The silent sufferer

Everytime I'm ill or in pain I think what if I couldn't communicate what was wrong with me. What if I couldn't touch the place it hurt to tell someone. What if I had to suffer in silence with my only way of telling someone that somethings wrong is by crying. This is what my baby boy goes through everyday. He can't tell me what hurts and how severe the pain is. All he can do is cry to tell me he's hurting or uncomfortable.

This week I was taken ill with what was thought to be viral meningitis, actually turnt out to be an incredibly nasty virus. I was able to communicate that my head felt like it was being pulled apart from the inside, that I couldn't look at light because it was blindingly bright, that I couldn't walk properly, that all my muscles ached and that my neck was very stiff and sore. It made me think what an earth does someone who can't communicate do when they feel like this. How are they supposed to get across the huge amount of pain they are in. I was scared when I couldn't see I felt like I was alone and unsure of what would happen next. I am fortunate enough to be able to voice these feelings and get help but Ethan can't. 

I was put through a barrage of tests from blood being taken, ct scans with scary die being put through my body at an alarming rate, lumbar punctures failed and successful.
I didn't think about how much pain I was in or actually how scared I actually was, my one and only thought was my little man. This is not a rare occurrence like it is for me, no he goes through this all the time (well maybe not the lumbar puncture but everything else).

Ethan was just one day old when he first had a blood sugar test yes only a small prick in your finger but none the less he was a day old. He was just four days old when he had his first blood test and cannula put in. It's hard trying to find veins with ethan  (something unfortunately he has got from me). The first time they tried it took ages. I watched as lots of nurse attempted to get blood from my son to no prevail.  His first cannula took 4 attempts leaving him with many bruises on his tiny body. 
Ethan was just 7 days old when he had his first lumbar puncture, one of only two times I couldn't watch him go through a procedure, the second being only a few months ago when he was being held down by nurses screaming his head off to try and get yet another cannula into him. I heard him screaming from the corridor and to this day it haunts me that I left him. Even more so now that I had one the other night and at the age of 30 I felt the pain of what my tiny baby went through. After the first attempt of mine I just burst into tears of utter horror that my 7 day old baby boy had been put through that. He couldn't tell anyone how painful it was and it cripples me that I wasn't there to hold him. This all came flooding back to me when I had my second lumbar puncture. I cried through the second one and sobbed to the lady in recovery how I couldn't believe I left my 7 day old baby to have one without me there.
Ethan had mri scans and ct scans as a tiny week old baby and although by this point he was so drugged up from seizure Meds he didn't know what was going on, seeing his fragile body be put through that is heart wrenching. He still felt every inch of the pain.

Everytime Ethan gets rushed in for increased seizures he has to have bloods taken. This is no easy task and seeing his body full of bruises from the attempts is horrible. He goes into hospital firstly not being able to tell anyone what's up, what's hurting or how he feels, then he gets prodded and pricked whilst everyone tries to work out what is wrong with him. I can only imagine how scared he must feel in a world unknown to him.

Ethan has no voice, I need to be his voice. It's often a process of elimination to find out what's wrong and sometimes we never do. Like with a baby you start with checking if they are wet, whether they are hungry, whether they need attention or whether it's pain. More often or not its pain and pain relief sorts it out. Then you next need to find out the source of the pain. Ethan quite often gets sore legs and this can be easily spotted by the fact he can't straighten his legs at all.
Sometimes you can detect a tummy ache by feeling his tummy or bringing up wind. I can see in his throat if it's red or inflamed and I can usually tell if his ears hurt by touching them.
This unfortunately is where it stops. I can't tell if ethan has a head ache or he aches from physio or he's teething or of he's just been in the same position too long.
My main objective is to keep my soilder comfortable. This can be achieved by moving him regularly, pain relief and cuddles.
Although he can't tell me what hurts or how he's feeling I hope I can continue to meet his needs through the power of love.

What a year!

As this year draws to a close I write my last blog of the year. I haven't managed to fill you all in as much as I've wanted to this year so thought this was a good chance to catch up on not only Ethan's year but us as a family too. 

2016 has bought us many challenges but as I begin to write this those seem to be out weighed by the good times.

The new year started a bit rough for me when I had a bit of a break down. Everything got on top of me as 2015 had bought us many challenges as a family and a lot of times where we had to pull together for various things. After I had sorted myself out I decided that I needed some time off work to make myself better. I then made the decision not to go back to work and left to be a full time mum. 

January then started properly with my gorgeous man proposing to me. I really truly have found someone who loves me no matter what. He supports me through everything, he tells and shows me every day how much he loves me. He is such a great daddy to our children and I couldn't have found anyone better to support us through our crazy life! We set a date as we didn't want to wait around so 2017 will bring us together as a proper family. 

Ethan has had such a mixed year. He has learnt so much and his awareness has increased so much. He is stronger and understanding more every day. I have lost count of how many times this year he has had work of the week and this just reflects his determination and hard work. He has jumped into school life learning how to use his eyes more to communicate. He has worked hard on his standing and can now stay in his stander for up to an hour. He has started to take reciprocal steps when in lift pants or in his walking frame. His understanding of symbols and pictures has increased and he is able to understand his routine. 

2016 has seen us spend a lot of time up in Bristol for appointments and stays. Ethan went in to stay in February for a week to have his gastrostomy PEG fitted and to have Botox in his calves and hamstrings. The PEG had worked so well and has allowed Ethan to sleep so much better. He appears more alert and definitely happier. He was having one cup of water a day (200ml), if that, and now we can get at least 1000ml into him a day. 

The Botox worked so well and allowed Ethan to complete physio easier every day. However this has run out and we are still awaiting a date for more Botox. Ethan has daily massages on his legs to help stretch them and we find he often needs more than one a day particularly during the night. His legs get so tight and sore so this needs a lot of stretching throughout the day a and at night.

Ethan at the end of 2015 and into 2016 started to have increased seizures again. He was having large ones every couple of weeks which then increased to small ones every day sometimes a couple a day. His big seizures increased so when we saw the neurologist he decided to put Ethan on a drug that he ha been on as a baby which worked well but he had side effects with it. We decided that it was a good time to try it again and it certainly has been a good drug for a few months. The neurologist also decided that it was time to see the epilepsy team in Bristol to see if we could proceed with the vns for epilepsy treatment as we just can't get the seizures controlled. 

So we went for some appointments to see the epilepsy team in Bristol and it was decided that Ethan would be a good candidate for The VNS so we were referred for tests. 

