Hello All,
I hope you are all keeping safe and well.
I know it has been a few months since my last blog so I wanted to update you on how my little family and I have been getting on during these strange times.
Can you believe that Arthur is 1 in 18 days?! I have been reflecting a lot on this time last year and how different life was but more importantly how lucky I was to have such a straight forward birth and the best little boy.
Arthur is well and truly on the move now, bombing around everywhere and can even climb the stairs. Many people said to me that when he started moving, it would get harder for me due to being unable to move as quickly as an able bodied person. In some ways, it is harder in that he is into everything so I can’t leave him unsupervised. However, he does understand the word no and when he is touching something he shouldn’t, I say no and he pretends to cry but does stop.
His increased mobility and strength also helps me a lot to move us around. There is now nothing I can’t do for him. As I said in my last blog, giving him a bath gets easier everyday. I just lower him in onto his feet and guide him down slowly. I lean in to wash him and then when it’s time to get out, he stands up and I just pull him out. He is taller than average which again means he is closer to me when standing up so less far for me to reach.
I am also finding getting him downstairs much easier. I move the stair lift round at the top and climb onto the seat. Arthur loves the lift so crawls straight over, stands up, turns around and I pull him onto my lap. We then belt up and off we go. He claps all the way down. At the bottle I lower him off onto the floor. We still need to get a stair gate but are waiting for a charity to assist us with making one that fits with my lift.
Normally, Louie gets Arthur in and out of the car but I have realised that I can even do this now. I wheek him out to the car and put him in on my seat behind the driver and he shuffles along towards his seat. I climb in and lift him into his seat. I struggle with the straps as I am then at a funny angle and you have to push down firmly so Louie or a Carer does this. I then lift him out when we arrive at wherever we are going and pass him out to Louie.
At the moment when we are out and about Arthur is still quite happy to ride on my lap. I went shopping twice last week for clothes and he sat on my lap for 4 hours smiling at all the shop assistants. It may get harder when he wants to explore but I will get reins. Louie and I have taken Arthur on a few walks to National Trust parks. They often have steps to access some parts of the grounds. Normally, Louie bounces me up and down without help but with Arthur on my lap this isn’t as safe and the chair is heavier. We would normally ask for help but due to social distancing, this isn’t an option so we are having to check access a bit more before we go places. Most places are ok nowadays. Once Arthur is on reins, he will be able to walk next to us. I will miss having him on my lap.
We stayed at Mum and Dad’s last week which was lovely. It was great for Arthur to spend time with my family and, in particular, his 3 year old cousin Grace. They had a lot of fun. We still have issues with travel cots. I can get Arthur out now that he stands up and reaches for me but putting him down without waking him is more difficult. He is always more unsettled in an unfamiliar place so sometimes he just wants his mummy cuddle. I spent ages looking for an height adjustable cot and couldn’t find one. I was going to buy a piece of foam to go in the cot at Mum and Dad’s house but this would them be another thing to carry if we go away. I was about to give up and then saw three online. I think I was over complicating my search. They are more expensive than normal travel cots and they aren’t perfect as the raised position is more for younger babies. However, they are better than normal travel cots. I just won’t be able to leave Arthur awake in the cot as he could climb out due to being higher up. We have a video monitor which helps so I can keep an eye on him even when I’m not in the room.
The crib/snooze pod downstairs that I use for nap time and changing is now getting too small. I will need to take Arthur up to his cot for naps soon and change him on the floor. I’m lucky I can get in and out of my chair easily. I spend half my life on the floor lately, usually cleaning up food that has been thrown on the floor.
I can’t find a high chair that I can use easily independently apart from a portable one that attaches to a chair. It’s ok for now but it was only cheap and the table part is a nightmare to get on and off. I need something the same height or lower than my chair so I can lift Arthur in and out. I also need to be able to get nice and close so I can feed him without my back aching. All high chairs seem to be too high or the legs prevent me getting in close. The one I have will do for now but I don’t think it will last long.
My body is very stiff at the moment. The effects of 5 months without riding are really kicking in now. I so hope Avon Riding Centre opens soon. The charity is really struggling due to restricted funds during lockdown. If anyone can spare a few pounds, I would be so grateful.
