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.
Sunday 24 November 2013
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!!
Friday 28 June 2013
Time really does fly by!
So the last few months have been pretty crazy! I don't feel like we've stopped until this week. We've had a wonderful time visiting friends, celebrating weddings and birthdays and spending time with family. I thought I'd take this opportunity to catch you up to speed with all that's been happening with Ethan over the last month or so.
Ethan's enjoyed spending time with special friends including his best friends Samuel and Freya.
Ethan has a special bond with Samuel. They absolutely love each other and get very excited when they see each other. They know their both special and so this brings them closer together. Ethan and Freya also have a special bond but for a different reason. They are 2 months apart and have grown up together. Ethan adores Freya and she adores him. Freya doesn't see Ethan as any different to her and she loves sharing experiences with him making sure he's involved in everything she does. She also has a special voice for Ethan which is super cute.
We also met another special friend another Samuel. Ethan and Samuel have the same condition so it was lovely to finally meet the gorgeous little man. These two share a unique bond and I hope this will be the start of a wonderful friendship.
So in amongst spending time with Ethan's friends we've had a few changes with equipment. Ethan hasn't had a standing frame for a while at home as the last one wasn't supportive enough. We have now chosen a lecky my go stander which will support Ethan from the back again. He still needs the support behind him so that he can strengthen his muscles. We have been searching for a bath seat for months, trialling different ones and have finally found one which will support Ethan properly and it will be with us soon.
After a lot of deliberating I have had to admit defeat and have accepted a hoist to help with lifting Ethan. We have measured for ceiling tracks in the lounge bedroom and bathroom to help lift Ethan up from the floor, out of bed and from the bath. In the meantime we have had a mobile hoist arrive to trial. It doesn't work in the bathroom so we are in the process of applying for ceiling tracks in the bathroom.
This week we have also had a ramp put in to help us get into the front of our house as we had two steps which were getting harder to push Ethan over. This has made things an awful lot easier and will continue to help support us as Ethan grows bigger.
Accepting all these things has been hard going as they're all permanent and a constant reminder that my baby boy will need help every day. I've come to terms with it all because I know it's what's best for Ethan but that doesn't mean it's any easier to accept.
On a happier note I can now confirm that Ethan is now able to roll from his back onto his front without help. He's been doing it for a couple of weeks and I couldn't be prouder. He's worked so hard to get here. He's slowly working out that if he rolls over he has to be on his tummy and so is starting to enjoy it!
It's been a hectic couple of months with ups and downs as always. But like always my baby bit smiles through it all! He continues to show determination and strength to meet each days new challenges. The next couple of months will see new challenges with the start of a new mainstream preschool but I have no doubt that Ethan will tackle every new day as it comes :).
Ethan's enjoyed spending time with special friends including his best friends Samuel and Freya.
Ethan has a special bond with Samuel. They absolutely love each other and get very excited when they see each other. They know their both special and so this brings them closer together. Ethan and Freya also have a special bond but for a different reason. They are 2 months apart and have grown up together. Ethan adores Freya and she adores him. Freya doesn't see Ethan as any different to her and she loves sharing experiences with him making sure he's involved in everything she does. She also has a special voice for Ethan which is super cute.
We also met another special friend another Samuel. Ethan and Samuel have the same condition so it was lovely to finally meet the gorgeous little man. These two share a unique bond and I hope this will be the start of a wonderful friendship.
So in amongst spending time with Ethan's friends we've had a few changes with equipment. Ethan hasn't had a standing frame for a while at home as the last one wasn't supportive enough. We have now chosen a lecky my go stander which will support Ethan from the back again. He still needs the support behind him so that he can strengthen his muscles. We have been searching for a bath seat for months, trialling different ones and have finally found one which will support Ethan properly and it will be with us soon.
After a lot of deliberating I have had to admit defeat and have accepted a hoist to help with lifting Ethan. We have measured for ceiling tracks in the lounge bedroom and bathroom to help lift Ethan up from the floor, out of bed and from the bath. In the meantime we have had a mobile hoist arrive to trial. It doesn't work in the bathroom so we are in the process of applying for ceiling tracks in the bathroom.
This week we have also had a ramp put in to help us get into the front of our house as we had two steps which were getting harder to push Ethan over. This has made things an awful lot easier and will continue to help support us as Ethan grows bigger.
Accepting all these things has been hard going as they're all permanent and a constant reminder that my baby boy will need help every day. I've come to terms with it all because I know it's what's best for Ethan but that doesn't mean it's any easier to accept.
On a happier note I can now confirm that Ethan is now able to roll from his back onto his front without help. He's been doing it for a couple of weeks and I couldn't be prouder. He's worked so hard to get here. He's slowly working out that if he rolls over he has to be on his tummy and so is starting to enjoy it!
It's been a hectic couple of months with ups and downs as always. But like always my baby bit smiles through it all! He continues to show determination and strength to meet each days new challenges. The next couple of months will see new challenges with the start of a new mainstream preschool but I have no doubt that Ethan will tackle every new day as it comes :).
