I am safely back home and re-united with my family and it is starting to feel already as though I have not been away. I drove home from the airport and as I came up the lane where we live, I could see two tall, thin men walking away from me, arm in arm. It was Joshua and his Dad out for a stroll while lunch cooked. I slowed down my car next to them and wound down my window to say hello; Joshua beamed, pointed at me and shouted ‘mummy!’ which was the perfect welcome. I drove into the drive and Joshua dragged his Dad along to check that it was really me and I was given a bear hug in the yard. Once indoors, he kept doing double- takes to make sure it was really me and grinning, there was no doubt that he had missed me and was pleased that I was home again.
After a cup of tea and sharing out the gifts that I had brought back, I tried to encourage Joshua to take a nap with me but he was not tired and he knelt up in bed, then began his favourite hair pulling and smacking my back to wake me up. I gave in and we had a bath instead. Then I took a three hour nap on my own while poor Joshua had to watch an England football match with his Dad.
Joshua seems to be brewing a seizure as it is now 1.30am and he is still awake and staring. Now this could be due to over-excitment or just one of those things, but thankfully my body thinks that it is 7.30pm so I am still happy to stay up with him to make up for lost time!
So here I am at almost 2am and Joshua is still refusing to fall asleep. I took him to bed around 10.30 as we were all dead on our feet after an afternoon at A&E. But immediately Joshua bounced up onto his knees, rather than lying flat, so I knew that we were in for a rocky ride. It has since then been a battle of wills involving me wrestling him down to the mattress and him reacting badly with his favourite hair pulling and pinching my arm. He finally slid out of the bottom of the bed to escape me about an hour ago.
So I made him some toast , in case he was hungry, then I have reached for the prescribed sedative, which surely, with him not having slept on Thursday night, it must work on top of Midazolam, his rescue medication. So I am now in the process of ignoring him and hoping that he gets bored and nods off. He does seem to have settled down, so my fingers are crossed. If he continues to be lively, I would say that I would like whatever he is having to keep him on the go, as I am flagging now.
We have agreed to review his respite provision in the morning, but from where I am sitting I am not optimistic that he will get there : Should he have a seizure in their care then they will call 999 and it will be back to A&E in another city. When he is sleep deprived, he is much more likely to have seizures so I am not sure how restful sending him away, late, might be. On the other hand, they are paid to stay awake and check on him throughout the night it could be our best chance of catching up on our lost sleep, topping ourselves up ready for the week ahead. Once again, it is a case of waiting to see…..
It is as if Joshua needs to remind us why we wanted/needed respite in the first place : he did not sleep at all last night and there did not seem to be any seizure activity on the horizon. He slept a lot again at school apparently and he looked settled in his armchair for a doze when I got home from work. But he was only sleeping lightly as he opened his eyes when I rustled some snacks. So once his eyes were open and he had enjoyed some dry roasted peanuts, I took him up for an early bath. He went to bed willingly enough after the bath and I thought that all was well.
But he did not sleep, he was awake and calling alternately ‘mummy’ and ‘daddy’, hoping that one of us would appear to rescue him. I was watching him from downstairs on the monitor and could see that he was staying put, so he was left to nod off. But he was still awake when I went to bed, so I kissed him goodnight and went to my own bed where I think I got an hour’s sleep before I woke with him shouting my name on the landing. So I took him back to bed and brought him up some Rice Krispies, which he was delighted about.But no sign of any sleep so, in desperation, I turned on a music DVD for him to watch and lay next to him.
My husband relieved me at 4am when he took over and I went off to grab some more winks before my early alarm, as I had to set off for work by 6.30am. Joshua was still awake then when I kissed him goodbye, and he shouted ‘no’ at me and pulled his duvet over his head! I told him that I would see him on Monday after school, which sounds a long time off. But that might give me time to catch up on lost sleep and have some fun too!