After a gruelling and horrendous week for Ethan in Bristol where he was taken off his meds it was decided that the VNS was and is the best option for Ethan. So 2017 will see another trip to Bristol for this to be inserted. After seeing Ethan off his meds and how many seizures he would be having I am very great full for the medicine that has stopped so much of the seizure activity. We hope that the VNS will help to eliminate Ethan's daily seizures which seem to be more frequent again at the moment and to hopefully limit the amount of midazolam that we need to give to him. 

The doctors are referring Ethan to a heart specialist to check that his heart changes are seizure related rather than another underlying problem. So this will be another trip to hospital next year as will the investigation into what's going on with his genitals as the first tests didn't show anything positive so they need to look deeper. 

In the summer Ethan's stars was proudly supported by the Wessex truck show who raised money to enable us to buy a heart rate monitor for Ethan. We thank all those that were involved in helping to get this life saving equipment for Ethan. 

Ethan has showed us that again no matter what he goes through he goes through it with a smile on his face. We are incredibly proud of all he has achieved this year. By his side he has had his little sister who has been an absolute blessing and reminds us every day how fortunate we are to have such a loving and funny little girl to get us through all the tough times. I could not be prouder of my little girl for always helping with Ethan's care and for helping to make him smile when he's sad. Dakota has changed a lot in a year and we can't wait to see 2017 when she will start school.

All in all 2016 treated us well but 2017 really will be our year, house move, wedding and lots of fun in between. Ethan's appointments will fill in the gaps but we continue to be proud of all he achieves.

Happy new year from all of us and thank you for your continued support. 

Don't judge a book by its cover

Some people just absolutely do not get how hard and busy our life is caring for a child with complex needs. I am completely and utterly mentally and physically drained all of the time. Looking after Ethan is a full time job 24/7. 

I do the majority of his care on my own. Ethan goes to his dad's every other weekend. This means I have two full on weeks with Ethan full of sleepless nights, attending countless appointments, lifting in and out of the car, taking apart and putting the chair in the car and full care of a child who is unable to meet any of his care needs himself. 

I order his medicines and nappies to ensure we don't run out. I rearrange and book appointments. I do his physiotherapy and daily stretching of his muscles and massage. I administer life saving medicines daily to keep my son alive. 

By the time these two weeks are up I am exhausted. I am in need of lots of sleep which I cannot catch up on in just two nights. I have to cancel a lot of plans on theses weekends because sometimes my body just shuts down and I become poorly and unable to carry on. These weekends are to relax and gather my thoughts ready for mummy duties on a Sunday night again but I still have a flat to look after and ensure I am back in the game ready for the next two weeks. 

This leaves very little time for me to do anything else at all. I also have all the usual jobs that come with having a family. My flat gets neglected because obviously my sons needs are greater than a clean home or a tidy garden or a clean car. 

I would rather wash feed and encourage my sons development above anything else because he is all that matters. 

I have been working on top of all of this for the last year. My days off in the week are full of appointments seeing lots of health professionals for Ethan's varying conditions and needs. They are also full of tidying, cleaning and washing. All of this is done on very little sleep as Ethan is not a great sleeper!! Then every couple of weeks a seizure is thrown in to keep me on my toes! This throws everything out the window and wipes us both out! Seeing your child go through this traumatic experience is horrific, the thoughts that your child may not come out of it are overwhelming and this emotional strain is what wipes me out after them. 

I am so incredibly thankful that my baby boy is alive and well and that really is all that matters. He is my absolute world and to me he matters more than a clean house, garden or car. So before you judge all the mess that surrounds me why not think about when I am supposed to fit all of this in when my schedule is so tight and full as it is. I don't have a lot of down time but I still have to fit it in otherwise I would not be able to carry on giving the standard of care and love to Ethan that I do. 

Ethan is a loving happy boy and his needs for me come above anything else. 

I am no longer a single parent and this makes me incredibly happy! I have an incredibly supportive and loving partner who supports us in every way. He too is also mentally and physically drained. He works full time all week and then helps with all the care when he is home from work. Yes some of the pressure has been lifted for me but it still doesn't mean there isn't extra time for me. We do everything together as Ethan is getting bigger and his needs are increasing. It's not often a case of one or the other to meet these needs its more a case of needing two people to meet these needs. Steve does a lot of the manual lifting for me which I am unable to do. He has quickly adapted to life with a child with complex needs and helps with the stretching and medicines and water feeds. But above all he provides me with emotional support. He takes a lot from me because I am tired and worn out and constantly on edge as to what's going to happen next. He is an incredible human being who loves me and Ethan no matter what. He supports us in a way no one can imagine. 

Together we can face the world and those that judge. It's hard to deal with this on top of everything else. My emotional limits are exhausted and I would rather not have to deal with the extra stress of people who judge us. So before you judge that my flat, my garden or car are not up to your cleanliness or tidiness standards please look at all the facts and decide what's more important. Because for me having a child who is happy and thriving and has all their needs met far outways anything else! 

August can't come quick enough!

August can't come quick enough, the 11th to be precise. This is the day I've been waiting for, the day my car gets paid off. When Ethan was born I had a Vauxhall Astra sports hatch. It was lovely I loved it but when Ethan needed a specialised wheelchair it wouldn't fit in my boot so I bought a bigger car on finance, a Vauxhall zafira. It's lasted us for the last couple of years and last year we got Ethan a new car seat which turns to help make it easier to get him in and out. This is much easier. The problem is the wheelchair. It is so heavy and has to be taken apart every time it gets put in the boot. This makes going out with Ethan harder and puts a lot of strain on my back. It's easier when Steve is with me because we can take it in turns lowering the pain to both our backs! 

Today Ethan had a dentist appointment. This meant he needed picking up from school, going to the dentist and then back to school. This meant 4 lots of lifting the wheelchair and Ethan into and out of the car. So tonight I was very glad of the hoists to lift Ethan all evening. My backs feeling a bit better this evening after a rest which is good.

By the end of the day most days I ache. Some nights I struggle to sit still or even stay sat on the sofa due to the aching. Our day usually starts early and today was no exception! Ethan was wide awake at 3.30 this morning then was grumpy which meant lots of cuddles until school! 

He came home happier and we managed to have a mini disco in his bedroom while I swung him in his hoist sling! He was laughing away it was lovely! We had a lovely few hours before bed but then I noticed he had a bit of a warm head so checked his temp and it was slightly high. Ethan struggles to control his temperature so we have to keep an eye on him getting hot as it can cause seizures. I put him to bed as as I did he had a small seizure bang on!! He settled and has woken having another few minute one. 

So although I'm tired and achy tonight I will be sleeping very lightly to listen out extra hard for my baby boy. 