Sunday 19 May 2013
Special times
This weekend I went away with friends so Ethan had a weekend with his Daddy. Leaving Ethan this weekend was particularly hard because he was poorly. I knew he was in safe hands but all I want to do when he's poorly is hold him in my arms to make him better. On my return today I was greeted with lovely smiles from my little man. As we cuddled throughout the afternoon and played with his toys I began to take in every little bit of what he was doing. I spend all my time with my baby boy and notice different things but this time away made me notice different things. Despite being poorly today my baby felt so strong. He held me tighter, he stood up straighter but more than that he was using his arms more. After lots of cuddles I put Ethan on his tummy on his cushion. Not only did Ethan hold his head up by himself but he was beginning to push up with his left arm. I placed his toy in front of him and he was moving his arms to touch the buttons. I watched with so much more intensity like I hadn't seen him for so long! He watched as he pressed a button, then moved his arm to press the button again.
Spending so much time with someone you take everything for granted. Today I had my eyes opened again to the amazing achievements of my baby boy. He amazes me every day with his strength and determination. He has been poorly this week with a bad throat and chest. We started him on antibiotics but unfortunately it seems he's allergic to penicillin. He's had numerous small seizures this week and spent all of yesterday being sick. Yet today despite having another seizure this morning he was so happy this afternoon. He amazes me with how strong he is. He was quiet and cuddly but so content. Coming home to my special boy today was amazing.
Everyone tells me it's good to have time for myself and relax but this weekend was even harder to relax. You never fully switch off when your a parent. I had an amazing time but Ethan was always on my mind.
I love having time to myself but coming home today made me realise how much I love Ethan and how much my life is so much brighter and better with him in it. Life with a child with a life limiting disorder is hard sometimes but days like today reminded that none of the stress of appointments, the rushing around to fit everything into a day or the sleepless nights matters because our days together are precious and should be treasured in every single way.
Spending so much time with someone you take everything for granted. Today I had my eyes opened again to the amazing achievements of my baby boy. He amazes me every day with his strength and determination. He has been poorly this week with a bad throat and chest. We started him on antibiotics but unfortunately it seems he's allergic to penicillin. He's had numerous small seizures this week and spent all of yesterday being sick. Yet today despite having another seizure this morning he was so happy this afternoon. He amazes me with how strong he is. He was quiet and cuddly but so content. Coming home to my special boy today was amazing.
Everyone tells me it's good to have time for myself and relax but this weekend was even harder to relax. You never fully switch off when your a parent. I had an amazing time but Ethan was always on my mind.
I love having time to myself but coming home today made me realise how much I love Ethan and how much my life is so much brighter and better with him in it. Life with a child with a life limiting disorder is hard sometimes but days like today reminded that none of the stress of appointments, the rushing around to fit everything into a day or the sleepless nights matters because our days together are precious and should be treasured in every single way.
Monday 22 April 2013
It's only the beginning :)
BIBIC
About a year ago I started looking for new ways to help and encourage Ethan's development. As a mum I want the best for my son and want to help him develop in every way I can. Since a young age Ethan has been seeing an NHS physiotherapist and occupational therapist. Ethan absolutely adores them and has been amazingly accepting of the exercises they gave him. As time went on I started to wonder if there was more I could be doing for my baby boy.
Watching other people's children learn to sit, then crawl and then walk has not been easy. For a while I didn't notice it, but then I started to notice it more especially when children much younger than Ethan started doing things he couldn't. There is nothing I want more than for my baby boy to be able to be running around causing havoc! I started to look for more that I could do for Ethan and that's when a friend suggested BIBIC.
I decided to look into it and started by finding their website. On there were testimonials from parents who were told their child would never walk and yet with the help of a BIBIC program their child had learnt the skills they needed and had started walking! I wanted this for Ethan so I started the process! Ethan has an initial assessment which was over the phone. We discussed Ethan and his strengths and what we wanted help with. My main concerns at the time was Ethan's head control and the fact that he didn't open his hands. We booked the first two day assessment for July last year.
We went to the clinic in Bridgwater for the first of our two days their. On the first day the therapists got to know Ethan. They watched him and assessed what skills he had and what skills he lacked. Ethan worked extremely hard that day and was rewarded with a dip in the sensory pool there. Ethan's development was plotted onto a developmental book which we would get to keep. Ethan didn't tick many boxes on this first assessment but he did tick more than I thought he would. On the second day we went back for them to show us Ethan's program.
The program was to be put into place everyday with Ethan at home. The exercises would take half an hour each session and would work alongside the physio he already had in place. We set targets to Improve Ethan's head control, open his hands and to help encourage leg control. I will always remember what the therapist said to me that day.... "We will get his hands open". This filled me with such hope. We went home and put the program into place which included; full body massage with vibrating body massager, head control exercises, massage to the hand, exercises to encourage the hands to be used, activities to encourage eye control, creeping along a mat and exercises to encourage leg control amongst other things.
After four months we returned to BIBIC. I was so excited to show them all little am had learnt. In just four months Ethan's head control had hugely improved and was holding his head up for more than 50% of the time, his eye control had improved slightly, general strength was better, but above all Ethan's hands were opening! Yes he still has them closed a lot but he was opening and closing them all by himself! I was over the moon! With all this improvement Ethan had ticked more boxes and had moved up a bit in his development chart. Ethan's program was tweaked and a coup,e of new exercises were added and another appointment booked for 5 months time.
We returned for the next assessment last week. This was by far a very exciting visit! Ethan's head control had increased again and is now holding his head up for 90% of the time, hands open for around 80% of the time, vision and communication improved and major improvements in arm control and bringing them into the midline (something Ethan wasn't doing at all). They were so impressed as were we. Ethan moved up 20 points on his development chart and moved into another development area.
