Whilst I sit chilling on the comfy chair with my orange juice, chocolate digestives, duvet and Saturday afternoon films I suddenly feel completely and utterly relaxed for the first time in months. My body aches as it begins to unwind and my head is suddenly not worrying about jobs I need to do next or when it's time to cook the dinner. I hear you thinking well how can that be Possible for a parent with a child with special needs. Well I will tell you it is possible thanks to one amazing place called charlton farm.
Charlton farm is a beautiful children's hospice one of 3 run by the children's hospice south west charity. Charlton farm in set in idyllic countryside just outside the centre of the very busy city bristol. A haven where families like us can come for respite care. All care is handed over to the wonderful hospice carers so that parents can relax and unwind from the day to day stresses of having a child with special needs. The children are entertained with endless activities. A jacuzzi pool with lights and music, a soft play area with a massive ball pool, a games room, music room, messy room, teenagers room and a large lounge to chill out with toys, a fish tank and a large tv. Children are taken out on trips or walks up the drive to see the animals. A large outside area provides places to play in the sand or swing on the specially adapted wheelchair swings or supportive swings for those more able or just simply a place to ride around on one of the special bikes taking in the beautiful array of flowers and greenery in the beautifully thought out areas providing space to chill or to explore. A wonderful willow tunnel just big enough for children in wheelchairs to enjoy walking through too. There are siblings workers to help care for siblings of those being cared for to allow parents more of a break at times throughout their stay.
Through out the day amazing meals are provided for everyone. A chance for parents to enjoy a rare moment of eating a hot meal whilst actually eating at the same time as their children. Carers feed the children allowing for the special moments to be had without the stress of feeding time. There are always delicious cakes to tuck into whenever you feel you need a treat. A lovely chance to enjoy a hot mug of tea aswell without interruptions.
The hospice care provides family's with the chance to be just that, families. It takes away the stress of everyday routines, appointments, medicine administration, changing pads, battling with sleep, feeding and household chores and allows families to spend the special times together. Parents can have as much or as little time with their children as they like. Allowing for parents to have cuddles or play with their children or to simply just unwind on their own.
We have been coming to the hospice since Ethan was 9 months old. We get 14 nights to use a year. Every stay is incredibly special for us. It allows me to complete down time I need and is the only place I can truly relax and switch off. I am able to chill and get full nights sleep which is a rarity at home. I can also go for trips to cribbs causeway for some child free shopping all whilst knowing my precious boy is having an amazing time and being looked after so well.
But we must also remember that the hospice not only provides respite care for families but it also provides the very important end of life care that is needed by so many. The hospice allows for every poorly children who are near to the end of their precious lives to come and spend their last moments together as a family. This could be days weeks or months but it is important that the family can spend those moments together. The hospice has a special feel to it and some times children fully recover when they are thought not to. But for those who don't then the hospice provides the support for the whole family with a special starborn chapel room for the child to be at peace. The hospice also helps with funeral arrangements and afterlife care for the whole family.
There are chances to meet other families who are in the same situation. We have made many friends for life here. Families who are incredibly strong and who all face different challenges every day. Friends who truly understand what we go through every day. Without our care up here we wouldn't have made these friends and built up a support network for life. Being here also provides it's challenges showing you how fortunate you are. Some children are very poorly and it's heartbreaking to watch. Every time I am greatful for our situation and continually think of those who are suffering. The hospice provides more care and support than anyone will ever know.
The atmosphere up here is not sad it is full of love and happiness. Each child is catered for with the same level of love and adoration. Each child's needs are specially met and each child's wishes are met for their stay to achieve full happiness. Ethan is in his element when he's here. He is completely entertained from waking until bedtime (where he sleeps all night!!) we both come away fully renewed but also thankful that we're doing ok and Ethan is so well. We treasure every moment we have together and our thoughts stay with those who aren't doing so well. Truly a piece of heaven here on earth.