.P.S I wrote this this morning but Joshua had different ideas. We had a call from school just after midday, he had had a seizure and bumped his head, falling to the floor. He needed his emergency medicine and an ambulance had been called. We rushed to school, just in time to join him being wheeled out on a stretcher, with his head in a brace and him fast asleep. We went with blue light to hospital where we were taken to recuss. We are just home now, as he gradually came round and then we had to wait for his cut eyebrow to be glued back together again. What a brave lad he was, so respite is on hold…truly, life is like a box of chocolates, you never know what you are going to get!
Joshua has had a sedative prescribed to help to get him to sleep before or after seizures, and as it was the same potion that he had when he had his botox injections I thought that it was potent stuff. I was reluctant to use it until we were desperate and we reached that point the night before last. I was dispapointed to see that it did not touch Joshua’s pre-seizure restlessness and he paced around like a caged tiger all night long. The cause of the problem was a seizure which happened finally at 6am yesterday morning, followed by another less than an hour later which left him trembling and drooling for too long, and so I administered his emergency medication. This usually knocks him out, he has a sleep and then the brain re-sets.
It was my parent coffee morning yesterday so I left Joshua at home with his Dad, looking like he was about to fall asleep, and I met with a range of other Mums over coffee and cake. It felt odd being in school without him. When I got home at 1.30, I was shocked and disappointed to hear that he had not slept at all. He was still resisting sleep and as a result, his eyes were bloodshot. But at least he was settled, watching his DVDs and he gladly accepted the offer of ‘dinner’ too.
There were no more seizures all day, so I was optimistic that he would enjoy a good night’s sleep, allowing me to do the same. But although he asked for ‘bed’ just as we sat down to eat our meal, he bounced back out of his bedroom within 5 minutes, which did not bode well. He had a long bath and went to bed, but was too soon on the landing calling for his ‘daddy’ and ‘mummy’. I brought him downstairs again and he had some cereal and another dose of his sedative, feeling desperate enough now that he seemed to be heading for hsi second night awake.
It was after midnight before I got him back to bed and finally he settled down and to my surprise, and relief, he seemed to snuggle down to sleep. I sat in the armchair next to his bed listening to his slowing breathing and sighed a huge sigh of relief as around 1ish I finally got to bed myself. So 5 hours later, I am now awake and refreshed and thankfully Joshua is still asleep. Whether that is down to the sedative or his own exhaustion, who knows, but it is certainly just what he needed. Let’s hope he gets some reprieve from seizures for a while now….
I am up in the middle of the night as Joshua will not go to sleep, so perhaps a seizure is lurking. I have tried giving him cereal and toast, in case it was his empty stomach that was keeping him awake. But that did not seem to work and so I have reached for the prescribed sedative for the first time and I am waiting to see if it will be effective for him. I have been reluctant to use it, but we are reaching a point when we need its soporific qualities, even though, I have been warned that it tastes vile. As I write he is standing next to me, bouncing and high-5ing me, so the signs are not good yet. He is likely to stay awake until it is light and then he will go into a deep sleep, if his past form is anything to go by.
I am taking him into school with me this morning as it is my monthly parent coffee morning later. I will be on the premises, so if he does fit later, I will be close by. But the class staff know Joshua and his seizures well now and manage him well and they have the school nurse as back up. In the past, I have been wary of sending Joshua to school when he was having a bad spell of seizures, I would feel more comfortable keeping him at home with me, where I could monitor and cuddle him closely. But his seizures are unpredictable and I could spend an entire day staring at him, hardly leaving his side, and he could be seizure-free. It is a much better option to have confidence that school staff, who can take just as good care of him. It is not easy letting go and for me, I needed to see school staff in action for myself, before I could relax and release the reins. But that trust is a massive step and cannot be rushed, every parent will go at their own pace.