So August can't come quick enough so that on tired days like today I won't be quite as achy from lifting the chair in and out the car!! 

Woody's roundup!

As this year comes to a close its always nice to look back on the year you've had. As always one of highs and lows, excitement and sadness. 

I went back to work in January so have been back for a year now. I have really enjoyed being back. I think I've finally got the right balance between working and resting. Ethan has a lot of appointments so I can still only work part time so I can go to all of these. The start of the year went well and the first few terms were good but since September I feel like I've just not stopped!! Ethan had lots of appointments which took up a lot of my days off leaving not a lot of time to get housework done or catch up on much needed sleep. I have made it through and have had a much needed rest over this holiday. 

Ethan's health has been pretty good this year. Hardly any infections or need for antibiotics which is good. He did have chickenpox which as his immune system is fragile he took a real battering with it. It knocked him for six and he was completely covered taking 3 weeks to heal. 

Think we were both bored by the end of it and I was ready to go back to work on the third week!! 

Appointment wise things have been mostly positive. Ethan's legs continue to be tight so lots of massage and because his Botox was a success they have agreed to keep this rolling so every 6 months he will have Botox to relax his muscles making it easier to stretch his legs and help make them stronger. 

Ethan has been struggling with drinking fluids for a while now and after being referred to speech and language for assessments and then to see a gastric specialist it has been decided that the best option for Ethan is to have a gastrostomy tube into his stomach to help get fluids into Ethan. This can also be used for meds when needed. When Ethan has a seizure it's extra hard to get anything into him as he is so out of it that this will greatly help. We are hoping this operation will be in the new year sometime and that we aren't waiting too long! 

Eating wise Ethan is continuing to develop and is beginning to accept more lumps in his food and tolerating them without choking which is great. 

Ethan's seizures have been increased this year. He has been having a lot more small seizures almost daily sometimes. He has had a couple of medication changes this year to help with this and now he has reached the top of his allowances. This means we will be looking at either a change in meds or looking at a new device called a VNS to help deal with Ethan's seizures more effectively. This will be something we will be working on after Christmas. 

Ethan's eyes have become stronger and more focused and it was decided that he needed glasses to help with astigmatism in both eyes. The glasses have helped loads! Ethan focuses better on people and especially the television. He is doing well with his eye gaze which is really positive. He is also using PEC symbols at school which helps him know what's coming next and he is now able to choose the right symbol when asked to find it. This is very exciting for us and we hope this will continue to develop. 

Physio wise Ethan is doing really well and working very hard at all his programmes. He shows great strength and determination everyday it amazes us all. His back has become so much stronger and he even managed to sit unaided on Christmas Day! This is a massive achievement and will help open up so much for Ethan! His arms are become stronger and he is beginning to move them more. Especially grabbing things like my hair which he finds hilarious! We will continue to do all we can to encourage this next year. 

Ethan continues to be enjoying school and getting the most out of it! He loves swimming and riding on thunder the mechanical horse. He enjoys his ride on the school bus and is always laughing and "singing"! 

Ethan's sleep has not been great and this becomes increasingly harder for me to cope with everyday life when I am so tired! Ethan just carries on with no sleep not sure how he does it! This has meant missing a few days here and there as I've been so tired. I also got very poorly in the summer and after lots of tests it has been put down to exhaustion. I am beginning to listen to my body and having to slow down when needed and try to catch up on sleep when I can in between everything else. We applied for an overnight carer for once a week and this has been accepted so we look forward to someone joining us in the new year so I can get one full nights sleep in once a week! This will increase to two nights in the holiday. We lost our carer in October and we haven't had a replacement so this has been hard on me. Having relied on a few hours extra a week to catch up on things then going to nothing was quite hard. Hoping that having some sleep will help next year! 

The biggest change for us all is getting used to having another little person around! Becoming a step mother has been challenging but fun! I have loved getting to know Dakota and we have a strong bond which is like no other. Ethan has gained a little sister who he loves. Our little family has been completed (for now anyway!). It's been a tough year for us all but we have come out of it stronger together and happier than ever. We are excited for next year to continue our journey together as a family. 

So as another year passes we look forward to the next. We again remember those who we have lost on our way and those who are in worse situations than us. Please never take anything for granted and love those who are near to you and spend time letting them know how special they are to you. 

Looking through the glass

Have you ever wondered why the person walking down the street doesn't smile, or the person sat next to you looks like they've got two black eyes, or the person your working with is distant in their own world?? 

Have you ever thought about what's really going on in their life? What happens behind closed doors?? Why people look the way they do?? Do we take the time to find out people's stories or give them the chance to explain why they are the way they are today? No probably not. And the truth is we all do this.

Most days I head out the house having not brushed my hair and just scooped it up, walking around like a zombie not really knowing where or what I'm doing all with massive black bags under my eyes. Now most of the time I don't even notice other people but just sometimes I think what must people think. Do they think? Do they look at me and go what a state? Or is everyone else too wrapped up in their own stories to not notice or care what others actually look like or are doing? Most probably people don't notice but just for the ones who do, maybe give a thought to what's really going on in that persons life before you judge the way they look. 

Now to most people I just look like a normal tired person when I haven't got Ethan with me. Someone who probably got up late so didn't have time to brush their hair or put on some slap. When I have Ethan people are much more accepting of that look! Although most don't know the full extent of it, most would probably expect the parent of a child with special needs to look worn out. Truth is I didn't get up late, infact quite the opposite. I got up very early because Ethan struggles to sleep. Every night is different with him. He can settle really well and sleep right through until half 4 - 5, he can settle really well then be up anywhere from 2, he can not settle well and go to bed between 9-11 and sleep through until 5-6 or he can not settle well and go to be late and still be up between 2-5! You never really know what your gonna get with Ethan. There is no pattern. Every night his routine is the same. We get ready in his bedroom with his two sets of star lights, he then has a story in bed with me, kisses and one set of star lights go off and his Mozart music goes on. This is the same every night but the outcomes are very different. This could be due to Ethan's brain activity. His brain is constantly working on overtime and he finds it hard to relax. Ethan has a seizure every 2-3 weeks usually. He had a massive build up of 1-2 weeks before this seizure. He struggles to sleep, he grinds his teeth, he struggles to bring up wind, he is grumpy and upset. He is better if his seizures are more regular. Ethan's just gone 7 and a half weeks without a big seizure. The first 5 weeks he was good. He was settled, he slept most nights, the odd no sleep night thrown in, he ate well he was happy and content. Then the last week and a half he's been hard work. He's hardly slept, his sleep patterns have been all over the place, he's been grumpy, all the signs of a seizure and there's nothing you can do but wait it out. This morning he had his seizure. 14 minutes this one was. He needed one dose of midazolam and then slept for a few hours after. A seizure usually resets Ethan so hopefully my happy boy is back and we can enjoy a couple of weeks of happiness before we go again! 