Ethan has worked incredibly hard. He never complains and always willingly does his exercises. He laughs uncontrollably at the massage and loves the singing in the program. I am so overwhelmed by the progress Ethan is making, I never thought my little man would be able to do all he is doing and every little milestone is massive to us. Without the help of this program and Ethan's hard work he would not be doing as we'll as he is now. He's made such progress in less than a year and I cannot wait to see what he does next!
BIBIC is a charity and so all their money is fundraised or donated. We pay for the treatment Ethan receives. We however only pay a small percentage of what the treatment actually costs. Without the support of generous people the clinic would not be able to run and help support children just like Ethan. What they do changes lives and so they need your support, please visit their website to learn how you could help them to continue their fantastic work. Www.bibic.org.uk
About a year ago I started looking for new ways to help and encourage Ethan's development. As a mum I want the best for my son and want to help him develop in every way I can. Since a young age Ethan has been seeing an NHS physiotherapist and occupational therapist. Ethan absolutely adores them and has been amazingly accepting of the exercises they gave him. As time went on I started to wonder if there was more I could be doing for my baby boy.
Watching other people's children learn to sit, then crawl and then walk has not been easy. For a while I didn't notice it, but then I started to notice it more especially when children much younger than Ethan started doing things he couldn't. There is nothing I want more than for my baby boy to be able to be running around causing havoc! I started to look for more that I could do for Ethan and that's when a friend suggested BIBIC.
I decided to look into it and started by finding their website. On there were testimonials from parents who were told their child would never walk and yet with the help of a BIBIC program their child had learnt the skills they needed and had started walking! I wanted this for Ethan so I started the process! Ethan has an initial assessment which was over the phone. We discussed Ethan and his strengths and what we wanted help with. My main concerns at the time was Ethan's head control and the fact that he didn't open his hands. We booked the first two day assessment for July last year.
We went to the clinic in Bridgwater for the first of our two days their. On the first day the therapists got to know Ethan. They watched him and assessed what skills he had and what skills he lacked. Ethan worked extremely hard that day and was rewarded with a dip in the sensory pool there. Ethan's development was plotted onto a developmental book which we would get to keep. Ethan didn't tick many boxes on this first assessment but he did tick more than I thought he would. On the second day we went back for them to show us Ethan's program.
The program was to be put into place everyday with Ethan at home. The exercises would take half an hour each session and would work alongside the physio he already had in place. We set targets to Improve Ethan's head control, open his hands and to help encourage leg control. I will always remember what the therapist said to me that day.... "We will get his hands open". This filled me with such hope. We went home and put the program into place which included; full body massage with vibrating body massager, head control exercises, massage to the hand, exercises to encourage the hands to be used, activities to encourage eye control, creeping along a mat and exercises to encourage leg control amongst other things.
After four months we returned to BIBIC. I was so excited to show them all little am had learnt. In just four months Ethan's head control had hugely improved and was holding his head up for more than 50% of the time, his eye control had improved slightly, general strength was better, but above all Ethan's hands were opening! Yes he still has them closed a lot but he was opening and closing them all by himself! I was over the moon! With all this improvement Ethan had ticked more boxes and had moved up a bit in his development chart. Ethan's program was tweaked and a coup,e of new exercises were added and another appointment booked for 5 months time.
We returned for the next assessment last week. This was by far a very exciting visit! Ethan's head control had increased again and is now holding his head up for 90% of the time, hands open for around 80% of the time, vision and communication improved and major improvements in arm control and bringing them into the midline (something Ethan wasn't doing at all). They were so impressed as were we. Ethan moved up 20 points on his development chart and moved into another development area.
Ethan has worked incredibly hard. He never complains and always willingly does his exercises. He laughs uncontrollably at the massage and loves the singing in the program. I am so overwhelmed by the progress Ethan is making, I never thought my little man would be able to do all he is doing and every little milestone is massive to us. Without the help of this program and Ethan's hard work he would not be doing as we'll as he is now. He's made such progress in less than a year and I cannot wait to see what he does next!
BIBIC is a charity and so all their money is fundraised or donated. We pay for the treatment Ethan receives. We however only pay a small percentage of what the treatment actually costs. Without the support of generous people the clinic would not be able to run and help support children just like Ethan. What they do changes lives and so they need your support, please visit their website to learn how you could help them to continue their fantastic work. Www.bibic.org.uk
Wednesday 27 March 2013
Faye and Angel
In my last blog you read about special friends. I have the most amazing and supportive friends and family who help us out a lot, but there are two of my best friends who we really couldn't live without, Faye and Angel. They are the most amazing couple and most amazing friends. They are not only my friends but their like family. I've never met anyone as selfless or more willing to do anything they can to help other people. They make me smile every time I see them, laugh when I'm sad, are my shoulder to cry on, hold my hand when I need support, give me advice, tell me when I'm being stupid or when I need to do something for myself. But above all this they have provided the best support network Ethan and I could ever need.
Faye and Angel have been there for both myself and Ethan through everything. This journey has bought highs and kows and Faye and Angel have been there through all of them. Their two of a very small handful of people I can truly count on to be there for me and Ethan. They unconditionally love Ethan and have never treated Ethan any differently. They look after Ethan with such care and ensure he is involved in everything. They are thoughtful and always ensure Ethan's presents are catered for his needs and will truly be able to allow him to use them. They are always up for fundraising and getting involved in whatever crazy idea I have next to raise money!