Saturday, 25 October 2014
Monday, 27 January 2014
A new adventure
Tomorrow is a big day for us! For the last 3 years Ethan has been seeing his Daddy at my house/flat. Every Tuesday Ethan and Ashley spend the day together. It's Ashley's day with Ethan but he's never had anywhere suitable to have Ethan so I've allowed him to use my house so he can see Ethan. This has not been an easy ride by any means. At the start when Ashley first left it was one of the hardest most challenging things to do every week. To have the person in my house who left us. Yes there have been arguments and disagreements but I kept on as I wanted Ethan to build a relationship with his dad. A lot of people haven't agreed with my decision but I feel this was the best option for us even if it wasn't easy. I very rarely get a lot of time in my house to clean or tidy so my one Tuesday a week without Ethan should be when I get it all done but that's not been able to happen. Having ash and Ethan in my house every week whilst cleaning was too stressful.
In the beginning I went back to work so this wasn't a problem I just dealt with it all which made it slightly easier. But working with a child who had 15 seizures a day and hardly slept took its toll on me. I was constantly tired, and constantly trying to fit work, cleaning, appointments and 24/7 care for Ethan all into very little time. Giving up my job was extremely hard and not a decision I took easily. I had worked hard to get where I was. I had studied hard at uni and was doing something I love with an amazing team of people. It wasn't just a job it was a career. I had to think of my health and what was best for Ethan and I. Once I gave up work things were slightly easier but with a child like Ethan who needs constant care I still struggled to fit everything in and wondered how I had ever managed working aswell!
When Ethan was 2 we got 2 year old funding which meant he could go to preschool for 12 hours a week. As he was little I booked him in for a couple of mornings. This gave me a few extra hours to go food shopping and have a quick clean. This was good for a couple of days but it soon became apparent that being in an environment with other children meant Ethan would easily pick up germs and be ill quite often. So I once again found myself trying to squeeze everything into a Tuesday. I was getting no respite for my self during the week and with no way of resting at night as Ethan still doesn't sleep well I was getting more and more tired!
When Ethan turnt 3 he got funding for 15 hours a week. I booked him in for 3 sessions a week. Two sessions being 9-3. I thought this was amazing and for a few sessions again I got lots achieved but as we had changed setting and The cold weather made an appearance Ethan once again became ill! He has had lots of illnesses and this has meant a lot of time off preschool for mummy cuddles. In amongst this are seizure days where Ethan needs to be at home to recover. So 3 years later I still find myself trying hard to keep on top of a poorly little man, deal with seizures, go to appointments, clean my flat, food shop and chores. I wanted to go back to uni to top up my degree but found it too much. I've added in some volunteering but still I struggle some weeks to cope with it all.
Don't get me wrong I love my life however hard it is and I'm not moaning I'm just saying it how it is. It is hard and so tomorrow is the start of what I hope is going to be a massive positive (also scary) change. Tomorrow I will have my flat free for one day and night a week. I have not had a regular night a week for me to get some rest and sleep so I am very much looking forward to this. I am lucky if I get 6 hours a night sleep. Most nights 1-4 are normal.I am shattered all the time and to have some freedom is going to do me the world of good. I will be able to clean and tidy and get things done but also have time to relax and look after myself. However good this sounds I am very nervous about my little man going! I know he will have an amazing time and will be more than well looked after but as much as it's been hard to have them here it's going to be hard without them. I've still had some control over what Ethan does and how he's looked after but I'm having to let that go and trust that everything will be ok! I know it will deep down but when I'm so in control with every single part of Ethan's routine every single day it's going to be hard to adjust.
A lot of people judge me for not going to work but I hope I've explained the reasons behind me not being able to work. My son comes first and he needs all the care and attention he can get to help make his life as comfortable and amazing as it can be. I'm looking forward to spending time alone with my boyfriend and friends and making time for myself. Being a full time carer is hard and I need to be at my best to help Ethan in every way I can.