Five years ago this week Ethan had his first seizure. That's where it all began. He used to have up to 15 small seizures a day. They lasted about 1-2 minutes each maybe less. As he grew a bit and his meds increased his seizures decreased but they got longer. He's got into a good pattern with them and it's easier now to know roughly when it's going to happen. They are night/sleep seizures so this disturbs his and my sleep. I'm on edge waiting for them at night. In between these big seizures Ethan had absence seizures where he stares and takes a few moments to come out of it. He also has crying seizures where he screams and his eyes flicker. The last other one is a gelastic seizure where Ethan with uncontrollably laugh with no reason as to why. These are part of Ethan and happen most days so we rarely notice how many he has. We do however still need to time these incase they go on for longer than five minutes and we need to intervene with meds. 

The midazolam that Ethan has is a rescue med to bring him out of his seizures. It's a nasty drug and isn't very nice for Ethan to have but it's needed to stop the seizures from going on too long. It knocks him out after a seizure and he will sleep for a few hours. It makes him very grumpy and sometimes very sick. Ethan doesn't eat a lot after a seizure and will take a couple of days to get back to normal. 

This unfortunately has become part of our everyday life and I'm very much used to his seizures. They are still horrible to watch but I'm used to it. I'm hardened to them and just take them in my stride. I can't remember every one but I can still recall all the nasty ones and the ones that have scared me or needed extra help from the paramedics or the hospital. 

The effects on Ethan's body is horrible and they completely wipe him out. After he's had a seizure I'm also knackered and I know this sounds strange because I'm not the one who's gone through it, but I think it's from the emotional strain and the worry of it all. It shouldn't be me who feels like this but it's the way it is!! Unfortunately life doesn't stop for me so I have to get on with it. 

So this may explain why I don't look my best all the time and why I don't have to time brush my hair or put my make up on. Maybe next time before you judge someone think about what they could be going through too. Maybe they have things going on that no one knows. Spare a thought for others stories because they might just be wanting to know yours. 

Just stop and think

As nearly 5 years passes since I gave birth to my gorgeous boy I can't help but keep relive our past this week. Sometimes everyday life just gets you down. It all becomes to much emotionally, physically and mentally. My body is tired, my brain is tired and I'm running out of tears. The last couple of months have been hard and full on and as a single parent it's hard to get away from it, to escape to a world where nothing's complicated you just have "normal" worries and stresses. 

I've not talked much about the beginning before or a lot about my harder days. I'm usually so bright and happy and ready to take on the world, but somedays I don't feel like that. Somedays things get too much and it's hard to get back to not overthinking and worrying. 

Five years ago I was heavily pregnant. When your pregnant you have all hopes and dreams of what your child will look like, will it be mummy will it be daddy. What colour hair will they have, what will their personality be like, what will they grow up to be, what interests will they have. You've planned things your going to do with them and whether they will be off to university or take on the world in some heroic way. I did all this. Five years later every now and then it comes to my mind that all of those things I had planned for my child won't ever or haven't ever happened. The stark realisation that actually my beautiful new baby will never be able to do normal things forever comes to my mind. 

Our first few days with our baby boy were "normal". We were just the same as every other new parent. The day we were discharged from the hospital was one of the most life changing days of my life. The first seizure was one of the most horrific days of my life. The period that came after that I call the dark period. The bit where my tiny little new born baby boy had his body put him through some truly horrific experiences. The most terrifying and upsetting time of my life but little did I know that this was just the start. That first seizure changed everything. That was the start of the long process of the realisation that everything is not ok with my perfect newborn. It wasn't until a couple of years later when we got the final diagnosis that I actually had the massive kick in the stomach that my little baby had a life limiting and life changing genetic disorder. 

I will never forget the day I received the diagnosis letter. All my hopes and dreams for a planned future had gone. Before the diagnosis I had all sorts flying round my head. Already Ethan hadn't reached a lot of milestones he hadn't held his head up, he couldn't sit he couldn't roll and he wasn't walking. I knew something was majorly wrong but until the piece of paper confirmed it I hadn't allowed myself to realise just exactly what that meant for Ethan's future. 

I am a very positive person but all of a sudden I knew I needed to protect my little boy from an unknown world. Our new journey had begun and I never knew how hard and life assuring it would become. 

I've pretty much got on with everything and taken each day as it comes as this is the best way. I can't change anything, I can't change the past, I can't change the diagnosis and I can't make Ethan better. There's no point worrying about what you can't do but there are still times where you are upset and angry that things aren't the way you planned. This journey is nothing like what I had planned all those five years ago. Most days I don't think about those dreams I once had, the dreams that I never once imagined my child as being disabled or having complex needs. I don't allow myself to think of those plans I had but sometimes it's hard to not think about all the things we've missed out on and all the things Ethan's never done or may never be able to do.

I've never seen my little man take his first steps, feed himself for the first time, start crawling and pull everything out of my cupboards, ride a bike, falling over and grazing his knees, shouting at me because he doesn't want to do what I've asked, he's never told me he loves me or asked for sweeties, he can't run off when we go to the park or play on the swings himself. The list goes on and most things parents wouldn't have thought twice about or even appreciated. 

My way of coping is to provide Ethan with opportunities where he can try and experience normal things. I do a lot with Ethan taking him for days out or making things at home. Just because he can't do a lot doesn't mean he can't still experience and enjoy life. It's not the life I had planned for him but I will try everyday to make it an amazing one for him. 

Our life is full of hospital visits, health appointments, plans and procedures, schedules and routines. I'm constantly on call or waiting for the next issue to pop up. Life is not on hold we are living a full and happy life but it's hard somedays to see those with easy life's moaning about their children or their lives. Just because I know Ethan's disabled and I've accepted his life is different doesn't mean it's not hard for me to see my friends children doing everything Ethan should be. One thing I have never done is compare Ethan to other children because he's him and nothing can change that but I can't help but be upset for all the experiences he does miss out on everyday. 

Never take your life for granted or your children's health and well being. I would give anything to let my little man have all of those "normal" things. I would never change him because he's who he is and I adore him. We have an amazing relationship and he brings joy to my world everyday. I will never take for granted that I have my little man and that he loves me even though he can't tell me. He's my rock, my reason to be happy and alive. I will live everyday making his world as comfortable as I can and encouraging him to be the best he can be. I will still have days where I get upset for the life Ethan could have had and it's still hard to watch children of Ethan's age doing normal things but I'm greatful for our special life and that we're in this adventure together no matter what. 

