Hi everyone

I hope you are all well.

I thought now might be a good time to do a blog as Louie has now been back at work for 2 weeks so I have started to get into a ‘sort of’ routine. A few people have asked how I do certain tasks for Arthur now Louie is out 10 hours a day and given that I have just 4 hours of care a day. I thought I would blog about my daily routine so that people can understand how I do certain things that may seem impossible to those who haven’t spent their lives having to think carefully about doing the simplest of tasks.

So before we go to bed each night Louie makes sure I have sterilised bottles ready for the night so I don’t have to go downstairs on the lift. I have the milk machine upstairs on the landing. However, Arthur has now mastered breastfeeding and this is what he does most nights now so I don’t have to get up. I also pump out milk before I go to bed so he can have that if he needs a little top up. So it’s rare I have to get up and make a formula bottle. I do all of the night feeds now Louie is at work and I keep nappies under Arthur’s crib so I can change him without going to the nursery. It all works well and he only really wakes up twice a night for a feed.

Louie goes to work at 7.45 and we are usually still asleep. I stay upstairs until 10ish when the Carer comes. I just chill with Arthur in bed or if we are awake, I take him to the nursery to get him dressed. So one question people have asked is how I do this?  It’s a multi-step process. Arthur is usually in my bed at this point. I pick him up, move him down the bed by stretching out my arms whilst holding him. I reach as far as I can and put him down on the bed as near to the end as possible. I then shuffle down the bed myself, pick him up again, put him further down the bed, and shuffle towards him until we reach the end of the bed. My chair is at the end as the crib is next to the head of the bed. I then climb Into my chair (trying not to squash Elsa the cat who is usually in bed with us). Once in my chair, I pick up Arthur from the bed. Now he is stronger and able to hold  his head he sits on my lap with his back to me. I hold him securely with one hand and wheel with the other hand, pulling on door frames and walls if necessary. We eventually get to the nursery and I get him undressed. I go to the bathroom and fill the top and tail bowl to give him a wash. I carry it back to his room on my lap and try not to spill it whilst I am wheeling myself. I give him a wash before dressing him. If he needs a bath, I wait for the Carer. I get in the bath myself and they pass him to me. This is much safer than me leaning over the bath.

We then either go out to the shops or the stables. We go in the Carer’s car or a taxi. We went to baby group for the first time this week. This involves sitting on the floor. I am lucky to be able to climb out of my chair to the floor. Arthur sits in his car seat whilst I do this. I then pick him up from his seat and we participate in the group. He loved it so much. There is a break between activities and we are asked to move around the room to use the toys such as ball pit and baby mats. Like the other mums I can move round on my bottom but, unlike the other Mums, I can’t use my legs to move  so have to use my arms to move on the floor. My Carer has to carry Arthur then pass him back to me. At the end of the class I put Arthur in his seat on the floor then pull myself up into my chair. The class was really great. The lady running it offered to get me a table so icdidntvhavevtovgetvoncthrvfloor but I didn’t want this ad I wanted to be like the other Mums and for Arthur to be next to the other babies on the floor.

We then go home and the Carer leaves at 2. Wr stay downstairs on the sofa. I have the crib on which to change Arthur without going upstairs. I can use the sling to carry him upstairs if necessary but it’s just easier to stay downstairs. If I need the loo I go up on my lift. Arthur hates this because it takes a few minutes. Not as quick as running upstairs. Oh well, he can’t have Mummy all the time.

Louie comes home at 6ish. He cooks our dinner and he watches Arthur whilst I wash up. He then takes Arthur upstairs and he either has a bath with Louie or on his little seat. I then dry him on my lap and change him in his nursery. Louie then puts him in bed with me and I feed him before leaning over to put him on his crib.

We went to Plymouth for the first time a couple of weeks ago. Arthur met his great grandparents which was lovely. Mum and Dad’s house no longer has a stair lift so I climb up. Mum then put the Moses basket next to the bed so I could change and feed Arthur without getting out of bed. I then stayed downstairs the next day and friends came to visit which was nice. The car was very full going home as we had my chair, Arthur’s stuff, and Louie’s golf clubs and trolley. We got it all to fit though. We will do it all again at Christmas, this time with Elsa the cat too.