In the beginning I went back to work so this wasn't a problem I just dealt with it all which made it slightly easier. But working with a child who had 15 seizures a day and hardly slept took its toll on me. I was constantly tired, and constantly trying to fit work, cleaning, appointments and 24/7 care for Ethan all into very little time. Giving up my job was extremely hard and not a decision I took easily. I had worked hard to get where I was. I had studied hard at uni and was doing something I love with an amazing team of people. It wasn't just a job it was a career. I had to think of my health and what was best for Ethan and I. Once I gave up work things were slightly easier but with a child like Ethan who needs constant care I still struggled to fit everything in and wondered how I had ever managed working aswell!
When Ethan was 2 we got 2 year old funding which meant he could go to preschool for 12 hours a week. As he was little I booked him in for a couple of mornings. This gave me a few extra hours to go food shopping and have a quick clean. This was good for a couple of days but it soon became apparent that being in an environment with other children meant Ethan would easily pick up germs and be ill quite often. So I once again found myself trying to squeeze everything into a Tuesday. I was getting no respite for my self during the week and with no way of resting at night as Ethan still doesn't sleep well I was getting more and more tired!
When Ethan turnt 3 he got funding for 15 hours a week. I booked him in for 3 sessions a week. Two sessions being 9-3. I thought this was amazing and for a few sessions again I got lots achieved but as we had changed setting and The cold weather made an appearance Ethan once again became ill! He has had lots of illnesses and this has meant a lot of time off preschool for mummy cuddles. In amongst this are seizure days where Ethan needs to be at home to recover. So 3 years later I still find myself trying hard to keep on top of a poorly little man, deal with seizures, go to appointments, clean my flat, food shop and chores. I wanted to go back to uni to top up my degree but found it too much. I've added in some volunteering but still I struggle some weeks to cope with it all.
Don't get me wrong I love my life however hard it is and I'm not moaning I'm just saying it how it is. It is hard and so tomorrow is the start of what I hope is going to be a massive positive (also scary) change. Tomorrow I will have my flat free for one day and night a week. I have not had a regular night a week for me to get some rest and sleep so I am very much looking forward to this. I am lucky if I get 6 hours a night sleep. Most nights 1-4 are normal.I am shattered all the time and to have some freedom is going to do me the world of good. I will be able to clean and tidy and get things done but also have time to relax and look after myself. However good this sounds I am very nervous about my little man going! I know he will have an amazing time and will be more than well looked after but as much as it's been hard to have them here it's going to be hard without them. I've still had some control over what Ethan does and how he's looked after but I'm having to let that go and trust that everything will be ok! I know it will deep down but when I'm so in control with every single part of Ethan's routine every single day it's going to be hard to adjust.
A lot of people judge me for not going to work but I hope I've explained the reasons behind me not being able to work. My son comes first and he needs all the care and attention he can get to help make his life as comfortable and amazing as it can be. I'm looking forward to spending time alone with my boyfriend and friends and making time for myself. Being a full time carer is hard and I need to be at my best to help Ethan in every way I can.
Sunday, 24 November 2013
Red bull, nurofen and cuddles
So the title of my blog pretty much sums up my weekend! This week I hurt my back lifting some of Ethan's equipment into my car. We have been borrowing a walking frame to check that it's the right thing for Ethan. I decided to take it into preschool for Ethan to try as they have lots of indoor and outdoor space for him to move around in. I obviously strained my back lifting this heavy piece of kit into my car and have paid the price for the rest of the week! Hurting my back has really highlighted the reality of Ethan's condition and how much help he really needs. Your probably thinking well you do it every day so why now?? Since hurting my back I've had to be careful as any lifting of Ethan has hurt. I've noticed just how much Ethan needs me to do everything for him. He is totally dependent on me for EVERYTHING. While his head control has come on and we've pretty much said he's got head control now which is a massive achievement he still is unable to sit up or stand alone. He lacks control in his arms and so is unable to play with toys himself. He can't help me to move him as he doesn't have the strength or understanding to do it. While we now have hoists at home they have highlighted just how much more space we need in our flat! As Ethan gets bigger every day and by bigger I mean taller, (I swear he shoots up every day!!), I have noticed how much harder it is to manoeuvre him. The hoists are amazing don't get me wrong but we've had a few issues with the whole starting to use them process!
