaching staff and his classmates who surrounded him.

I was shocked when I returned to collect Joshua at the end of the school day, to find that he had orange around his mouth, indicating that he had been awake long enough at some point ,to eat the bag of Wotsits that were in his pack-up. Apparently his eyes had opened during around lunchtime, briefly, but long enough to consume some snacks. Then it was a case of deja vu, helping a very sleepy boy back into the car to drive him home again. He had not achieved much academically at school yesterday, but they had been able to keep him safe as he caught up on his sleep, and for that I am grateful as it enabled me to honour my plans, whereas in the old days I might have been more inclined to cancel and keep him at home with me. Joshua stayed awake long enough, once he sleep-walked back into the snug, to eat his tea, before he got comfy in his armchair and resumed his dreamy state, ignoring Wimbledon on the television, unimpressed as energetic players ran around the tennis court.

At bedtime, I walked him to his downstairs bed, where he curled up again  and where he has slept soundly all night. It is his respite weekend again from tonight and, given the difficult few nights that we have had lately, they will be my knights in shining armour, allowing us some catch up time so that we can begin next week, which promises to be a busy one, more relaxed and refreshed and able to cope.

All Back together again

It felt as though I had not seen Joshua for ages and so I left work early so that I could meet him from school, rather than asking Yorkshire Grandma.His homecoming was like a mardi gras, he was so excited and was clearly happy to be home again After lots of hugs and smiles, Joshua of course wanted to become re-acquainted with The Show – after all he had not watched it since Friday afternoon! He sat enraptured, as though he was watching it for the first time, while I read his detailed diary from his respite provision. They write an excellent account of the weekend, full of detail that I like to know such as how well he ate, what activities he engaged in – they took him to a Farm on Saturday and a garden on Sunday it seems – , how much he slept and the mood he was in.

I also have the Fitbit’s estimate of Joshua’s sleep pattern to compare and now I have more faith in its accuracy as it confirmed last Friday that he slept for 9 hours and 13 minutes all in the day from 06.17, after his seizure and then I administered his emergency medication at 6am. It shows that he had around twelve hours sleep on Saturday and Sunday, which would be normal for a weekend. I analyse trends of data as part of my job and so I have a fascination with this type of information. I can add it to my Excel spreadsheet that monitors Joshua’s seizure activity. It represents a great record to look back on when Doctors ask how his seizures have been, rather than relying upon my recall which was always good for the previous week but was distorted much further away than that.

After Joshua had eaten his tea, he had a bath and hair wash and he was still smiling. They had worn him out both at respite and school, so he was tucked up in bed pretty early, despite it being a light evening outside. He usually takes a while to adjust after a school holiday, so we will see if he can stay awake at school, it sounds as though he managed it yesterday, although he does not arrive until after 10.30 after respite so he was just in time for some toast at snack time then a swim before lunch. What a life my son has!

Struggling to stay awake

I saw Joshua’s eyes open for about an hour of yesterday and that was only because I drove him into school, otherwise it would have been for about 20 minutes ! He was reluctant to wake up for school, I think the bank holiday fooled him too and he was hoping it was half term week already, but of course I insisted that he get up. He gave me a look of disdain as if to ask hey, are you talking to me? As usual he complained with his ‘no, no, no’ as he tugged the duvet back over his head, but once again I won that particular battle. He is happy enough once he is vertical, it is just when he is still horizontal that he tries it on, but once he realises that I will not back down, he goes with the flow.

As he was pretty last minute getting up, he came straight downstairs, through the kitchen and out to the car, there was no time for any dancing to The Show before school. So I had music on full blast in the car as we pulled off the drive and he bopped in the front passenger seat for a good ten minutes, before putting his head on his cushion and returning to one of his favourite sleeping positions, with his head bent over on his knees.

Joshua tried his ‘ no, no no’ trick again when we got to school and I unloaded all his and my things onto the wheelchair, as I insist he walks into class, rather than starting the day in his chair. So he helps me push his wheelchair into school and down the corridor to his classroom, where he made a bee-line for the settee! I knew that this was going to be a sleepy day and when I caught a glimpse of him at lunchtime in the dining hall, he was trying to put his head down on his full plate!

I was at work until 6pm and when I got home, Joshua was back asleep in his armchair, with Yorkshire Grandma having fed him. He dozed there most of the evening, until I walked him next door to his downstairs bedroom, where he curled up like a dormouse immediately. He has slept all night, even though he has slid down to the bottom of the bed, he feet were up against the door when I opened it to check on him half an hour ago, so I pulled him back up to the top of the bed, with his head back on the pillow, and he resumed his dreams – how wonderful it must be to be such a deep sleeper. I am hoping that he is all topped up now and that he can manage to stay awake at school today, but Joshua really is his own man.