Hello everyone!

It’s been such a long time since my last blog, almost 3 months.

Since my last blog, we haven’t done a lot due to the lockdown. Whilst I do not have one of the medical conditions that make Covid 19 more likely or more severe, I do need to be slightly more careful than the average person because if I were to contract  the virus and develop  respiratory symptoms, I would probably find it them more difficult to shake off because I don’t stand up and therefore do not take as bigger breaths as most other people.

I have therefore just been at home with Arthur and Louie. We have been on a few nice walks and it has  been lovely having so much quality time togethet. However, Arthur is at a tough age to be stuck in the house. He is now shuffling around everywhere and pulling up on furniture so won’t just sit still. On the other hand he is too young to do colouring or puzzles so moves from one toy to another quite quickly. I have bought him quite a few new toys to stimulate him and my lovely Mummy and Daddy bought him a trike which Louie will finish building tomorrow.

You will all remember that the doctors were following Arthur up due to some enlargement of the ventricles in his brain. We have had one appointment in the hospital and one on the phone since I last blogged and I am pleased to say that they are very happy with his progress. He will hopefully be discharged on or around his first birthday. There are no signs of developmental delay and he is exceeding their expectations based on what the average 8 month old does.  It could have been a misinterpreted ultrasound or perhaps that he was a bit squashed towards the end of my pregnancy which would explain why the issue was not identified until a scan at 32 weeks.

As Arthur is getting stronger and is now sitting, pushing up, and weight hating, I am now able to lift him in and out of the bath, get him on and off the floor whilst in my chair, and carry him independently on and off the stair lift. I do everything very slowly and always make sure we are safe. He is always very still and patient which helps.

I had my new wheelchair delivered. It looks better than I expected but needs A LOT of adjustment and I’m not sure it is right for me. It is heavier and just generally not as good as my current wheelchair that I purchased privately. I am going to go to an appointment after lockdown to have some changes made but I may need to look at approaching charities to obtain funding to upgrade the chair or buy another that meets my needs. It is important it is nice and light so I can wheel me and Arthur around and so it fits in my carers’ cars. I will get there. It is just frustrating that wheelchairs are limited on the NHS.

We are trying to prepare the house for Arthur being on the move but this is tricky because I need to have a stair gate custom built to accommodate my stair lift. Only trouble is that the charity building it are closed due to lockdown. Luckily we have doors downstairs to shut him out of the hallway and he will have to be kept off the landing upstairs until the gate is built.

We are looking at moving house later this year. We want to move to a nicer area. It would also be nice to find a house we could see ourselves living in long term. I would like a downstairs toilet as at the minute it’s annoying going up and down stairs and either taking Arthur with me or worrying about leaving him downstairs alone if Louie is out as it takes me longer due to the stair lift. Potty training will also be easier with a downstairs loo. I would also like a more accessible kitchen. This means it needs to be bigger to allow more room for a unit for me to chop things on and use a kettle at my height.

I have been doing lots of cooking for Arthur. I like him to have nice home cooked food. Today he  had tuna and sweet potato patties which he loved. As my worktops are high, my carers assist me.

In order to minimise the risk of us catching the virus, my carers are doing reduced hours. They usually do 20 hours per week but are now doing 14. Louie is at home but still working so I still need the support of fetching and carrying everything.

I am struggling with my leg spasms a lot due to not horse riding. My legd hadn’t twitched in months but are now twitching several tunes a day and are very stiff. I cannot wait to get back in the saddle. The spasms make moving around so much more difficult.

Anyway, take cate everyone. Hopefully we will be out of this soon. I want to get a few more weeks of baby group in before going back to work.

Lots of love.


Xxx