My maternity leave officially ended in June but I was placed on Furlough and am due back to work in September. I do have a lot of holiday to use though so it will be nearer to October before I go back. I am so glad as ideally I didn’t want to put Arthur onto nursery at 9 months. Although this virus has caused so much sadness and disruption for so many and has meant we lost time at baby groups, I try and see the positives which are that I have had more bonding time with Arthur. Also, if I had got pregnant this year, I would have been very high risk due to my disability making me slightly more likely to become poorly with the virus especially if pregnant.
Arthur starts nursery when I go back to work, Louie will be dropping him in the morning and I will go with a Carer and collect him. He is only going 2.5 days a week so it will ease him jn gently.
We are busy planning for his birthday, Mum and Dad are coming up the weekend before and then on the actual day Louie and I will take him to a safari park. A few weeks later we will have his christening and a big family celebration.
We will be sure to share pictures of the special few weeks ahead.
Lots of love to you all. Xxx
Saturday, July 18, 2020
Thursday, April 30, 2020
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
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
Friday, February 14, 2020
Happy Valentines Day Everyone.
It’s our 7th Valentines Day together and our first as a family of 4 (3 humans 1 cat). It has been a quiet evening. We bought the M&S dine in for 2 and lit some candles. I got a rose and some chocolate! Arthur sat next to us in his highchair. Shame we all got covered in mashed up food (weaning has now well and truly started) but I wouldn’t have it any other way.
So Arthur is SIX months now and has really changed recently. I read that babies normally only sit for a few seconds at this age but he sits independently for long periods now. He only falls backwards or sideways when he is being nosey and looking around at something or someone. I honestly believe that this early sitting is due to the fact he spends so long on my lap. Whilst I always hold onto him, he probably isn’t as supported as being in a pram so his muscles will have strengthened. The consultant did say this may happen. His legs are also very strong now, probably due to his obsession with the Jumperoo.
Speaking of the Jumperoo, you may remember I said I couldn’t lift him in and out of it. I am pleased to say that I now can. Now Arthur is more uptight, I can sit him on the side and just steady him whilst I lean really far forward and put his feet through the holes before lowering him down. I then just pull him up with my hands under his arms to get him out. He is over a stone now but I can still manage.
Another big change now Arthur is stronger is that I can safely lift him on and off the play mat without getting out of my wheelchair. I hold him under his arms, lean forward, sit him on the floor in a sitting position and then put my hand under his head whilst I lay him down. I then get on the floor with him. When we are all done playing I climb into my chair from the floor, just using my arms, and then lean down, put him into a sitting position, put my hands under his arms and lift him up. Thank goodness for long arms. He even pushes through his feet now bless him which is a great help.
The third update is that the long search for a suitable highchair is over. I was struggling to find one that was the right height because height adjustable ones were either too high or if I put them lower to get him in they were then too low to feed him without bending down. So in the end we bought a portable one that goes on our kitchen chair. It’s not perfect as, like with a normal highchair, the chair legs get in the way of my wheels so I can’t get as close as I’d like to feed but, again, I just about manage with my long arms.
We want Arthur to have as much home cooked food as possible and only aim to uses ready made food when out about. I believe that home cooked food is important and my family’s cooking certainly helped me maintain my strength when I was poorly as a baby. Cooking in my kitchen indecently is tricky for me. The work surfaces are too high and so is the hop. I therefore have to give instructions to my Carer’s and they help me to batch cook, blend, and freeze meals for Arthur. Louie cooks our tea when he gets home from work but it’s usually a bit adventurous for Arthur at this stage. When we buy our forever home in a year or two, we will look to make adaptions so I can be more indecent in the kitchen for Arthur but we do not qualify for assistance from the council so we have decided there is no point adapting this house too much as we won’t be here mint and able bodied people may be put off a house with adaptions.
Arthur is now on the waiting list for a nursery. Normally nowadays babies are put on the waiting list when a mum is pregnant but because we didn’t know when Arthur would be born and therefore when I would go back to work, I couldn’t do this. When I was ready to put him on the list, 4 of the 6 nurseries I approached were not wheelchair accessible. They had either steps to get into the building or the babies room was upstairs. I want to be able to go and collect Arthur and for him to be able to run straight to me and not have to be taken to the car to meet me. I am pleased that I have now found a lovely place and the staff have been so accommodating. Attending parents evening and Christmas plays will not be an issue.
I will be going back to work 3 days a week and the plan is that Louie will take Arthur to nursery and I will pick him up with my Carer. The issue is that the care agency I used to have before I had Arthur cannot support me to be a parent due to insurance and my current Carer’s are currently only with me for 4 hours in the middle of the days and they do not start with any customers until 9am. This means I need to work out who will help me get to the station in the morning and pick me up in the evening because Louie can’t be in 3 places at once. It’s all being looked into though and there will be a way around it I am sure.