The first problem I encountered was once hoisted Ethan should be put into his chair and then moved around to the next room. While this sounds easy, in reality this wasn't the case. I have carpets in the lounge and bedrooms and Lino in the hall. The door rods to connect these carpets are to high for Ethan's chair to be moved across so I was straining my back more moving room to room than I was just carrying Ethan. This issue has now be resolved in the short time by removing the door rods with the view to try flat door rods in the future. The second issue I came across was hoisting in our bathroom. To say our bathroom is tiny is not wrong! Having to hoist out the bath and into Ethan's chair is logistically a nightmare and very hard work! There is just not enough room!! How we can resolve this is uncertain at the moment so the battle goes on! So while I've had my bad back I have been trying to use the hoists as much as I can but it's not easy!
Ethan is only 3 and so isn't huge yet. While I need to save my back for when he gets bigger and I really can't lift him I'm also on the other hand wanting to still lift him sometimes. Not only is it quicker and easier but it is nice to be able to pick Ethan up and have a quick cuddle before he goes into his next position. I know I should be good but sometimes it's easier not to be!
Due to my bad back and both myself and Ethan having bad colds we cancelled our plans for the weekend. We're currently fundraising for a walking frame and specialised bed for Ethan and so had to miss a fundraiser as I'd been overdoing it getting ready for it, ironic right! As I mentioned before we borrowed a walker for a few weeks. The frame is a Leckey kidwalk and I can honestly say it's amazing! Ethan loves it and as a parent I cannot tell you how amazing it is to see your child's face light up through just being able to stand and move on his own! When you dream of having children you take a lot for granted. People always say I just want a healthy child and that's all. When your pregnant you never think what if my child can't walk or move, you just dream of their future and don't think about how they could be disabled and how they may not become a well known surgeon or a nurse or a pilot. I was no different but I knew that if I had a child with special needs that I would love them no matter what and it's true. My ultimate dream is for Ethan to be able to be independent and not have to rely on me for everything. That's all. However he does this will be amazing. I can't allow myself to actually dream this dream though as it causes heartache when I know this might not happen. We live every day as it comes. Having a walking frame will help give Ethan a small amount of independence. He is able to move the frame himself, it may be backwards at the moments, but that's great! He is so proud of himself and he loves how he can make the walker bounce up and down!
The other thing we're raising money for is a specialised bed. Now we can get some funding for this I'm not sure how much but we still need to raise a large amount for it. A specialised bed will help me to be able to change Ethan . It will save my back no end from bending over to change him or settling him at night. The bed will be able to move up and down and tilt at the head . Ethan suffers from reflux and so has to be up quite a lot to help this. At the moment he has a few pillows under him but if we could raise his head this would be much more comfortable for him.
Fundraising is important to me. I have struggled with health professionals and getting equipment. It's hard as a parent to have to fight for every bit of equipment that could immensely help you and your child. I'm fed up of waiting months on end for equipment which is so badly needed to help Ethan cope with every day life. I'm fed up with battling to prove why he needs things. This is why I'm taking matters into my own hands. It's quicker and believe me much less stressful! Fundraising is hard work and I know I over do it trying to organise things but it's much better than the stress of waiting! We are so greatful to all our supporters, friends and family for helping us. Without you all it would be impossible. While we are putting in our own money we don't have it all and so cannot thank you all enough for everything you to help us.
So to end on a high note. Whilst hurting my back has been hard it's also given me the time to take a step back and appreciate some one on one time with Ethan. We spend lots of time together but at the weekend were not often on our own at home. I love spending time with Ethan more than anything. I've noticed so many little changes in him. He is so happy and very cheeky. He passed wind and laughed! Now he does this a lot but this time he thought it was hilarious!! For a child with a neurological disorder this amazes me! Against everything he goes through he has his own character. He truly is amazing. He now gets excited when we get to our front door knowing we're home, he has to listen to one direction on repeat to cheer him up, he chooses his own snack, he look at me from the side of his eyes and smiles now, he watches my mouth when I talk to him and he smiles when I say good boy Ethan. He is on an incredibly hard journey and dispite it all he's happy. That is truly all I need to make my day. If he can smile dispite having had a seizure or no sleep well then who are we to complain. He truly is my little hero.
