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.