Lots to take on board

The last few weeks have been very full on and tiring. This has led to me having exhaustion this week which meant I had to spend most of my birthday in bed. Life as a special needs mum is hard work and tiring at the best of times and I know I've spoken about Ethan and his lack of sleep before but this has been one of the main contributing factors of my exhaustion. Over the last couple of weeks Ethan has not been sleeping well. Most nights he settles late and the can be up and awake ready for the day anywhere from 2am. He is often happy and able to chat to himself but he can't do anything for himself so gets easily bored. I can't switch off when hes chatting away as I have to have the monitors on to hear in case he has a seizure. If he's not happy then i have to see to him and that usually means I'm completely awake from this time which happens most of the time. So this means neither of us get a lot of sleep! Ethan normally goes to his Dads but we needed to swap a weekend as I had a wedding to attend and didn't have anyone to have Ethan so we swapped it which meant I had Ethan two weekends in a row. Then as the final straw we also had a weeks half term in amongst all of this. I love time off with Ethan but when I'm on my own with him having to lift and carry him in and out of the car, his pushchair in and out of the car and generally full care whilst he's with me it is extra tiring. We've also had a lot of appointments recently which has meant I've had to swap a lot of my working hours to compensate this leaving me not a lot of time to catch up with all the household jobs I have to do.

I know everyone has jobs to do and i understand that but when your completely exhausted its very hard to find the time and motivation to fit them all around such small time frames and leaving yourself enough time to rest and recuperate. Ethan needs a lot of attention and care when he is home as he can't do anything for himself it's like having a newborn baby around all the time except he doesn't catch up on any sleep at all! this makes getting tasks and jobs done when Ethan is around virtually impossible. Ethan has incredibly sensitive hearing which also doesn't allow for me to catch up on those jobs once he's in bed as you can't make a lot of noise while he goes off to sleep. This is not something I've encouraged as when he was a baby i used to try to do and make noise around him but as he's got older his hearing has got more sensitive and so to avoid upset and meltdowns its easier to be quiet. I went back to work in January and I've loved the time to be myself and interact with Adults and children but it also takes up a lot of my spare time. I constantly feel like I'm running around trying to finish everything in the little time I have. Being a single mum also means if I don't get things done then it doesn't get done!!

A lot of people tell me to slow down and take it easy. Believe me if I could i would. I do a lot of charity work and fundraising for Ethan but without this he wouldn't be able to have half the equipment or therapy that he needs. I don't do a lot for myself really. I don't have hobbies anymore due to time so it is important for me to see my friends and family when I can so that I can have some me time too. Having a weekend without Ethan gives me the time to do that. This weekend allowed myself and Steve to have a child free weekend to relax and catch up on much needed sleep. 

About a year ago we discovered my partner had a daughter. It's not been an easy ride for any of us over the last year but finally things are looking up and we can finally begin to be a proper family the four of us. Our weekends are starting to work out together now so we can have a proper family weekend all together every other weekend. I have loved getting to know our newest member of our family and so has Ethan. a little sister for him to protect. Our first proper full weekend the four of us was last weekend and it was very full on, but we had the best time together and I love how easy it is for us all to get on together as a little family unit. It will take us all time to adjust to this new situation and for myself and Steve it will take adjusting to giving time to each of our children at the same time. This is something I'm looking forward to doing and to be able to have some fun experiences all together.

Ethan has had some big appointments over the last year or so. Ethan has been seeing an orthopaedic surgeon for a few years who has been keeping an eye on his legs. Ethan has been struggling to stretch his leg muscles for a while. They became tighter and tighter so when we saw the surgeon in November they decided it was time to give Ethan some Botox injections to help loosen the muscles in his thighs and calves. After a long wait Ethan had the Botox this year. A trip to Bristol children's hospital for a general anaesthetic and injections in both legs, a few in each thigh and a couple in each calves. Ethan coped well with the procedure and the injections were a real success. Ethan has been able to pretty much fully straighten each leg. His right leg is still tighter but he's doing well. This has meant that physio has been a lot easier for him and means we can work harder on his legs to able to keep them straight and strengthen the muscles. He is able to stand in his standing frame for over half an hour now which before was around just ten minutes. He has extra physio sessions at school with his physios and extra sessions with us at home. Hopefully we can keep his strength up in his legs to avoid further Botox but he may need extra when this wears off. 

Ethan has had his standing frame at home and school "grown" due to him growing so quickly so these are all now up to his latest measurements. Ethan's outside wheelchair has also had recent adjustments too. Ethan is growing very tall and quickly so he's now gone into age 7-8 clothes!! Ethan's feet took a while to grow but seem to be growing nicely and he's just had a new pair of size 10 school shoes which flash!

Ethan had a rough few weeks with increased seizures. Ethan had some big seizures which last around 13 minutes and lots of crying seizures around a few minutes. He had a lot in a few weeks which was more than usual so after a couple of hospital visits, tonsillitis, antibiotics and change in seizure meds we seem to be back to the normal just everyday absent seizures and gelastic seizures and are still awaiting another big seizure after all these changes. 

We have been struggling to get Ethan to drink water for a few years now. We got by on the fact that he drank a couple of bottles of soya milk a day but recently he has dropped one of those and only most days drinks a few ounces in the morning. The hospice suggested talking to our paediatrician about the possibility of a gastrostomy tube for getting extra fluid in. Something I had to do a lot of thinking about but agreed it was best for getting fluids in especially when Ethan is poorly or has had a seizure. Our paediatrician agreed so after an assessment with the speech and language therapist and trying some thickener again for fluids with not a lot of extra fluid intake we have been referred to a consultant and are awaiting an appointment with them.

We have been waiting over a year for Ethan to see his opthamologist for his eyes. When we saw them some time ago they said Ethan has astigmatism in both eyes and will need glasses to help. Since then we have had about four appointments cancelled or moved so we were very happy to finally see them this month. Ethan now has a prescription for glasses so he will be getting those soon. There is no change to the backs of Ethan's eyes which is great news. His sight has improved slightly but the astigmatism has got slightly worse. The glasses may or may not help with Ethan as usually they help with reading which Ethan isn't able to do so we are going to see how he gets on with them. 

Ethan has been getting on well at school and has almost completed his first year at school. Ethan has been enjoying swimming in the hydro pool, horse riding on the mechanical horse, sensory activities, music sessions, trampolining, Tacpac and starting to use the eye gaze equipment. Ethan's communication has improved lots and he is aware of the Pecs symbols they use at school and is able to concentrate and listen when shown them. He can eye point to the one he needs. The eye gaze equipment is able to track Ethan's eye movements and allows Ethan to operate simple games with his eyes. An exciting time for Ethan and his learning and i will update more at the end of term.