The first problem I encountered was once hoisted Ethan should be put into his chair and then moved around to the next room. While this sounds easy, in reality this wasn't the case. I have carpets in the lounge and bedrooms and Lino in the hall. The door rods to connect these carpets are to high for Ethan's chair to be moved across so I was straining my back more moving room to room than I was just carrying Ethan. This issue has now be resolved in the short time by removing the door rods with the view to try flat door rods in the future. The second issue I came across was hoisting in our bathroom. To say our bathroom is tiny is not wrong! Having to hoist out the bath and into Ethan's chair is logistically a nightmare and very hard work! There is just not enough room!! How we can resolve this is uncertain at the moment so the battle goes on! So while I've had my bad back I have been trying to use the hoists as much as I can but it's not easy!
Ethan is only 3 and so isn't huge yet. While I need to save my back for when he gets bigger and I really can't lift him I'm also on the other hand wanting to still lift him sometimes. Not only is it quicker and easier but it is nice to be able to pick Ethan up and have a quick cuddle before he goes into his next position. I know I should be good but sometimes it's easier not to be!
Due to my bad back and both myself and Ethan having bad colds we cancelled our plans for the weekend. We're currently fundraising for a walking frame and specialised bed for Ethan and so had to miss a fundraiser as I'd been overdoing it getting ready for it, ironic right! As I mentioned before we borrowed a walker for a few weeks. The frame is a Leckey kidwalk and I can honestly say it's amazing! Ethan loves it and as a parent I cannot tell you how amazing it is to see your child's face light up through just being able to stand and move on his own! When you dream of having children you take a lot for granted. People always say I just want a healthy child and that's all. When your pregnant you never think what if my child can't walk or move, you just dream of their future and don't think about how they could be disabled and how they may not become a well known surgeon or a nurse or a pilot. I was no different but I knew that if I had a child with special needs that I would love them no matter what and it's true. My ultimate dream is for Ethan to be able to be independent and not have to rely on me for everything. That's all. However he does this will be amazing. I can't allow myself to actually dream this dream though as it causes heartache when I know this might not happen. We live every day as it comes. Having a walking frame will help give Ethan a small amount of independence. He is able to move the frame himself, it may be backwards at the moments, but that's great! He is so proud of himself and he loves how he can make the walker bounce up and down!
The other thing we're raising money for is a specialised bed. Now we can get some funding for this I'm not sure how much but we still need to raise a large amount for it. A specialised bed will help me to be able to change Ethan . It will save my back no end from bending over to change him or settling him at night. The bed will be able to move up and down and tilt at the head . Ethan suffers from reflux and so has to be up quite a lot to help this. At the moment he has a few pillows under him but if we could raise his head this would be much more comfortable for him.
Fundraising is important to me. I have struggled with health professionals and getting equipment. It's hard as a parent to have to fight for every bit of equipment that could immensely help you and your child. I'm fed up of waiting months on end for equipment which is so badly needed to help Ethan cope with every day life. I'm fed up with battling to prove why he needs things. This is why I'm taking matters into my own hands. It's quicker and believe me much less stressful! Fundraising is hard work and I know I over do it trying to organise things but it's much better than the stress of waiting! We are so greatful to all our supporters, friends and family for helping us. Without you all it would be impossible. While we are putting in our own money we don't have it all and so cannot thank you all enough for everything you to help us.
So to end on a high note. Whilst hurting my back has been hard it's also given me the time to take a step back and appreciate some one on one time with Ethan. We spend lots of time together but at the weekend were not often on our own at home. I love spending time with Ethan more than anything. I've noticed so many little changes in him. He is so happy and very cheeky. He passed wind and laughed! Now he does this a lot but this time he thought it was hilarious!! For a child with a neurological disorder this amazes me! Against everything he goes through he has his own character. He truly is amazing. He now gets excited when we get to our front door knowing we're home, he has to listen to one direction on repeat to cheer him up, he chooses his own snack, he look at me from the side of his eyes and smiles now, he watches my mouth when I talk to him and he smiles when I say good boy Ethan. He is on an incredibly hard journey and dispite it all he's happy. That is truly all I need to make my day. If he can smile dispite having had a seizure or no sleep well then who are we to complain. He truly is my little hero.