Faye and Angel are Ethan's godparents and I truly believe I couldn't have made a better choice. Ethan absolutely adores them both. Ethan responds to the sound of both of their voices and truly knows who they are. He smiles and laughs with them both and is more than content when he is with them. I know that I can fully trust them with my precious baby boy because I know that they want what's best for Ethan and that they would never treat him any differently to their own children. Ethan adores their children because they have been bought up so well and really reflect the amazingness of their parents.
It's very rare in life to find people like this who would do anything for you, who would drop anything to be there to help or to help make our life easier. They truly support us and take an interest in everything we do and have to go through. I know their always at the end of the phone or a short drive away. I feel truly honoured to have them as my friends and honestly love them to pieces. Mine and Ethan's life wouldn't be the same without them and We would both like to say a huge thankyou to you both for all you do for us. We love you both and thankyou for being our amazing friends and for being a huge and special part of our life. People come and go but I know you will be a part of our lives forever.
Saturday 16 March 2013
Special friends
So this special journey were on brings such highs and lows everyday. When I think we've had a rough week with seizures and no sleep I then look around and see we're not suffering as much as others we know. Having a child who has a life limiting condition is hard because along with it we meet other children who are more vulnerable than Ethan, families who are suffering every single day, families whose children don't make it through, children who are put through pain every single day, brave children who still continue to smile even though their suffering but more than that families who unconditionally love their children no matter what.
However hard this special journey is without it we wouldn't have met the amazingly strong families and built such strong new friendships. I have amazing friends and family who accept Ethan for who he is, but no one truly understands our special journey as much as those who are actually on the same special journey. They understand the lack of sleep, the prejudice our children face, the looks of discust because our children are different, the heartache of seeing our children have seizures, the hard reality that our children may never walk or talk or be able to do things for them selves and the fact that our children can't tell us how they feel or how their condition really affects them.
On this journey unfortunately not all of our special children make it through. Whilst we can all feel the pain of the families going through it, you just can't fully feel that pain of loosing a child until you have gone through it yourself. I cannot imagine how hard it must be for these parents. We can do our best to be there and support but for these families the only people who can truly help them is those in the same position.
Every day I am reminded of the harsh reality of this life. I treasure every moment I have with my special boy and will continue to hold him tight and bring happiness to him every day. Having people on the same journey makes it easier to understand how your feeling. Seeing how strong others going through harder situations is what keeps me strong. I try to not moan about the hard times as I know that just round the corner someone else is going through a harder time than me. I put to you today to live your life without regrets, love those who are close to you and treasure every precious moment you have with your children. Imagine how others are feeling before you complain about your own life or how your child is acting up. I would love more than anything for Ethan to be running around causing havoc and being "normal". The most important thing is to remember someone else is worse off.
My son is special and is loved unconditionally no matter what. He makes me smile every day and amazes me with his strength and determination. He has special friends who are even stronger and it amazes me that no matter what's thrown at them they carry on. Their bodies go through so much and it's so unfair. But their here with us and that's all we need to remember and treasure. They are no different to other children and I thank those of you who see them as no different. My heart goes out to those who have lost their special children on this special journey and pray you will find strength to live on in their memory and make them proud.
To all my special friends you are amazing and so are your special children. Thankyou for understanding and helping us through.
Monday 25 February 2013
Just another day in the office!
So this morning started with Ethan having a seizure. When Ethan has a seizure after 5 minutes he can have a shot of midazolam. After a further 5 minutes if the seizure hasn't stopped he can have another shot. After a second shot an ambulance has to be called. Today's seizure stopped on the tenth minute narrowingly missing needing a second shot. Whilst midazolam is a very effective drug and stops the seizures it comes with its down falls. It makes Ethan very sleepy to start with knocking him out for a few hours. But once it starts to wear off it makes him very sick. Today he was sick twice in an hour both times needing bath. The midazolam then makes Ethan very grumpy.
Ethan's seizure are becoming more predictable now coming every 3 weeks and most weeks 3 weeks to the day. I should be getting more prepared for them but I'm not! We've had a lovely busy week seeing friends with a lot of travel and so my housework and chores have taken a battering. I've also been extremely tired what with doing fun things and Ethan getting up at 3 and 4 in the morning. But today it's made me realise that doing nice things means I'm catching up for weeks! I've sat cuddling ethan this afternoon and wanting to tidy and clean. I need to get more organised so that when this happens next week I'm prepared.
I've spent most of the afternoon crying today. You'd have thought I'd be used to Ethan having seizures by now, and generally I am, but today I kept watching him and I just kept feeling sad and helpless. I couldn't do anything to help him or take the pain away. I'm having a day where I hate the genetic disorder, i hate epilepsy and I hate midazolam, but most of all I hate the effect it all has on my baby boy. No child should ever have to go through this and no parent should ever have to go through the pain of seeing their child go through this.
Everything's becoming increasingly harder as Ethan gets older. Just a simple trip out is hard. I constantly worry about Ethan how he will cope with new situations. He has a strict routine and gets very upset if we can't stick to it. This makes going out hard as no matter where we are I have to stick to the routine. As Ethan gets bigger its harder to move him and lift him. Yesterday was interesting having to change his nappy in the back of the car on the freezing motorway! Everyday brings a new challenge, normal things are just as hard as when he's having a bad day. I love my baby boy and will do anything for him. Making his life easier and helping him to be happy and feel safe is the one way I feel I can help him. All I can do to help is make Ethan as comfortable as I can. I've had my weak moment today and let it get to me but now i must put my strong exterior on and carry on for Ethan.
