How a Tube Saved My Son’s Life

This is probably a bit of a drastic thing to say but, Ethans feeding tube has literally saved his life.

I have lost count of the amount of hours I have spent trying to get him to drink fluids.

We’ve tried every flavour you can imagine, different temperatures, thick, thin, plain, you name it we’ve tried it!!

Every time Ethan is ill he gets worse due to not being able to eat or drink.

The worry of not being able to get his fluids up was a daily battle.

When Ethan has had midazolam he is knocked out for a fair few hours. These seizures could happen anytime, anywhere.

He misses meals and therefore misses fluid intake.

Giving Ethan medicines was always an easy thing as he was so good at taking them.

However he would quite easily cough and splutter with them.

When he was knocked out on his midazolam or poorly sleeping seizures off I couldn’t get his medicines into him.

Ethan has suffered with bad silent reflux all his life.

I spent hours upon hours winding him after every bit of food or fluid.

All through the night he would need winding as he was unable to bring up any of his own wind.

It was suggested to us by the hospice that a gastronomy tube would really benefit Ethan.

I agreed and asked our paediatrician. She was only too happy to help and said its usually her persuading families to have them put in.

I was unsure of how much it would help Ethan but I am always willing to give him the best chance.

In 2016 Ethan had his first PEG fitted. Surgery went well and we spent a couple of months getting to grips with how to do gravity feeds and give him his medicines.

In the last 3 years Ethan’s tube has saved his life so many times.

I can now get in the right amount of fluid that he needs daily.

In hot periods when he needs more I can just up this without the daily battle of trying to get him to drink it with his mouth shut!

If Ethan is knocked out on meds, I can always give him his fluids and medicines while he is asleep without disturbing him.

Ethan has always been able to manage pureed food but since the peg he has been able to eat more lumps.

Surprisingly, since not having to be forced fluids, he now drinks a little bit more thickened fluids and we can now get a good extra cup of fluid in a day.

Ethans weight fluctuates so much that his weight can suddenly drop due to not wanting to eat.

We have with ease been able to give him build up milk to compensate the weight loss through his tube.

Since the tube we have been able to vent Ethan’s tummy to relieve some wind and he even brings up his own wind now too.

You see to some it may be a small thing but to us it’s huge.

I now know that no matter where we are or what stage Ethan is at I can always give him exactly what he needs to keep him well.

Special Christmas Books

Christmas time is so magical. Ethan loves this time of year, with the lights and the music. I love making his Christmas as special as possible, because after all we don’t know whether it will be his last with us.

We do lots of festive things together and every year I try to do something meaningful for him.

For one of Ethan’s first Christmas’ my mum made him a book advent calendar. We pull it out every year and each year I add more books to it to keep it exciting.

I thought I would share with you some of the books we will be reading this year and books we recommend you should get a copy of to read by your Christmas tree with a warm hot chocolate or gift to someone you know who would love a special book to read.

All of these books are tailored to our special children in different ways.

I find reading to Ethan is a time when we can escape from the daily grind and head off into our own little adventures.

1. ’10 little elves’. This is the book for our Christmas box this year. We don’t have all our children on Christmas eve so they are having Christmas pyjamas, a book, Christmas t shirts and light up Christmas spinners at the start of December.

This book is about some Elves off on a rescue mission to save Christmas.

This book is great for encouraging number recognition and counting practice. It’s a lovely rhyming story so easy to read.

Ethan loves us helping him to count using his finger to point.

2. The works have a great deal on books, 10 for £10. This is great for creating a cheap advent calendar of books! There are some lovely titles! Some of our favourites are the ‘Dinosaur that pooped Christmas’, ‘Father Christmas needs a wee’, ‘Granny saves Christmas’ and ‘One snowy night’.

The ‘Dinosaur that pooped Christmas’ is a big favourite in our house. We all have a good chuckle including Ethan!

We love stories that get us talking and laughing together!

3. We were recently gifted 3 beautiful Christmas books from an author. ‘The Special Delivery’, ‘The Christmas Next Door’ and ‘Santa’s Wish’. They are all gorgeous with rhyming words to make it flow more. Each has its own special message encouraging us to think of others.