Thursday, 21 November 2013
Thursday, 24 October 2013
Every little helps
A lots changed over the last few weeks. We have finally had the ceiling hoists installed. Everyday Ethan gets bigger and harder to lift. Although I am still able to lift Ethan now, I decided it was time to have a bit of help to ensure I can keep going on lifting him. We have been waiting for a handle on Ethan's chair so that once he's been hoisted he can be moved around in his chair.
This is the hoist in the lounge. It is right across Ethan's playmat so he can be picked up off the floor. This is the hoist we have used the most.
Ethan has different tracks in his bedroom. There is one track over his bed and one track over his sensory area. They are then joined and the adjoining track is able to be moved up and down and across each track meaning Ethan can be picked up from anywhere in the room.
The final track is in the bathroom. Now our bathroom is not very big in fact there's actually only just enough space to get in there! So hoisting is pretty tricky. We also have the added problem that we can either use the shower curtain or the hoist so until I get round to getting a shower screen I have to move the show curtain rail! Lifting Ethan out of the bath is hard work so any help is definitely appreciated it would just be lovely to have a bit more space to do it in!
Ethan's standing frame also arrived and has been fitted to him. We are slowly building up the time in it as Ethan has very stiff legs at the moment so finds it very hard to keep his legs completely straight for long. He is up to ten minutes at the moment. Some days he can do more others less. The more he can do the better.
The more that is put in place to help Ethan the better. Every small thing helps to build a better future for Ethan and provides his with more of a safe and enriching environment.
Sunday, 22 September 2013
Just one of those weeks!
This weeks been hard on both myself and Ethan. With a few new things added into our routine it's been hard to adjust.
Two weeks ago saw the start of myself going back to work 3 mornings a week and Ethan starting a new preschool two days a week. The first week went extremely well. I was in bed by nine having had Ethan settled by half 7 every night. Yes we were still up at 5 but that was ok because I was getting enough sleep. Washing was done, house work was up to date and lunch boxes were ready when they needed to be!! I thought this is going to be fine when I go back to uni! Then this week arrived!!
Monday was good then it started to go downhill Tuesday! I over did it trying to decorate Ethan's bedroom. I needed to get this done before the ceiling tracks come as won't be able to do this as easy when their in. I did two coats on two walls on Tuesday then finished the other two walls on Thursday. Ethan decided this week he didn't really need sleep so didn't settle until late then had disturbed nights and got up some mornings from 3 and 4! Then I woke up Friday with a very painful neck and shoulder unable to move properly followed by Ethan waking with a seizure which proved hard work for me that day. So luckily my knight in shining armour came to help out for a few hours in the afternoon (Steve)! After a hard day I thought a good nights sleep would help but no I woke up feeling worse! Ethan had another seizure then proceeded to be unsettled all day having small seizures. Last night he was sick and had a temperature.
This morning I woke up feeling better but still with a stiff neck and painful shoulder although much better than it has been. I took Ethan to PAU (paediatric assessment unit) at the hospital. I could've taken him to the out of hours doctors but I knew they wouldn't be able to put up his seizure meds up if Eth needed them to be put up. After examining Ethan the doctor said he had a throat virus which would explain the temp and increased seizures. He also put Ethan's seizure meds up slightly as he hadn't had a change in meds for a while. I'm always reluctant to do this so I leave it until it really needs to be done. As Ethan grows rapidly the meds need to be increased but this hasn't been done for quite a while so I decided we could go up a bit. Hopefully with paracetamol, cuddles and an increase in seizure meds we should see an improvement in a few days.