Ethan's seizure are becoming more predictable now coming every 3 weeks and most weeks 3 weeks to the day. I should be getting more prepared for them but I'm not! We've had a lovely busy week seeing friends with a lot of travel and so my housework and chores have taken a battering. I've also been extremely tired what with doing fun things and Ethan getting up at 3 and 4 in the morning. But today it's made me realise that doing nice things means I'm catching up for weeks! I've sat cuddling ethan this afternoon and wanting to tidy and clean. I need to get more organised so that when this happens next week I'm prepared.
I've spent most of the afternoon crying today. You'd have thought I'd be used to Ethan having seizures by now, and generally I am, but today I kept watching him and I just kept feeling sad and helpless. I couldn't do anything to help him or take the pain away. I'm having a day where I hate the genetic disorder, i hate epilepsy and I hate midazolam, but most of all I hate the effect it all has on my baby boy. No child should ever have to go through this and no parent should ever have to go through the pain of seeing their child go through this.
Everything's becoming increasingly harder as Ethan gets older. Just a simple trip out is hard. I constantly worry about Ethan how he will cope with new situations. He has a strict routine and gets very upset if we can't stick to it. This makes going out hard as no matter where we are I have to stick to the routine. As Ethan gets bigger its harder to move him and lift him. Yesterday was interesting having to change his nappy in the back of the car on the freezing motorway! Everyday brings a new challenge, normal things are just as hard as when he's having a bad day. I love my baby boy and will do anything for him. Making his life easier and helping him to be happy and feel safe is the one way I feel I can help him. All I can do to help is make Ethan as comfortable as I can. I've had my weak moment today and let it get to me but now i must put my strong exterior on and carry on for Ethan.
Saturday 16 February 2013
Sweet dreams
Ethan has scoliosis. This means his spine is slightly curved. It's not something you immediately notice as Ethan doesn't sit or stand unaided, but when he is being held in a sitting position you really can notice it as his back curves out to the right. Ethan also has "frogged" legs! This means that when lying or sitting Ethan's legs flop down to the side in the same shape as frogs legs! Hard to describe. Ethan has had some scans done on his hips to check the joints as he doesn't weight bare all the time. We are still waiting for the results but were hoping all is well and that he just has naughty legs!
Ethan's physio suggested a sleep system to help with his posture and improve his legs. At first I imagined this big contraption which would strap Ethan into place and I wasn't to sure at all! I obviously agreed to have it as whatever will help my little man I will at least try! When they bought the sleep system round and got it out the box I felt so relieved! It's such a simple design and I knew Ethan wouldn't be bothered by it.
Here is the first layer which fits to the cot mattress:
This shows where Ethan needs to lie in order to be straight. On top of this sits what I describe as plastic book ends! These are what will keep Ethan straight and aim to straighten his back and keep his hips inline bringing his legs together. As part of Ethan's condition he has what's called dystonia. Which means his muscles go between being stiff and relaxed. Some days Ethan is easily able to straighten his legs and the next he could find it hard to straighten his legs because his muscles are so tight. This sleep system will hopefully help to relax his muscles and train them to be in a better position.
Ethan's physio suggested a sleep system to help with his posture and improve his legs. At first I imagined this big contraption which would strap Ethan into place and I wasn't to sure at all! I obviously agreed to have it as whatever will help my little man I will at least try! When they bought the sleep system round and got it out the box I felt so relieved! It's such a simple design and I knew Ethan wouldn't be bothered by it.
Here is the first layer which fits to the cot mattress:
Over the top of the bookends goes a new mattress which moulds the sleep system.
Ethan then lies in the sleep system. It's so simple and there's no need for him be strapped in or restricted at all.
As you can see Ethan is straight in the system and his legs are pretty straight. Ethan sleeps well in it and we're hoping to see an improvement in his posture :)
Monday 28 January 2013
The simple things
Our new home
While going about our daily routine I got to thinking about how much the little things in our life make such a difference to us. The biggest change in our life is our new home. When I was pregnant we moved into a 2 bedroom house. Down Into the back of the property there were 13 large steps and our car was parked up a bit further on a slight hill. In order to get from the car into the front door there were steps around otherwise it was a short walk to get access into the property. We never thought about the implications of this and just how much this would impact our lives further down the road. At first it was ok but as Ethan got bigger I began to struggle more and more. The simple task of just taking Ethan in from a trip out became a massive ordeal. Carrying Ethan and all our stuff really put a strain on my back. Ethan is unable to hold onto me so this became increasingly harder to support him. It became more dangerous when I had a fall down the hill with Ethan in my arms. Luckily Ethan was ok and I came away with just a badly cut knee. I hear you say to yourself why didn't you put him in the pushchair and take him round that way.....good question! Ethan has a specialised pushchair which is rather large! In the hallway there was a large shoe cupboard which meant we couldn't get the pushchair in through the door meaning the only way in was down the 13 steps.We put our names on the local housing list and in December we got offered the flat were now in. This move has helped us enormously. The small task of getting out of the car and getting into our home has been made so much easier! Although we have a small walk from the car it is now possible to put Ethan into his pushchair and wheel him in through the front door. Our hallway is also big enough so Ethan's chair can stay up with plenty of room to move round it. We've moved into a 2 bedroom flat which is very spacious. It also means we don't have to walk up stairs which also saves my back an awful lot too! I've had back problems since I was little so every little bit I can do to help it is great! Our lounge is spacious and allows Ethan to have lots of room for all his equipment and toys.
