Sleep is overrated!

I'm in the usual position, sat on the sofa infront of the tv, George lay across my lap with his back and head nestled all comfy on a pillow thats resting against the arm of the chair. He's calmly watching his govee floor lamp rainbow light show. The colours reflect on the corner of the TV screen. I sit watching match of the day as his eyelids slowly become heavy and he starts to nod off. He's so peaceful and calm its lovely to see. The thought of bed enters my mind....... but then without warning an agonising scream bellows loudly from the little man. Tears run from his eyes and his hands clench tightly. Its trapped wind! The poor little bean. We are set for a long and uncomfortable night again. The intensity and volume forces mummy from her bed at 0230 and the relay begins. It's becoming such a struggle. Sleep deprevation and fatigue well and truly setting in, we are both starting to feel nausia and sickness. We have been enduring this for almost a week. "Expect good days and bad days" we were told. Where are the good days we wonder. As our batteries slowly drain our focus turns to the hospice respite.... "just over a week to survive" we say to each other. We feel self pity but we feel so so sorry for poor George. You wouldn't wish it on an enemy. He must be absolutely sick of life. His face paints a picture of pure exhaustion and his body and hair is wet with sweat. I for one don't think I could put up with what he does. It's heartbreaking as a parent watching helplessly on. This is not what we signed up for. The day was mostly uneventful. Danny still grafting like a trooper in the garden, respite in from 0900-1300 to watch George sleep. I had a couple hours in bed and poor old mummy was working away. George had the pleasure of meeting who maybe his new nextdoor neighbour. Someone who had donated to the cause and both Natalie and I know which is nice. Mummy finishes work at tea time, all excited for cuddles with her little boy. I get the formula ready, aspirate him and set up the pump. His feeding begins and all is calm. Mummy and son having cuddles but it doesn't last long. Within 20 minutes, George is crying unconsolably down her ear and doesn't relent for almost 2 hours straight. It's like she's facing the interrogation phase of SAS are you tough enough. In the meantime I received an email regarding an all expenses paid respite stay in London provided by work. We are pleased to confirm your respite break...... excellent we think and excitedly read on, but as we read further it states, "unfortunately the dates you requested are unavailable"...... nightmare! Things aren't as simple as just chosing a date and booking something anymore. we are reliant on work approving leave, hospice availability and the all important pet sitters. We have chosen new dates and will check with the hospice tomorrow. Finally we have something to look forward to, but still not a family adventure :( that day will come. We have also made contact with the peeps HIE charity tonight. Partly because it is HIE awareness day today but also for the support they can offer. Now is the time to start asking. We live in hope that tomorrow will be the good day we all long for, which is kicking off with a meeting with the hospice. I really hope it's not same time same place tomorrow but I fear it's not going to improve until we have been to the specialist next week. Thank you for today's kind donations.