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
Wednesday, December 18, 2019
Hey guys!
I wanted to do a quick blog this week as it was one year ago tomorrow (19th December 2018) that we found out I was pregnant. Whilst we kept it a secret from everyone except close family and friends until the 12 week scan in February, the planning began the day I took the test because of my pre-existing medical conditions and the medications I was taking.
I remember spending this week a year ago on the phone to numerous medical professionals trying to ascertain when I needed to be seen and by whom. I didn’t fit into any of the categories for early review by an obstetrician. It was also tricky as none of the doctors could definitively say whether my medication was safe in pregnancy due to a lack of research. I stopped it the day I found out and I am pleased that, thanks to regular horse riding, I have not needed to re-start the muscle relaxant.
Many people doubted whether I would cope with a baby. I must admit I wasn’t worried about actually managing as a mummy, I was more concerned about the pregnancy and birth. I just didn’t think my body would manage carrying a baby to full term and giving birth without any medical intervention. Well, I proved myself wrong by carrying Arthur to what is classed as full term and by pushing him out independently in just 25 minutes. It’s amazing what even a body damaged by cancer and cancer treatment can do. I hope that any doubts people may have had about me being a parent have also disappeared thanks to my regular blogs and Facebook updates showing how I am managing with just 4 hours of carer support each day in the week. The Carer’s do not do any changing, washing, or feeding for Arthur. I do all of these tasks. They assist me with household tasks such as cleaning, washing, and getting out and about. At weekends Louie is home and, from speaking to friends with children, it seems he doesn’t do anything extra for Arthur that any other Dad wouldn’t do. So all in all I think I’m doing well really and the main thing is Arthur is a happy boy.
I still can’t believe that one year down the line from finding out I had defied the odds and become the first neuroblastoma survivor to fall pregnant naturally, I’m sat here in bed with my gorgeous baby sitting on my lap, asleep with his head on my chest. He loves this position. It looks so uncomfortable but it never fails to settle him. Most babies like being walked around but he’s not fussed by this, he much prefers the notion of the wheelchair.
So since I last blogged we had Arthur’s kidney scan results. He does have a duplex kidney and one is smaller than the other. However, they both seem to be working properly. The consultant suggested doing a scan to assess if the smaller kidney is functioning less when compared with the larger kidney. This scan involves injecting dye into the vein and doing an MRI scan. I raised concern about this with the consultant as I want to avoid any unnecessary procedures for him. I don’t want him constantly being poked and prodded like I was as a child. I asked the consultant what the results may show and what each possible result would result in treatment wise. She said that unless Arthur was portraying any symptoms, even if the smaller kidney wasn’t working so well, no intervention would be required. I therefore voiced concern that the scan may not be necessary at this stage and she could understand my views. He is therefore going to have his kidneys scanned with ultrasound next year instead as this is non-invasive. My other reason for wanting to avoid radioactive dye unless required is that radiation can be associated with neuroblastoma, the cancer I had as a child. Whilst Arthur’s risk is no higher than any other baby’s risk, I still want to keep it minimal. Ifvhecdidvdevelopvsymptoms, I would of course follow any medical advice given but at the moment the consultant agrees the scan is not necessary and is just done as a way to be fully informed. She has reassured me that both of his kidneys are working well and she is not concerned. After all, if it hadn’t been for my disability and the need for extra growths cans, we would never have known about the anomalies that are believed to be present in 1 percent of the population.
Also since my last blog, I travelled to Plymouth and back on the train with Arthur. Apart from a poo explosion just as Louie dropped us off and having to change Arthur across 2 seats due to not being able to reach the changing unit and apart from a track defect meaning we had to get off a stop earlier than planned on the way back and be put in a taxi, it went well. As ever, Arthur was a good boy and didn’t cry at all. He enjoyed seeing family and friends and I now feel we can go anywhere on the train.
We are spending Christmas in Plymouth with my family. Elsa our cat will be coming too. The car will be quite full but there’s nowhere else I’d want to spend Arthur’s first Christmas.
We’ve finished baby sensory until next term and we have just completed a baby massage course which was useful. I hope to take Arthur to a music class next term
I am thinking of doing future blogs as videos. This will make it easier to fully explain myself and Arthur can take part too. If anyone has any questions or issue they would like me to discuss, please just comment below.
Have a wonderful Christmas all. Arthur’s Christmas Day outfit came today (thanks Grandma) so watch out for Facebook photos.