It has been a busy time for us both but we continue with hope and strength. Ethan has worked very hard and continues to show us his determination to succeed. I continue to be one very proud mummy. 

Pause for thought

Writing this blog has been one of the hardest ones to word. Usually the words flow so easily but this one has been hard to get my point across without sounding like I'm moaning or trying to look for sympathy. I'm really not. My life is no where near as hard as some and I am eternally greatful for the life I have and that my little boy is hear to share every moment with me. 

Sometimes it's frustrating when people are going about their daily lives and everything is a struggle to them. Most of these people have "normal" things to deal with. I'm not saying that those things are unimportant or that our day is the hardest out of everyone's. I know it's not and in very greatful for how good our life is compared to others. When I hear those moaning that their child is mis behaving or their struggling to save money to extend a house they already own I find it hard sometimes etc. Our life is hectic, full of hospital appointments, seizures, physio schedules, strict routines, lifting, moving, feeding, changing, work, early mornings and late nights all on very little sleep. Ethan needs full support 24 hours a day as he's unable to attend to any of his own needs himself.  People don't understand our life and that's ok, frustrating sometimes, but ok. Unless your in someone else's  shoes then you won't. Everyone handles things differently and we all different strengths and coping methods. We have many people supporting us through our journey and although we've lost some along the way we know who is by our side no matter what. Our journey is full on and that takes all of my energy to cope with and this leaves little time to be there for everyone else. Only very few people understand that sometimes we just need to chill at home and have a day to ourselves without the stresses of going out. Those that understand and make the effort with us to be there no matter what are the ones who we will invest our time in. It's and isolating world being a parent of a child with severe complex needs and as Ethan gets older and we are less able to go out and enjoy things those that have stuck by us Through it all will be the ones we will spend more time with. 

 I love our life I really do but sometimes I wish it was easier and straightforward. Everything is a battle to access and we are constantly fighting for just the bare necessities. Just because Ethan's needs are complex does that mean he doesn't have the same right as everyone else to live a normal life and be able to access the world like everyone else? Why should life be a constant stress to access on top of an already complex life? 

Being a single parent has been a huge experience for me. There have been times where I think I can't cope anymore or times where I've struggled but seeing my little mans smiling face makes me know I'm doing ok. Being a parent is hard, being a single parent is hard and being a parent with a child with complex needs is hard, put them all together and you get a whole lot of hard and complicated. I am fortunate enough to have found a man, the love of my life, who is willing to cope with all of this. He is there for me and Ethan no matter what and excepts us both just the way we are. He would do anything for either of us and supports us through everything. We're not together all the time though and that's hard. When he's here it's amazing how much easier it is with two people to cope with everything. The stress is halved and it allows us to enjoy fun and laughter more as everything is easier. It's still full on but having someone to help and support is incredible. We're not in a position to live together at the moment because Ethan's complex needs don't allow for that because the world is still not adapted enough for him!! 

So Ethan and I are on our own pretty much most of the week. Weekends are great, but full on. Ethan goes to stay with his dad every other weekend and in some respect i'm lucky because I get respite for two nights which others don't get but I pay it at some cost as I'm on my own the rest of the time. The time I have apart from Ethan is hard and I miss him every second of that time apart. However I also use it to its full potential. I enjoy a lie in (no 4.30 starts) an early night (or a late one!) I enjoy having a shower without interruption, being able to eat my food with two hands, being able to pop to the shops without it taking hours to get out the door, washing up whenever I like without waking Ethan, going to the toilet and flushing the chain in the night or whenever (Ethan has incredibly sensitive ears and every sound wakes him), sneezing and coughing, cooking dinner and being able to wash up afterwards, turning the Hoover on first time without 2 practice blasts to stop from scaring Ethan, visit friends and family but most of all special time with my man as this doesn't happen during the week. Time is precious and I make the most of it. When I have Ethan for the weekend I love to do as much as I can with him. As he gets older we are becoming more limited to things we can do and go to so we're making the most of it while we can. Days out are special and visiting family and friends but equally time at home to chill, do physio and more importantly play and explore are just as special. As Ethan gets older more time will be spent at home and I do worry that that means missing out on visiting people and joining in normal days out but I know it can be equally as fun at home for us and people will have to adapt to coming to visit us instead. 

I love Ethan to pieces and I wouldn't change our life (apart from making it a bit easier oh and more sleep!!) because that would mean changing Ethan. Yes I would love to take away his pain and troubles but that would mean changing Ethan and if I did that he wouldn't be who he is. God has blessed me with a child full of love much more loving than other children, a child who takes joy in the beauty of the world, who sees the love in people's hearts, who rarely moans but instead enjoys life to his full potential and above all a child who is simply strong courageous and brave. For that I wouldn't change a thing. He's taught me a lot about life and how to appreciate every bit of it. Too love others who aren't the same as us. To appreciate what we've been given and to make what we can with what we've got. A lot of people should learn a few things from my son because he's one of life's wonderful creations. 

To all of the special people in our lives thank you for going the extra mile to fit around our crazy life and understanding just how full on it is and that if we had more time we would make more effort. Thank you for always being there to support us no matter what. 

Heaven here on earth

Whilst I sit chilling on the comfy chair with my orange juice, chocolate digestives, duvet and Saturday afternoon films I suddenly feel completely and utterly relaxed for the first time in months. My body aches as it begins to unwind and my head is suddenly not worrying about jobs I need to do next or when it's time to cook the dinner. I hear you thinking well how can that be Possible for a parent with a child with special needs. Well I will tell you it is possible thanks to one amazing place called charlton farm.

Charlton farm is a beautiful children's hospice one of 3 run by the children's hospice south west charity. Charlton farm in set in idyllic countryside just outside the centre of the very busy city bristol. A haven where families like us can come for respite care. All care is handed over to the wonderful hospice carers so that parents can relax and unwind from the day to day stresses of having a child with special needs. The children are entertained with endless activities. A jacuzzi pool with lights and music, a soft play area with a massive ball pool, a games room, music room, messy room, teenagers room and a large lounge to chill out with toys, a fish tank and a large tv. Children are taken out on trips or walks up the drive to see the animals. A large outside area provides places to play in the sand or swing on the specially adapted wheelchair swings or supportive swings for those more able or just simply a place to ride around on one of the special bikes taking in the beautiful array of flowers and greenery in the beautifully thought out areas providing space to chill or to explore. A wonderful willow tunnel just big enough for children in wheelchairs to enjoy walking through too. There are siblings workers to help care for siblings  of those being cared for to allow parents more of a break at times throughout their stay. 