With a hard and tiring week which has seen Ethan poorly, a lack of sleep, complete disorganisation, a phone in sick to work to look after Ethan, Ethan missing his last ever day at the special needs preschool and a cancelled trip to longleat with friends it's left me questioning whether I'm ready to go back to uni and add even more stress into this already complicated routine!! So after a lot of thought I will be talking to the uni tomorrow to see if I can defer my place until next year. This will give us time to adjust to me being back at work part time and Ethan doing more hours at just one preschool now, then when Ethan goes to school full time next year I will hopefully be ready to give my degree the full attention that it will need.
I'm very grateful this week for all those who have helped pick up medicines (Karen), shopping (Gemma) or helped look after us (mum and Steve) and those who have cheered me up (Faye Freya and river!). So here's to what will hopefully be a more settled week which will end on Friday with a relaxing trip to the children's hospice and a much needed break for the weekend!
Two weeks ago saw the start of myself going back to work 3 mornings a week and Ethan starting a new preschool two days a week. The first week went extremely well. I was in bed by nine having had Ethan settled by half 7 every night. Yes we were still up at 5 but that was ok because I was getting enough sleep. Washing was done, house work was up to date and lunch boxes were ready when they needed to be!! I thought this is going to be fine when I go back to uni! Then this week arrived!!
Monday was good then it started to go downhill Tuesday! I over did it trying to decorate Ethan's bedroom. I needed to get this done before the ceiling tracks come as won't be able to do this as easy when their in. I did two coats on two walls on Tuesday then finished the other two walls on Thursday. Ethan decided this week he didn't really need sleep so didn't settle until late then had disturbed nights and got up some mornings from 3 and 4! Then I woke up Friday with a very painful neck and shoulder unable to move properly followed by Ethan waking with a seizure which proved hard work for me that day. So luckily my knight in shining armour came to help out for a few hours in the afternoon (Steve)! After a hard day I thought a good nights sleep would help but no I woke up feeling worse! Ethan had another seizure then proceeded to be unsettled all day having small seizures. Last night he was sick and had a temperature.
This morning I woke up feeling better but still with a stiff neck and painful shoulder although much better than it has been. I took Ethan to PAU (paediatric assessment unit) at the hospital. I could've taken him to the out of hours doctors but I knew they wouldn't be able to put up his seizure meds up if Eth needed them to be put up. After examining Ethan the doctor said he had a throat virus which would explain the temp and increased seizures. He also put Ethan's seizure meds up slightly as he hadn't had a change in meds for a while. I'm always reluctant to do this so I leave it until it really needs to be done. As Ethan grows rapidly the meds need to be increased but this hasn't been done for quite a while so I decided we could go up a bit. Hopefully with paracetamol, cuddles and an increase in seizure meds we should see an improvement in a few days.
With a hard and tiring week which has seen Ethan poorly, a lack of sleep, complete disorganisation, a phone in sick to work to look after Ethan, Ethan missing his last ever day at the special needs preschool and a cancelled trip to longleat with friends it's left me questioning whether I'm ready to go back to uni and add even more stress into this already complicated routine!! So after a lot of thought I will be talking to the uni tomorrow to see if I can defer my place until next year. This will give us time to adjust to me being back at work part time and Ethan doing more hours at just one preschool now, then when Ethan goes to school full time next year I will hopefully be ready to give my degree the full attention that it will need.
I'm very grateful this week for all those who have helped pick up medicines (Karen), shopping (Gemma) or helped look after us (mum and Steve) and those who have cheered me up (Faye Freya and river!). So here's to what will hopefully be a more settled week which will end on Friday with a relaxing trip to the children's hospice and a much needed break for the weekend!
Sunday, 1 September 2013
Making memories
What a wonderful summer we have had making memories. We've had wonderful trips out to various places (well mostly wonderful trips!! One bad experience at the sea life centre!!). We arranged to spend at least one day a week with Ethan's best buddy Samuel. This has worked up until the last week when neither of the boys were up to meeting due to colds. The boys have loved spending time together. We've spent time in Samuel's Nannys hot tub, playing at the park, walk around nine springs, sealife centre, activity day at fiveways and play days at both of our houses.
We have also enjoyed a trip to longleat with our friends Kate and Jess, a trip to Weymouth to see the carnival and fireworks with our lovely friends and been to visit lots of friends and family.
