Lucy was being difficult. She didn't want to do physio, but she needed to. Her muscles and physical development were already delayed, and we needed to keep her unused limbs moving. Without these exercises, she would have even less hope of developing any movement or strength in her legs. Sighing tiredly, I tried to engage her.

"Sweetheart, I need you to play with mummy. Come on. Do you want to play?" I kept my voice as upbeat as possible, trying to get her exited about the prospect of physio. It worked, for about 10 minutes. Laughing, I tickled her. Turning to the physio therapist beside me, I shrugged in defeat.

"I think we might need a new routine. She loves her baths. Is there anything we can do in the water?" Velci, the physio in charge of Lucy, nodded. She pulled her 'little magic diary' out, writing a note in there. That diary scarily reminded me of Marie. They both had an organisation fetish.

"We can probably get a bath chair. Especially once you go home. That would help. I'll look into it and let you know when I see you Thursday. Sound good?" Nodding, I lifted the fidgeting Lucy from her play mat. Knees bent and stomach tensed, just how Velci thought me. I didn't want to risk another lecture on safe lifting and protecting my back. I was still traumatised from the last one.

Lucy immediately latched onto my shirt, gripping the thin lapels with her shaking fists. Once upon a time I would have been embarrassed about someone being able to see my bra- but now? After people had seen me sleep, seen me half naked and even seen me break down? I couldn't care less. And they would see it all the time. No one batted an eye lid.

Velci was no different, uncaring that Lucy was flashing me to the public. In fact, she seemed more pleased than anything. This was a major improvement, Lucy gaining more motor control and movement in her hands. This was amazing, and I wouldn't halt it out of modesty.

After she left, I took Lucy back to her cot to check her nappy. She was dry. Glancing at the time, I noticed it was her medication time. Leaving Lucy in the cot, with the side up, I poked my head out the door. Luck was on my side, our nurse walking past our room right then. Seeing me, she spun and continued walking backwards. There were sheets and forms in her hands, the universal sign of 'Busy, but I'll be there soon' on the ward.

"Just trying to find someone to check the meds with me" then she was gone again. Eventually, our nurse rushed in with a tray of syringes.

"Jess, can you do me a huge favour? I need to help get a drip in, can you just shoot these down Lucy's tube?" Nodding, I moved to wash my hands and don some gloves.

"No problem, go do you you need to" she was gone in a flash, thanking me on her way out the door.

I got to work, pushing the medicines down Lucy's feeding tube and flushing them all through with some water. Lucy had no problem with it, happy when I let her get her hands on one of the plastic syringes. She struggled to hold it, tremors constantly present in her little hands, but managed to keep it. When she started trying to eat it, though, I had to take it away.

This then set off one of her tantrums, making me sigh in resignation. I had just given her one of her sleeping medications, so she would be knocking off for the night soon. She needed a lot of sleep, otherwise becoming very irritable. This many tantrums in one day told me she hadn't had enough sleep at nap time, even an hour making a massive different.

Once she dozed off, I poked my head out the door and waited for someone to come past. The student nurse who had been trailing our nurse was coming down the corridor, carrying a bottle of milk. She saw me waving, coming over. I figured she was on her way to give a parent some milk for their baby.

"After you give them the feed, can I borrow you? I just need someone to stay in the room while I grab some dinner" the poor girl looked confused, having seen Lucy with only oxegyn prongs. She was probably being told that tracky kids needed a person in the room at all times, and assumed Lucy was not one of those kids. I could understand her confusion, taking mercy on the poor girl and quickly explaining.

"Behavioural. She gets upset when I leave. It is just in case she wake and I'm not there. I just need someone to calm her down" nodding, the girl promised to be back in a few minutes. Once she was back, I grabbed my purse and phone.

"I'll be back in a few minutes. I have my phone if anyone needs me urgently" I took the stairs down, knowing they were faster. The woman at the till, in the cafeteria, saw me and smiled. Gesturing and talking with another woman, she had my meal waiting for me once I got there.

There were a few complaints from the line, as I technically cut in, handing over the exact amount of cash needed for a meal and a juice box. The woman rolled her eyes at the ones complaining, used to it by now.

"Calm down. She has a three minute time limit. If her kid notices she's gone, she literally stops breathing. She ordered hours ago" thanking her quickly, I left. Having friends all over the hospital was a benefit, especially when you had lived there so long. I practically sprinted up the stairs, glad to reach the floor we were on.

The student nurse was where I left her, assuring me nothing had happened. Thanking her, I let her go and sat down to eat my meal. I had barely managed to get started when Lucy started coughing.

Jumping up, I used some disinfectant gel and quickly slipped on some gloves. I didn't have time to wash my hands, so this was the best I could do. Within seconds, I had the suction ready and was suctioning the thick secretions from her mouth. It was the type of stuff that blocked her airways off, and there was more where it came from.

Taking advantage of Lucy being so sleepy, I grabbed a catheter and attached it to the suction tube. Slipping it down her throat, I wiggled it gently and pulled up, letting the suction begin as I started bringing it back out of her throat. Managing to get heaps, I repeated until there wasn't so much muck coming from her throat. Aside from a few coughs, Lucy was half asleep and uncaring.

Recoding it in my personal charts, I returned to my dinner- which was starting to get cold. It was still good. When I was just finishing, sucking my fruit box dry, our nurse came in with a group of other nurses. I knew all but one, a casual one. I quickly handed over, giving my recording of the that day for the nurse to transfer into the hospital charts outside our door. Once we were finished, I was told who was our nurse for the night.

It was Jenny, a nurse we had had tonnes of time. I was happy, knowing she knew Lucy well enough. I wouldn't get a full nights sleep, but I would be able to get a few extra hours. With a baby like Lucy, a few extra hours sleep was an absolute privilege.