The benefits
Our old house was damp and mouldy and never really felt like home for us. Here we really feel like we're at home and we are already so happy :) Ethan had a bad chest all the time at the old place and since being here Ethan's chest has been clear. Ethan's health is very important and it's vital that he stays well all the time. Ethan is happy and settled here as am I. Our living room has a large window and out of it we can see the main road a few yards away. Ethan loves standing (with support) up against the back of the sofa and looking out the window. He loves being on his feet and this is such a new experience for him. He can watch the trees blow in the wind or the cars go by or simply the people walking their dogs!
Ethan loves watching lights. I made him a sensory room at the old place but we weren't aloud to put anything on the walls. Here I've been able to put Ethan's sensory net up on the ceiling and mirrors on the wall and a sensory board that I made him. I just need someone to help put his uv light up then his sensory area will be finished :) he gets such joy out of it and I love seeing his little face light up, literally!
When Ethan got his specialised pushchair we stopped being able to just walk up the shop without the hassle of having to get the chair out of the car and set it up. We only went for walks when we had gone out in the car somewhere. Now we can go for walks again as the chairs already up. We can also walk to preschool which means Ethan is gaining more sensory experiences.
Our new start
This is a new fresh start for us and the simple things in our life make such a difference. I love seeing Ethan smile and this new start is just what we both needed. My back will be saved for a bit longer and Ethan can continue on his long journey of getting stronger. We're so happy and now we can really enjoy being a family and having an accessible home!
Tuesday 22 January 2013
My Hero
My Hero
Today Ethan had his weekly visit from the portage worker. For those of you that don't know what a portage worker is, a portage worker works with children to help develop skills that the child doesn't have. Each week Clare works with Ethan to help develop his skills through activities. The emphasis at the moment is on his hands. They work together with toys and messy activities to encourage Ethan to use his hands, practising opening them and holding and dropping objects. Ethan has just started to open his hands and leaving them open for prolonged periods. This is a major milestone for Ethan. Being able to open his hands and begin to touch and hold objects will open up a world of experiences for Ethan. This simple action is one we take for granted. As Ethan is unable to move around himself he is in the same positions all the time. We reposition him regularly so that he doesn't get uncomfortable but when he's in that position he is unable to entertain himself. I often worry that he might get bored or frustrated even that he is unable to independently play. I play with Ethan a lot and always encourage him to hold toys. Now he can open his hands he is able to hold and grasp toys easier and will now with help let go of toys. We practise with the shape sorters by dropping the shapes into the sorter. Ethan doesn't have control over his arms so we practice lifting his arms to his mouth. This is something Ethan loves! He loves to chew and suck on his hands and I would love for him to one day be able to do this independently.
Encouraging Ethans development is very important to me. Every little milestone is massive for us and as they are very far between it really is a big celebration everytime he does something even if he does it once and then doesn't ever repeat it! I think this is something that you miss out on with a child who develops "normally". With Ethan I really get to appreciate every little thing about him. The way he looks at me (another new skill) and smiles, the way he watches my mouth when I talk, the way he snuggles into me, the way he loves to be touched, how he loves to have his nappy changed, the excitement on his face when he listens to music, how his face lights up when he watches lights but most of all how much he takes in. You take for granted things like the first time your child holds a toy, or when they look at you and smile, the first time they blow you a kiss or sit up unaided. For me every little thing is special and I get to really treasure every moment I share with my special boy. I melt inside everytime Ethan looks at me and holds my gaze then slowly smiles, which is so rewarding to see that despite all he's been through he is such a happy little man.
Every day we do physio with Ethan. We stretch his legs and arms, we play on his tummy to strengthen his neck, we lie him on his side to bring his arms round, we do long sitting to encourage straight legs and we encourage his eye contact with tracking toys. We have also started a program with BIBIC. This program starts with an all over body massage massaging his arms, legs, hands, neck and back. Ethan also does exercises on a physio ball and practising grabbing toys trying to bring his arms together. He practices rolling and creeping along the physio mat. Each program takes half an hour each to complete but has been so worth it. In just three months of starting the BIBIC program Ethan's head control has improved, his eye contact has improved and most of all his hands are open 80 per cent of the time. It just goes to show that all the hard work Ethan does every day really pays off. Ethan never complains about doing his exercises. He knows what to do in all of the exercises
and is getting stronger at them every time.
People always ask me "so what's he doing??" I reply and say the same as before. This could get me down but it doesn't. My little man is so strong and I will always love him for just being him. He makes me proud every day with his strength and determination. Yes I'd love him to walk and run and be independent but why get down about the things he can't do?? Instead I celebrate what he can do and that is make me one proud mummy!!!
Sunday 20 January 2013
My first blog
My first blog
So this is my first blog. I've been reading a blog written by someone I know and I've been really enjoying it. I've been considering writing my own for a while and have finally bitten the bullet tonight and decided to start recording our special journey you. I hope you enjoy reading our roller coaster life and can get a real insight into the way we live.