There is no sign so far that the sedative is taking effect, even though I have been ignoring him while typing, hoping that he would just give up and curl up asleep like a hiburnating bear. So we will try going back to bed now, after being downstairs for over an hour, and see if lying in the dark will help nature to take its course…wish me luck
This is the second morning in a row that Joshua has woken me. just before 3am, in an aggressive way: yesterday he yanked my hair and shouted ‘cow’ which was a rude awakening, and today he slapped me on my back, on the kidneys! Both are very effective and difficult to ignore, so here we are again : he has eaten some Weetabix with hot milk and a slice of toast and I have now resorted to Netflix. I know that I will get some relief tonight, as he will be sleeping in respite. It being the school holidays, we will take him there this afternoon.
Joshua was surprisingly lively yesterday, considering that he had been awake since 2.30am : so I had him dressed ready for his PA who was taking care for him all morning, when he arived at 8.30 which was unexpected, given his usual preference to sleep until lunchtime. I went to work, leaving her in charge. However, we met later at hospital, as Joshua had an appointment with Occupational Therapy, to review his botoxed wrist/fingers and check him over. Occasionally she has kept us waiting and this was no exception, so Joshua played his usual game of grinning at other patients in the waiting room or staff passing through, to see how many he could get a response from and his hit rate was pretty high surprisingly. Eventually the OT popped her head out to tell us that she was running late, and he was clearly thrilled to see her, which was surprising as on their first meeting, she had made him cry, so she has won him over after all. Gently she reviewed and re-moulded his splint and then we were on our way out.
On getting home, I unpacked shopping and settled him down and left him in the capable hands of his Dad. Bed was calling me and I went for a 2 hour nap, to compensate for the lack of sleep the night before and felt much better as usual. Naps are invaluable when my overnight sleep is so broken and really rather necessary. Yet Joshua did not sleep, he was delighted to see me back downstairs as I think he had forgotten that I was at home and was concerned that Dad was making his tea and in charge all night, the relief was palpable. I was sustained by my catnap so was able to stay up until bedtime. And then the pattern has continued again but tonight, any broken sleep will be someone else’s responsibility.
I got home from Scotland at 6pm and I pulled into the drive, Yorkshire Grandma was just leaving. She jumped out of the car to give me a hug and to tell me that my son was waiting to see me! He was indeed waiting, when I went indoors, he gave me a huge grin then went back to enjoying Pink Floyd on The Show – he was chuffed but it had just got to his favourite act. So I kissed and hugged him then went to read his school and respite diaries, to soak up the news programme that I had missed since Friday. As I was reading, Joshua decided that he was ready to pay me more attention and he kept calling ‘ Mummy’ across the room. My husband had made our evening meal and so I was presented with a plate of stirfry, which Joshua resented as he wanted me to take him in the bath by then. I promised him that we would bathe after pudding, but he stood at the snug door, switching the lights on and off, plunging us alternately into light and darkness as a very effective protest.
I gobbled my meal down, then obliged by taking him upstairs for a bath and then he watched Lion King in bed and we had a little snuggle, then I came downstairs leaving him to drift off. But an hour later, it seemed that he was still laying awake. I went back upstairs and snuggled in again, this time nodding off myself, until my husband woke me. We had a nightcap mug of tea together, then it was back to bed, where Joshua’s eyes were still open. I guess that the change of routine did not help him to settle to sleep and having managed three nights with nobody to snuggle in his bed, he was now waiting for some fuss and attention, which of course I was more than happy to give, having missed our bedtime sharing of a story and a cuddle.
So here we are back to our routine for another four weeks, which is when he next goes back for a ‘short break’. That April one will be shorter than most as we will be picking him up on Saturday night as we have tickets to see ELO in concert and as it was his Christmas present, he will definitely be joining us and just have one night in respite next month. That will be the last weekend of the Easter holidays, so he will have plenty of fun lined up as I have re-booked our postponed holiday from February half term, to go away from Maundy Thursday so it promises to be a good school holiday. I am a reluctant planner, for fear of events having to be cancelled, but I do enjoy looking at the calendar each day and seeing the fun things that lie ahead in the month and April does look to be jam-packed with fun!