We start swimming lessons next week. We have arranged for a mat to be put next to the pool which I will climb onto from my chair whilst my Carer holds Arthur. I will climb into the pool and then take Arthur so I can be like the other Mums in the class. I will wear a foam tube (sometimes called a woggle) to keep me a float. Staying above water with no use of your legs is tough and I will need my arms to hold Arthur who will also wearing a float. The lesson will be in the baby pool to begin with anyway so that will help as I will be able to sit on the floor of the pool. After the lesson, I will then use the bars next to the steps into the pool to pull myself out onto the mat, dry myself, then climb back into my chair. If only all pools had hoists. Never mind, I can’t have Arthur missing out on swimming!
I’ve been to soft play twice in 2 weeks. Lots of crawling the first time from each piece of equipment but the second place was too big for crawling so I took my chair in and transferred onto each of thr pieces of equipment which included a mini round about and water bed thing. Arthur sat on my lap on each of the moving apparatus. I will never be able to carry him up steps to use slides but I will leave that for weekends for Daddy or for when he’s older.
We were in the local paper last week and all I can say is watch this space for more from us over the next few weeks.
I am 30 in three weeks and we are going away to a nice hotel for 2 nights. Good practice for our holiday to Spain in April
I will update you after my birthday!
Lots of love zxx
It’s our 7th Valentines Day together and our first as a family of 4 (3 humans 1 cat). It has been a quiet evening. We bought the M&S dine in for 2 and lit some candles. I got a rose and some chocolate! Arthur sat next to us in his highchair. Shame we all got covered in mashed up food (weaning has now well and truly started) but I wouldn’t have it any other way.
So Arthur is SIX months now and has really changed recently. I read that babies normally only sit for a few seconds at this age but he sits independently for long periods now. He only falls backwards or sideways when he is being nosey and looking around at something or someone. I honestly believe that this early sitting is due to the fact he spends so long on my lap. Whilst I always hold onto him, he probably isn’t as supported as being in a pram so his muscles will have strengthened. The consultant did say this may happen. His legs are also very strong now, probably due to his obsession with the Jumperoo.
Speaking of the Jumperoo, you may remember I said I couldn’t lift him in and out of it. I am pleased to say that I now can. Now Arthur is more uptight, I can sit him on the side and just steady him whilst I lean really far forward and put his feet through the holes before lowering him down. I then just pull him up with my hands under his arms to get him out. He is over a stone now but I can still manage.
Another big change now Arthur is stronger is that I can safely lift him on and off the play mat without getting out of my wheelchair. I hold him under his arms, lean forward, sit him on the floor in a sitting position and then put my hand under his head whilst I lay him down. I then get on the floor with him. When we are all done playing I climb into my chair from the floor, just using my arms, and then lean down, put him into a sitting position, put my hands under his arms and lift him up. Thank goodness for long arms. He even pushes through his feet now bless him which is a great help.
The third update is that the long search for a suitable highchair is over. I was struggling to find one that was the right height because height adjustable ones were either too high or if I put them lower to get him in they were then too low to feed him without bending down. So in the end we bought a portable one that goes on our kitchen chair. It’s not perfect as, like with a normal highchair, the chair legs get in the way of my wheels so I can’t get as close as I’d like to feed but, again, I just about manage with my long arms.
We want Arthur to have as much home cooked food as possible and only aim to uses ready made food when out about. I believe that home cooked food is important and my family’s cooking certainly helped me maintain my strength when I was poorly as a baby. Cooking in my kitchen indecently is tricky for me. The work surfaces are too high and so is the hop. I therefore have to give instructions to my Carer’s and they help me to batch cook, blend, and freeze meals for Arthur. Louie cooks our tea when he gets home from work but it’s usually a bit adventurous for Arthur at this stage. When we buy our forever home in a year or two, we will look to make adaptions so I can be more indecent in the kitchen for Arthur but we do not qualify for assistance from the council so we have decided there is no point adapting this house too much as we won’t be here mint and able bodied people may be put off a house with adaptions.