Through out the day amazing meals are provided for everyone. A chance for parents to enjoy a rare moment of eating a hot meal whilst actually eating at the same time as their children. Carers feed the children allowing for the special moments to be had without the stress of feeding time. There are always delicious cakes to tuck into whenever you feel you need a treat. A lovely chance to enjoy a hot mug of tea aswell without interruptions.

The hospice care provides family's with the chance to be just that, families. It takes away the stress of everyday routines, appointments, medicine administration, changing pads, battling with sleep, feeding and household chores and allows families to spend the special times together. Parents can have as much or as little time with their children as they like. Allowing for parents to have cuddles or play with their children or to simply just unwind on their own. 

We have been coming to the hospice since Ethan was 9 months old. We get 14 nights to use a year. Every stay is incredibly special for us. It allows me to complete down time I need and is the only place I can truly relax and switch off. I am able to chill and get full nights sleep which is a rarity at home. I can also go for trips to cribbs causeway for some child free shopping all whilst knowing my precious boy is having an amazing time and being looked after so well. 

But we must also remember that the hospice not only provides respite care for families but it also provides the very important end of life care that is needed by so many. The hospice allows for every poorly children who are near to the end of their precious lives to come and spend their last moments together as a family. This could be days weeks or months but it is important that the family can spend those moments together. The hospice has a special feel to it and some times children fully recover when they are thought not to. But for those who don't then the hospice provides the support for the whole family with a special starborn chapel room for the child to be at peace. The hospice also helps with funeral arrangements and afterlife care for the whole family. 

There are chances to meet other families who are in the same situation. We have made many friends for life here. Families who are incredibly strong and who all face different challenges every day. Friends who truly understand what we go through every day. Without our care up here we wouldn't have made these friends and built up a support network for life. Being here also provides it's challenges showing you how fortunate you are. Some children are very poorly and it's heartbreaking to watch. Every time I am greatful for our situation and continually think of those who are suffering. The hospice provides more care and support than anyone will ever know. 

The atmosphere up here is not sad it is full of love and  happiness. Each child is catered for with the same level of love and adoration. Each child's needs are specially met and each child's wishes are met for their stay to achieve full happiness. Ethan is in his element when he's here. He is completely entertained from waking until bedtime (where he sleeps all night!!)  we both come away fully renewed but also thankful that we're doing ok and Ethan is so well. We treasure every moment we have together and our thoughts stay with those who aren't doing so well. Truly a piece of heaven here on earth. 

A new adventure

Tomorrow is a big day for us! For the last 3 years Ethan has been seeing his Daddy at my house/flat. Every Tuesday Ethan and Ashley spend the day together. It's Ashley's day with Ethan but he's never had anywhere suitable to have Ethan so I've allowed him to use my house so he can see Ethan. This has not been an easy ride by any means. At the start when Ashley first left it was one of the hardest most challenging things to do every week. To have the person in my house who left us. Yes there have been arguments and disagreements but I kept on as I wanted Ethan to build a relationship with his dad. A lot of people haven't agreed with my decision but I feel this was the best option for us even if it wasn't easy. I very rarely get a lot of time in my house to clean or tidy so my one Tuesday a week without Ethan should be when I get it all done but that's not been able to happen. Having ash and Ethan in my house every week whilst cleaning was too stressful. 

In the beginning I went back to work so this wasn't a problem I just dealt with it all which made it slightly easier. But working with a child who had 15 seizures a day and hardly slept took its toll on me. I was constantly tired, and constantly trying to fit work, cleaning, appointments and 24/7 care for Ethan all into very little time. Giving up my job was extremely hard and not a decision I took easily. I had worked hard to get where I was. I had studied hard at uni and was doing something I love with an amazing team of people. It wasn't just a job it was a career. I had to think of my health and what was best for Ethan and I. Once I gave up work things were slightly easier but with a child like Ethan who needs constant care I still struggled to fit everything in and wondered how I had ever managed working aswell! 

When Ethan was 2 we got 2 year old funding which meant he could go to preschool for 12 hours a week. As he was little I booked him in for a couple of mornings. This gave me a few extra hours to go food shopping and have a quick clean. This was good for a couple of days but it soon became apparent that being in an environment with other children meant Ethan would easily pick up germs and be ill quite often. So I once again found myself trying to squeeze everything into a Tuesday. I was getting no respite for my self during the week and with no way of resting at night as Ethan still doesn't sleep well I was getting more and more tired! 

When Ethan turnt 3 he got funding for 15 hours a week. I booked him in for 3 sessions a week. Two sessions being 9-3. I thought this was amazing and for a few sessions again I got lots achieved but as we had changed setting and The cold weather made an appearance Ethan once again became ill! He has had lots of illnesses and this has meant a lot of time off preschool for mummy cuddles. In amongst this are seizure days where Ethan needs to be at home to recover. So 3 years later I still find myself trying hard to keep on top of a poorly little man, deal with seizures, go to appointments, clean my flat, food shop and chores. I wanted to go back to uni to top up my degree but found it too much. I've added in some volunteering but still I struggle some weeks to cope with it all.

Don't get me wrong I love my life however hard it is and I'm not moaning I'm just saying it how it is. It is hard and so tomorrow is the start of what I hope is going to be a massive positive (also scary) change. Tomorrow I will have my flat free for one day and night a week. I have not had a regular night a week for me to get some rest and sleep so I am very much looking forward to this. I am lucky if I get 6 hours a night sleep. Most nights 1-4 are normal.I am shattered all the time and to have some freedom is going to do me the world of good. I will be able to clean and tidy and get things done but also have time to relax and look after myself. However good this sounds I am very nervous about my little man going! I know he will have an amazing time and will be more than well looked after but as much as it's been hard to have them here it's going to be hard without them. I've still had some control over what Ethan does and how he's looked after but I'm having to let that go and trust that everything will be ok! I know it will deep down but when I'm so in control with every single part of Ethan's routine every single day it's going to be hard to adjust. 

A lot of people judge me for not going to work but I hope I've explained the reasons behind me not being able to work. My son comes first and he needs all the care and attention he can get to help make his life as comfortable and amazing as it can be. I'm looking forward to spending time alone with my boyfriend and friends and making time for myself. Being a full time carer is hard and I need to be at my best to help Ethan in every way I can. 