My next adventure is going to be getting the train home to Plymouth with Arthur one week. I will get Louie to take us to the station, Mum and Dad have a bed for Arthur and I can buy nappies, wipes, and other day to day stuff there. So it will only be our clothes and a change bag really. The assistance staff will get me on the train and it’s a straight train. There is a disabled toilet and I have tested the change unit so I know I can reach it. I will just have Arthur in a sling and we can just enjoy the trip. The station staff will then get us off using the ramp the other end. I think it will be good for me to go on a journey with him independently.

Our car failed it’s MOT yesterday so we have a hire car. We weren’t allowed to drive our car home so the Motability Scheme got us a taxi. Trying to get a taxi and hire car to fit a chair and car seat isn’t easy and I had to make about 20 phone calls. We got there in the end. The people I spoke to were surprised to hear I needed a car for a car seat and a wheelchair.

Anyway, I need to quickly get changed before Arthur wakes up.

Take care all. Xxx

Hey All,

I hope you are all well and enjoying the weekend.

Just a quick blog to keep you all updated on Arthur’s progress. He had his six week check about 2 weeks ago and all is well. He has put on lots of weight and he was a good boy during his vaccinations last Monday. They did make him feel a bit unwell so he was upset during the night but this is normal. We just aren’t used to him being upset as he’s normally quite easy going. He will have his next injections next month.

We went to the Cotswolds for our first night away this week. It took a bit of planning and the car was full with all his stuff and my wheelchair. The hotel said they had never had a wheelchair user who also needed a travel cot before.  They upgraded us as the room we booked would have been too cramped for my chair and a cot.  It turned out the travel cot didn’t work for us as I couldn’t lean down to floor level to lift him out in the night. Luckily Louie’s parents bought a Moses basket which was the same height as the bed. We will use this in future and when he grows out of it we will take his next to me crib.

I pumped out lots of milk because we didn’t want to take the Perfect Prep machine and lifting a heavy kettle is dangerous as it could fall on my lap. Arthur is getting a lot better at breastfeeding and he does more and more each day. I still like to pump though so I know what he’s getting.

Carrying cases to and from the car and hotel room was a bit more time consuming because we had extra bags for Arthur and his basket. Obviously I can’t help and Louie has to push me so he had to do a few trips.  We managed and we had a lovely break away.

Arthur is so much more alert now and is interested in his surroundings. His grip and legs are so strong. All of these changes are reassuring for me as they suggest that the abnormalities on his brain scans were  just anomalies that will not cause any issues.

People have commented that he looks bigger now. This is partly because he is long and my body is short so in photos he looks bigger. I’m still managing to lift him easily and I put him in the sling whilst I’m going round tidying etc.

One issue that may arise when Arthur gets heavier is lifting him from his bouncy chair. It is on the floor and although I can reach down at the moment and pick him up, this will soon not be safe. I wish there was a bouncy seat on a stand. Lifting from the play mat up into my chair is already too difficult so I get on the floor to play with him but I then have to lift him onto the sofa, get in my chair from the floor, and then pick him up from the sofa. I just have to find ways around things and I will have to think again when he starts moving.  The bouncy seat is just more difficult because it’s not floor level but is low down.

Louie has one more week of paternity leave so we are popping to Plymouth to see friends and family. I am looking forward to introducing Arthur to my home town.

When Louie goes back to work I will start baby sensory and baby massage classes. I have been told I am the first Mum in a wheelchair to attend. Luckily I can climb on the floor to do the massage. I am excited to meet other Mums in my local area. My Carer’s will drive me there so at least I will have someone with me to help me if I can’t reach the changing unit or pick Arthur up from the floor.

I am taking part in a horse riding competition in November so I’m spending my riding lessons practising. It’s my little bit of me time in the week.

I will be in touch with you all soon.

Take care. Xxx