Arthur is now on the waiting list for a nursery. Normally nowadays babies are put on the waiting list when a mum is pregnant but because we didn’t know when Arthur would be born and therefore when I would go back to work, I couldn’t do this. When I was ready to put him on the list, 4 of the 6 nurseries I approached were not wheelchair accessible. They had either steps to get into the building or the babies room was upstairs. I want to be able to go and collect Arthur and for him to be able to run straight to me and not have to be taken to the car to meet me. I am pleased that I have now found a lovely place and the staff have been so accommodating. Attending parents evening and Christmas plays will not be an issue.
I will be going back to work 3 days a week and the plan is that Louie will take Arthur to nursery and I will pick him up with my Carer. The issue is that the care agency I used to have before I had Arthur cannot support me to be a parent due to insurance and my current Carer’s are currently only with me for 4 hours in the middle of the days and they do not start with any customers until 9am. This means I need to work out who will help me get to the station in the morning and pick me up in the evening because Louie can’t be in 3 places at once. It’s all being looked into though and there will be a way around it I am sure.
We start swimming lessons next week. We have arranged for a mat to be put next to the pool which I will climb onto from my chair whilst my Carer holds Arthur. I will climb into the pool and then take Arthur so I can be like the other Mums in the class. I will wear a foam tube (sometimes called a woggle) to keep me a float. Staying above water with no use of your legs is tough and I will need my arms to hold Arthur who will also wearing a float. The lesson will be in the baby pool to begin with anyway so that will help as I will be able to sit on the floor of the pool. After the lesson, I will then use the bars next to the steps into the pool to pull myself out onto the mat, dry myself, then climb back into my chair. If only all pools had hoists. Never mind, I can’t have Arthur missing out on swimming!
I’ve been to soft play twice in 2 weeks. Lots of crawling the first time from each piece of equipment but the second place was too big for crawling so I took my chair in and transferred onto each of thr pieces of equipment which included a mini round about and water bed thing. Arthur sat on my lap on each of the moving apparatus. I will never be able to carry him up steps to use slides but I will leave that for weekends for Daddy or for when he’s older.
We were in the local paper last week and all I can say is watch this space for more from us over the next few weeks.
I am 30 in three weeks and we are going away to a nice hotel for 2 nights. Good practice for our holiday to Spain in April
I will update you after my birthday!
Lots of love zxx
Tuesday, January 7, 2020
Afternoon friends and a happy new year to you all.
It’s been a sad start to my new year as my amazing Grandad sadly passed away on 1st January 2020. Most people are close to their Grandparents but I was exceptionally close to my Grandad. Due to my disability, I had countless appointments as a child with approximately 8 specialists on a regular basis, plus weekly physio and hydrotherapy. Mum had 3 of us under 4 and Dad was away a lot in the navy. Grandad used to transport me here there and everywhere. He would talk to me about varying topics in the car and I have fond memories of him pushing me in my chair with me holding a dog lead in each hand. He joked the dogs were pulling me up the hill
Grandad, like all of my family, always pushed me to be as independent as possible. I remember how I used to pull myself up the stairs in his and Grandma’s house and he would walk up behind me saying not pain no gain’.
I therefore thought now was a good time to put together the video referred to in my most recent blog showing how Arthur and I manage independently. I must re-iterate i have no use of my legs and a curved spine so the movements I do come from my arms and stomach muscles.
I hope this video raises further awareness of the fact that although some tasks are a struggle, there’s almost always a way to get things done.
Take care all xxx
It’s been a sad start to my new year as my amazing Grandad sadly passed away on 1st January 2020. Most people are close to their Grandparents but I was exceptionally close to my Grandad. Due to my disability, I had countless appointments as a child with approximately 8 specialists on a regular basis, plus weekly physio and hydrotherapy. Mum had 3 of us under 4 and Dad was away a lot in the navy. Grandad used to transport me here there and everywhere. He would talk to me about varying topics in the car and I have fond memories of him pushing me in my chair with me holding a dog lead in each hand. He joked the dogs were pulling me up the hill
Grandad, like all of my family, always pushed me to be as independent as possible. I remember how I used to pull myself up the stairs in his and Grandma’s house and he would walk up behind me saying not pain no gain’.
I therefore thought now was a good time to put together the video referred to in my most recent blog showing how Arthur and I manage independently. I must re-iterate i have no use of my legs and a curved spine so the movements I do come from my arms and stomach muscles.
I hope this video raises further awareness of the fact that although some tasks are a struggle, there’s almost always a way to get things done.
Take care all xxx
Subscribe to:
Posts (Atom)