Red bull, nurofen and cuddles

So the title of my blog pretty much sums up my weekend! This week I hurt my back lifting some of Ethan's equipment into my car. We have been borrowing a walking frame to check that it's the right thing for Ethan. I decided to take it into preschool for Ethan to try as they have lots of indoor and outdoor space for him to move around in. I obviously strained my back lifting this heavy piece of kit into my car and have paid the price for the rest of the week! Hurting my back has really highlighted the reality of Ethan's condition and how much help he really needs. Your probably thinking well you do it every day so why now?? Since hurting my back I've had to be careful as any lifting of Ethan has hurt. I've noticed just how much Ethan needs me to do everything for him. He is totally dependent on me for EVERYTHING. While his head control has come on and we've pretty much said he's got head control now which is a massive achievement he still is unable to sit up or stand alone. He lacks control in his arms and so is unable to play with toys himself. He can't help me to move him as he doesn't have the strength or understanding to do it. While we now have hoists at home they have highlighted just how much more space we need in our flat! As Ethan gets bigger every day and by bigger I mean taller, (I swear he shoots up every day!!), I have noticed how much harder it is to manoeuvre him. The hoists are amazing don't get me wrong but we've had a few issues with the whole starting to use them process!

 The first problem I encountered was once hoisted Ethan should be put into his chair and then moved around to the next room. While this sounds easy, in reality this wasn't the case. I have carpets in the lounge and bedrooms and Lino in the hall. The door rods to connect these carpets are to high for Ethan's chair to be moved across so I was straining my back more moving room to room than I was just carrying Ethan. This issue has now be resolved in the short time by removing the door rods with the view to try flat door rods in the future. The second issue I came across was hoisting in our bathroom. To say our bathroom is tiny is not wrong! Having to hoist out the bath and into Ethan's chair is logistically a nightmare and very hard work! There is just not enough room!! How we can resolve this is uncertain at the moment so the battle goes on! So while I've had my bad back I have been trying to use the hoists as much as I can but it's not easy! 
Ethan is only 3 and so isn't huge yet. While I need to save my back for when he gets bigger and I really can't lift him I'm also on the other hand wanting to still lift him sometimes. Not only is it quicker and easier but it is nice to be able to pick Ethan up and have a quick cuddle before he goes into his next position. I know I should be good but sometimes it's easier not to be! 

Due to my bad back and both myself and Ethan having bad colds we cancelled our plans for the weekend. We're currently fundraising for a walking frame and specialised bed for Ethan and so had to miss a fundraiser as I'd been overdoing it getting ready for it, ironic right! As I mentioned before we borrowed a walker for a few weeks. The frame is a Leckey kidwalk and I can honestly say it's amazing! Ethan loves it and as a parent I cannot tell you how amazing it is to see your child's face light up through just being able to stand and move on his own! When you dream of having children you take a lot for granted. People always say I just want a healthy child and that's all. When your pregnant you never think what if my child can't walk or move, you just dream of their future and don't think about how they could be disabled and how they may not become a well known surgeon or a nurse or a pilot. I was no different but I knew that if I had a child with special needs that I would love them no matter what and it's true. My ultimate dream is for Ethan to be able to be independent and not have to rely on me for everything. That's all. However he does this will be amazing. I can't allow myself to actually dream this dream though as it causes heartache when I know this might not happen. We live every day as it comes.  Having a walking frame will help give Ethan a small amount of independence. He is able to move the frame himself, it may be backwards at the moments, but that's great! He is so proud of himself and he loves how he can make the walker bounce up and down! 

The other thing we're raising money for is a specialised bed. Now we can get some funding for this I'm not sure how much but we still need to raise a large amount for it. A specialised bed will help me to be able to change Ethan . It will save my back no end from bending over to change him or settling him at night. The bed will be able to move up and down and tilt at the head . Ethan suffers from reflux and so has to be up quite a lot to help this. At the moment he has a few pillows under him but if we could raise his head this would be much more comfortable for him. 

Fundraising is important to me. I have struggled with health professionals and getting equipment. It's hard as a parent to have to fight for every bit of equipment that could immensely help you and your child. I'm fed up of waiting months on end for equipment which is so badly needed to help Ethan cope with every day life. I'm fed up with battling to prove why he needs things. This is why I'm taking matters into my own hands. It's quicker and believe me much less stressful! Fundraising is hard work and I know I over do it trying to organise things but it's much better than the stress of waiting! We are so greatful to all our supporters, friends and family for helping us. Without you all it would be impossible. While we are putting in our  own money we don't have it all and so cannot thank you all enough for everything you to help us.

So to end on a high note. Whilst hurting my back has been hard it's also given me the time to take a step back and appreciate  some one on one time with Ethan. We spend lots of time together but at the weekend were not often on our own at home. I love spending time with Ethan more than anything. I've noticed so many little changes in him. He is so happy and very cheeky. He passed wind and laughed! Now he does this a lot but this time he thought it was hilarious!! For a child with a neurological disorder this amazes me! Against everything he goes through he has his own character. He truly is amazing. He now gets excited when we get to our front door knowing we're home, he has to listen to one direction on repeat to cheer him up, he chooses his own snack, he look at me from the side of his eyes and smiles now, he watches my mouth when I talk to him and he smiles when I say good boy Ethan. He is on an incredibly hard journey and dispite it all he's happy. That is truly all I need to make my day. If he can smile dispite having had a seizure or no sleep well then who are we to complain. He truly is my little hero. 

Festive photo competition

It's competition time!! 

You could be in with the chance of winning a FREE Family Photo shoot, with one FREE A4 photo and digital copy, worth over £150 (redeemable at a mutually agreed time), with the amazingly talented Rachelanne Photography. Check out her work at her website http://www.rachelanneportraits.com and Facebook page http://fb.com/rachelanneportraits

There will also be two runner up prizes of photo mugs with your photo on.

All you have to do is take a festive picture! Photos must have something related to the festive period so maybe you are going for a festive drink in a coffee chain, a picture of the christmas lights being turnt on or maybe your christmas tree or christmas dinner. Be as creative as you like and have fun! You can enter as many times as you like and there is not age limit! You can be in your own photo but you must have taken the photo yourself. These are the only rules. Photos will be judged on originality and festivity!

Email photo's to tinkerbell_20@tiscali.co.uk 

Please include your name, age and contact details in the email.

Entry is £1 and can be paid through paypal with the link below. 

Competition opens on the 22nd November 2013 and closes on the 31st December 2013.
Winners will be announced on 8th January 2014.

ALL MONEY RAISED WILL GO TO ETHAN'S STARS.

A FUND SET UP TO RAISE MONEY FOR SPECIALISED EQUIPMENT FOR ETHAN.

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.