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.