About us
My names Naomi and my little hero is my son Ethan. We live in Somerset in a little flat. It's just the two of us and we like it that way. My Ethan is a little hero and this blog is about him and our daily celebrations and struggles. Our life is pretty hectic and very hard at times. This is due to the fact that my little hero has a rare genetic disorder - ARX. This condition affects his development and at the age of two he is still at the developmental level of a 3-6 month old. Ethan is the happiest child I know. He has a smile that will melt anyones heart and his infectious laugh fills any empty room.
Where our journey began
My beautiful baby boy was born in July 2010. After a forceps delivery Ethan had to spend a few days in hospital due to low blood sugar levels. For any new parent this is hard as all you want to do is take your precious newborn home. At four days old we finally got to take our new bundle of joy home. Myself and Ethan's dad excitedly took our baby boy home blissfully unaware of what was about to unfold. I was upstairs feeding Ethan and Ashley Ethan's dad was downstairs. I finished feeding Ethan and was just about to wind him when he started jerking his arms and legs on the left side of his body. He stared at me with cold eyes. I screamed for Ash and said to him what's he doing make him stop. I was so scared. Ashley took Ethan and cuddled him. A few moments later he stopped. Little did I know that this would be Ethan's first of thousands horrible seizures. The next day we took Ethan to the doctors for a lump behind his ear. The doctor informed us it was a lymph node and that it was nothing to worry about but what he was worried about was this jerking episode. Ethan had a second one before the doctors and the doctor rushed straight down to PAU (paediatric assessment unit). I have never been so scared in all my life. What was happening to my little baby boy. Ethan was admitted onto the children's ward. Once on the ward Ethan continued to have his jerking episodes which became more frequent. Over the next few days we were in and out of hospital until we were finally admitted properly. Ethan's jerking episodes became worse. The tests began, MRI scans, blood tests, EEG's, lumbar punctures and regular heart and pulse monitorings. Ethan was heavily sedated with anti epileptic drugs. We had a trip in an ambulance to a hospital 40 minutes away for an EEG. Seeing my tiny baby boy heavily sedated and hooked up to machines was not how I imagined my first few weeks of becoming a mum would be. I have never cried so much and felt so scared but at the same feeling a strength from within which kept me going. On the outside I gave off my strong appearance which i still do today but inside I couldn't help the thoughts of whether I would ever get to take my baby home and whether he would actually survive.
Those first few days seem such a long time ago yet as I write this they are still as raw as ever. In floods of tears I continue to tell you that after a few weeks in hospital we finally made it home just in time to go and celebrate my cousins wedding day. Such a beautiful day was slightly over clouded by yet another seizure. Once again Ethan was admitted back onto the childrens ward. It was at this visit that it was decided that ethan would be started on a daily dose of an anti epileptic drug called Phenobarbitone. Now home and armed with drugs we started our journey. Ethan continued to have seizures everyday sometimes up to ten a day. He would have a seizure, then want feeding, then would fall asleep then be woken by a seizure and then want feeding again. This would happen over and over again. I was breast feeding and was feeding Ethan hourly. I was struggling so at 6 weeks I decided to put Ethan on a combi feed plan. Ethan had lost so much weight that this lasted a week before he was fully on formula. This helped and Ethan began to be a little more settled and began to put on weight.
The end of of my relationship
Things were tense at home. With a very poorly child things were stressfull with regular hospital visits and visits from health professionals. But to top it all off I finally admitted to having mild post natal depression. Ethan was just 3 months old when his dad decided he couldn't deal with the situation and took the decision to leave. I have never felt so alone and crushed in all my life but I knew I had to stay strong for my little man. We soon got used to being on our own and I now know that this was the best decision and has made me a stronger person.
The next year
Ethan continued with seizures and the tests continued to find a cause. We began to see a neurologist and later in the year we started the genetic testing procedure. During this time Ethan's development didn't progress at a normal rate. Whilst most baby start to gain head control and begin to smile Ethan didn't gain head control and began to smile a few months later. However Ethan's first Christmas when he was just 6 months old he was extremely poorly and after a lot of nasty seizures Ethan began to loose his first gained skill of smiling. As if our journey hadn't been hard enough this had to happen. My babies smile was taken. He didn't start smiling again for another few months which seemed like an eternity. Whilst Ethan regained his smile and eventually his infectious giggle this was it for the first year.
The diagnosis
It took until April 2012 for us to get the diagnosis of ARX. A rare genetic disorder which causes epileptic seizures and developmental delay. This is limited information on this disorder. At the age of 2 and half Ethan's development is very limited. He cannot fully support his own head yet, although this Is getting stronger, he cannot sit, crawl, walk or play with Toys properly. Despite all of this Ethan's seizure are more controlled and has a few seizures every few weeks now. Ethan smiles and laughs especially when he is being tickled, watching lights of listening to music. He is a joy to be around and lights up my world every day.
Where we are now
Ethan is 2 and a half now and although I have told you a lot of information this does not even touch the surface of how brave my little hero has been. Through all he's been through he remains a chilled out little man and takes everything with a pinch of salt. I've given you a quick insight into our roller coaster life but with my following blogs I will give you more of insight into our day to day life. The things that make us tick and the things that tick us off! I hope you've enjoyed this first blog and will continue to join us on the journey of a life time into the unknown!
So this is my first blog. I've been reading a blog written by someone I know and I've been really enjoying it. I've been considering writing my own for a while and have finally bitten the bullet tonight and decided to start recording our special journey you. I hope you enjoy reading our roller coaster life and can get a real insight into the way we live.
