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.

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. 

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. 

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. 

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 :) 

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! 

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!!!

 

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!