I have really enjoyed spending time with my special little man. I wanted to make his time off from preschool really special. In amongst days out we've had some lovely days chilling at home and exploring different messy activities. I've loved seeing his face light up when he's enjoying something, which has been a lot.
In amongst these lovely times there have been some hard times too!! Ethan doesn't like the heat so the first few weeks he really struggled to sleep and even with the cooler weather he's still struggled to sleep. He's not been settling down to sleep until gone ten most nights and then still waking up by 5. This has been pretty full on with no sleep but it could be worse!! On a plus he's only had one seizure which has been good and has now done 3 weeks without one so far.
During the week I'm used to having a bit of respite 3 mornings a week while Ethan is at preschool just to get on with jobs or catch up with sleep. Loosing this during the summer has been hard as the one day Ethan's with his dad has been filled with everything I need to get done plus trying to have some time to myself. As much as I've loved spending time with Ethan it's been very full on. I'm looking forward to getting back into a routine in September even though it may get a little crazy soon! I passed my foundation degree In early years a couple of years ago and after a year off and a year trying to get a c in my gcse maths so I could get onto the top up course I've finally done it and am back to uni in September. I'm also starting volunteering for a few mornings a week at the local children's centre. While this is all very exciting I am also very scared as it will be pretty full on for us but its something I need to do to make our future better.
This week Ethan goes back to preschool two mornings a week then the following week he starts his new preschool and will begin another two mornings at a mainstream preschool which will be gradually built up to him doing a full day twice a week. I'm very excited for this new change for Ethan. I wanted to add in extra hours for him so that he gets used to it before he starts school the following year. He will be attending his special preschool for 6 hours a week and the mainstream one for 12 hours. Hopefully this will help his development and will also give me time to study, work and get the housework done!
We are off for one more day trip to longleat tomorrow as our last summer holiday treat and to make the most of our annual passes. Then it's all go from Wednesday. Here's to fun, excitement, scary times and a better future!!
We have also enjoyed a trip to longleat with our friends Kate and Jess, a trip to Weymouth to see the carnival and fireworks with our lovely friends and been to visit lots of friends and family.
I have really enjoyed spending time with my special little man. I wanted to make his time off from preschool really special. In amongst days out we've had some lovely days chilling at home and exploring different messy activities. I've loved seeing his face light up when he's enjoying something, which has been a lot.
In amongst these lovely times there have been some hard times too!! Ethan doesn't like the heat so the first few weeks he really struggled to sleep and even with the cooler weather he's still struggled to sleep. He's not been settling down to sleep until gone ten most nights and then still waking up by 5. This has been pretty full on with no sleep but it could be worse!! On a plus he's only had one seizure which has been good and has now done 3 weeks without one so far.
During the week I'm used to having a bit of respite 3 mornings a week while Ethan is at preschool just to get on with jobs or catch up with sleep. Loosing this during the summer has been hard as the one day Ethan's with his dad has been filled with everything I need to get done plus trying to have some time to myself. As much as I've loved spending time with Ethan it's been very full on. I'm looking forward to getting back into a routine in September even though it may get a little crazy soon! I passed my foundation degree In early years a couple of years ago and after a year off and a year trying to get a c in my gcse maths so I could get onto the top up course I've finally done it and am back to uni in September. I'm also starting volunteering for a few mornings a week at the local children's centre. While this is all very exciting I am also very scared as it will be pretty full on for us but its something I need to do to make our future better.
This week Ethan goes back to preschool two mornings a week then the following week he starts his new preschool and will begin another two mornings at a mainstream preschool which will be gradually built up to him doing a full day twice a week. I'm very excited for this new change for Ethan. I wanted to add in extra hours for him so that he gets used to it before he starts school the following year. He will be attending his special preschool for 6 hours a week and the mainstream one for 12 hours. Hopefully this will help his development and will also give me time to study, work and get the housework done!
We are off for one more day trip to longleat tomorrow as our last summer holiday treat and to make the most of our annual passes. Then it's all go from Wednesday. Here's to fun, excitement, scary times and a better future!!
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