About us
My names Naomi and my little hero is my son Ethan. We live in Somerset in a little flat. It's just the two of us and we like it that way. My Ethan is a little hero and this blog is about him and our daily celebrations and struggles. Our life is pretty hectic and very hard at times. This is due to the fact that my little hero has a rare genetic disorder - ARX. This condition affects his development and at the age of two he is still at the developmental level of a 3-6 month old. Ethan is the happiest child I know. He has a smile that will melt anyones heart and his infectious laugh fills any empty room.
Where our journey began
My beautiful baby boy was born in July 2010. After a forceps delivery Ethan had to spend a few days in hospital due to low blood sugar levels. For any new parent this is hard as all you want to do is take your precious newborn home. At four days old we finally got to take our new bundle of joy home. Myself and Ethan's dad excitedly took our baby boy home blissfully unaware of what was about to unfold. I was upstairs feeding Ethan and Ashley Ethan's dad was downstairs. I finished feeding Ethan and was just about to wind him when he started jerking his arms and legs on the left side of his body. He stared at me with cold eyes. I screamed for Ash and said to him what's he doing make him stop. I was so scared. Ashley took Ethan and cuddled him. A few moments later he stopped. Little did I know that this would be Ethan's first of thousands horrible seizures. The next day we took Ethan to the doctors for a lump behind his ear. The doctor informed us it was a lymph node and that it was nothing to worry about but what he was worried about was this jerking episode. Ethan had a second one before the doctors and the doctor rushed straight down to PAU (paediatric assessment unit). I have never been so scared in all my life. What was happening to my little baby boy. Ethan was admitted onto the children's ward. Once on the ward Ethan continued to have his jerking episodes which became more frequent. Over the next few days we were in and out of hospital until we were finally admitted properly. Ethan's jerking episodes became worse. The tests began, MRI scans, blood tests, EEG's, lumbar punctures and regular heart and pulse monitorings. Ethan was heavily sedated with anti epileptic drugs. We had a trip in an ambulance to a hospital 40 minutes away for an EEG. Seeing my tiny baby boy heavily sedated and hooked up to machines was not how I imagined my first few weeks of becoming a mum would be. I have never cried so much and felt so scared but at the same feeling a strength from within which kept me going. On the outside I gave off my strong appearance which i still do today but inside I couldn't help the thoughts of whether I would ever get to take my baby home and whether he would actually survive.
Those first few days seem such a long time ago yet as I write this they are still as raw as ever. In floods of tears I continue to tell you that after a few weeks in hospital we finally made it home just in time to go and celebrate my cousins wedding day. Such a beautiful day was slightly over clouded by yet another seizure. Once again Ethan was admitted back onto the childrens ward. It was at this visit that it was decided that ethan would be started on a daily dose of an anti epileptic drug called Phenobarbitone. Now home and armed with drugs we started our journey. Ethan continued to have seizures everyday sometimes up to ten a day. He would have a seizure, then want feeding, then would fall asleep then be woken by a seizure and then want feeding again. This would happen over and over again. I was breast feeding and was feeding Ethan hourly. I was struggling so at 6 weeks I decided to put Ethan on a combi feed plan. Ethan had lost so much weight that this lasted a week before he was fully on formula. This helped and Ethan began to be a little more settled and began to put on weight.
The end of of my relationship
Things were tense at home. With a very poorly child things were stressfull with regular hospital visits and visits from health professionals. But to top it all off I finally admitted to having mild post natal depression. Ethan was just 3 months old when his dad decided he couldn't deal with the situation and took the decision to leave. I have never felt so alone and crushed in all my life but I knew I had to stay strong for my little man. We soon got used to being on our own and I now know that this was the best decision and has made me a stronger person.
The next year
Ethan continued with seizures and the tests continued to find a cause. We began to see a neurologist and later in the year we started the genetic testing procedure. During this time Ethan's development didn't progress at a normal rate. Whilst most baby start to gain head control and begin to smile Ethan didn't gain head control and began to smile a few months later. However Ethan's first Christmas when he was just 6 months old he was extremely poorly and after a lot of nasty seizures Ethan began to loose his first gained skill of smiling. As if our journey hadn't been hard enough this had to happen. My babies smile was taken. He didn't start smiling again for another few months which seemed like an eternity. Whilst Ethan regained his smile and eventually his infectious giggle this was it for the first year.
The diagnosis
It took until April 2012 for us to get the diagnosis of ARX. A rare genetic disorder which causes epileptic seizures and developmental delay. This is limited information on this disorder. At the age of 2 and half Ethan's development is very limited. He cannot fully support his own head yet, although this Is getting stronger, he cannot sit, crawl, walk or play with Toys properly. Despite all of this Ethan's seizure are more controlled and has a few seizures every few weeks now. Ethan smiles and laughs especially when he is being tickled, watching lights of listening to music. He is a joy to be around and lights up my world every day.
Where we are now
Ethan is 2 and a half now and although I have told you a lot of information this does not even touch the surface of how brave my little hero has been. Through all he's been through he remains a chilled out little man and takes everything with a pinch of salt. I've given you a quick insight into our roller coaster life but with my following blogs I will give you more of insight into our day to day life. The things that make us tick and the things that tick us off! I hope you've enjoyed this first blog and will continue to join us on the journey of a life time into the unknown!
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