Lots of love to you all. Xxx
I wanted to do a quick blog this week as it was one year ago tomorrow (19th December 2018) that we found out I was pregnant. Whilst we kept it a secret from everyone except close family and friends until the 12 week scan in February, the planning began the day I took the test because of my pre-existing medical conditions and the medications I was taking.
I remember spending this week a year ago on the phone to numerous medical professionals trying to ascertain when I needed to be seen and by whom. I didn’t fit into any of the categories for early review by an obstetrician. It was also tricky as none of the doctors could definitively say whether my medication was safe in pregnancy due to a lack of research. I stopped it the day I found out and I am pleased that, thanks to regular horse riding, I have not needed to re-start the muscle relaxant.
Many people doubted whether I would cope with a baby. I must admit I wasn’t worried about actually managing as a mummy, I was more concerned about the pregnancy and birth. I just didn’t think my body would manage carrying a baby to full term and giving birth without any medical intervention. Well, I proved myself wrong by carrying Arthur to what is classed as full term and by pushing him out independently in just 25 minutes. It’s amazing what even a body damaged by cancer and cancer treatment can do. I hope that any doubts people may have had about me being a parent have also disappeared thanks to my regular blogs and Facebook updates showing how I am managing with just 4 hours of carer support each day in the week. The Carer’s do not do any changing, washing, or feeding for Arthur. I do all of these tasks. They assist me with household tasks such as cleaning, washing, and getting out and about. At weekends Louie is home and, from speaking to friends with children, it seems he doesn’t do anything extra for Arthur that any other Dad wouldn’t do. So all in all I think I’m doing well really and the main thing is Arthur is a happy boy.
I still can’t believe that one year down the line from finding out I had defied the odds and become the first neuroblastoma survivor to fall pregnant naturally, I’m sat here in bed with my gorgeous baby sitting on my lap, asleep with his head on my chest. He loves this position. It looks so uncomfortable but it never fails to settle him. Most babies like being walked around but he’s not fussed by this, he much prefers the notion of the wheelchair.
So since I last blogged we had Arthur’s kidney scan results. He does have a duplex kidney and one is smaller than the other. However, they both seem to be working properly. The consultant suggested doing a scan to assess if the smaller kidney is functioning less when compared with the larger kidney. This scan involves injecting dye into the vein and doing an MRI scan. I raised concern about this with the consultant as I want to avoid any unnecessary procedures for him. I don’t want him constantly being poked and prodded like I was as a child. I asked the consultant what the results may show and what each possible result would result in treatment wise. She said that unless Arthur was portraying any symptoms, even if the smaller kidney wasn’t working so well, no intervention would be required. I therefore voiced concern that the scan may not be necessary at this stage and she could understand my views. He is therefore going to have his kidneys scanned with ultrasound next year instead as this is non-invasive. My other reason for wanting to avoid radioactive dye unless required is that radiation can be associated with neuroblastoma, the cancer I had as a child. Whilst Arthur’s risk is no higher than any other baby’s risk, I still want to keep it minimal. Ifvhecdidvdevelopvsymptoms, I would of course follow any medical advice given but at the moment the consultant agrees the scan is not necessary and is just done as a way to be fully informed. She has reassured me that both of his kidneys are working well and she is not concerned. After all, if it hadn’t been for my disability and the need for extra growths cans, we would never have known about the anomalies that are believed to be present in 1 percent of the population.
Also since my last blog, I travelled to Plymouth and back on the train with Arthur. Apart from a poo explosion just as Louie dropped us off and having to change Arthur across 2 seats due to not being able to reach the changing unit and apart from a track defect meaning we had to get off a stop earlier than planned on the way back and be put in a taxi, it went well. As ever, Arthur was a good boy and didn’t cry at all. He enjoyed seeing family and friends and I now feel we can go anywhere on the train.
We are spending Christmas in Plymouth with my family. Elsa our cat will be coming too. The car will be quite full but there’s nowhere else I’d want to spend Arthur’s first Christmas.
We’ve finished baby sensory until next term and we have just completed a baby massage course which was useful. I hope to take Arthur to a music class next term
I am thinking of doing future blogs as videos. This will make it easier to fully explain myself and Arthur can take part too. If anyone has any questions or issue they would like me to discuss, please just comment below.
Have a wonderful Christmas all. Arthur’s Christmas Day outfit came today (thanks Grandma) so watch out for Facebook photos.
Lots of love to you all. Xxx
Saturday, October 26, 2019
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
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
Saturday, October 5, 2019
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
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
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