The one that stands out to me is the ‘Christmas next door’. One of the main characters is a little girl called Lily who has autism. It shows her get over excited about her school play.

Lily’s Grandad calms her down and gives her the ear defenders to help calm her. It’s a lovely way to show a child with autism and that they can still take part in Christmas things.

It offers the chance to talk to children about Lily and also for those in similar situations to be able to relate to her.

These books can be found over at owlet press.

4. ‘The Christmasaurus’ is another one we intend to read this year. I’m not sure of Ethan’s full understanding but we have been starting to read bigger books and he seems to be following along and enjoying them!

This story is about a little boy who uses a wheelchair after an accident. It’s nice for Ethan to see children in wheelchairs like him as this doesn’t pop up much in books.

There is also a music CD available which is great for our children who love music.

5. We love all the ‘that’s not my’ books. There is a lovely set available for Christmas. These are all textured which is great for children with sensory needs.

Ethan has learnt to hold his finger out to be able to stroke and touch the feely pages.

6. Last up is ‘The Night Before Christmas’. This book was always read to me and my brother growing up. Our mum read it to us every Christmas eve.

I still remember that now and how much I loved mum bringing the story to life. I have carried this tradition on with my children so we will be reading this on Christmas Eve.

We have a couple of different styles of this book. There is also a pop-up version available too.

We hope you enjoy these stories as much as we do. Let us know if you have favourite stories too!

Mind in Overdrive

This is something I wrote when I was pregnant and wasn’t confident enough to share at the time!

I now have a beautifully healthy baby girl and there was no need for me to put pressure on myself, but I did and I want people to know it’s OK to feel worried and apprehensive.

Someone said to me don’t be one of those pregnant mum’s that won’t lift or move anything.

Now to them it’s probably looking like I’ve over reacted to this comment. But if they knew the feelings inside of guilt that I could have done more for Ethan, or that this time this pregnancy is even more special than anyone realises then maybe they would understand more.

Well do you know what I have been so totally scared this pregnancy that something will go wrong and that I won’t ever actually get to hold my baby girl or that I won’t do a good job again at growing her properly that actually I am doing all I can to protect my princess while I can.

Now if that means being extra cautious and following the rules to ensure her pregnancy is a long and fulfilling one, then so be it.

I know deep down that I didn’t cause Ethan’s problems but I can’t help still blaming myself thinking that it could have been something I did while he was inside me.

I didn’t have a stress-free pregnancy with Ethan, in fact it was quite the opposite.

I was in an incredibly stressful and emotional relationship which caused me to put a lot of stress on the baby. I was threatened and abused and had pre-natal depression. Something I don’t talk about openly. Now there is no proof that this caused Ethan’s genetic disorder, but there’s also no proof that it didn’t either.

I have put a lot of pressure on myself this time to create a baby who doesn’t have to suffer like Ethan does daily.

Now if that means I am one of those mothers who listen to all the advice about being good and not putting strain on my body, then do you know what I am one of those mothers.

I will do all I can to ensure that my baby girl has the best possible chance to grow and develop to her full potential.

The stress and worry through this pregnancy have eased a lot but will never go away.

I can never fully relax knowing that whatever happens won’t be down to something I have or haven’t done.

I was careful with Eth apart from the stress element yet things still didn’t form properly for him. So, this time being extra cautious for me is even more important. I want to know that I’ve done all I can to help give my princess the best opportunity.

Epilepsy Awareness Month

November is Epilepsy Awareness Month. Epilepsy is a big part of our family life. I have 3 children, Florence who is 5 months old, a step daughter who is 5 and Ethan who is 8.

Ethan our eldest has epilepsy. Not just any epilepsy, hard to control epilepsy.

Ethan had his first seizure when he was just four days old. It was the most terrifying moment of my life. I can still picture every second of those 3 minutes. Holding my tiny baby and him jerking and staring at me will haunt me forever. This was just the start of our 8-year journey so far.

Epilepsy controls our life. It never stops for our poor son. We were told by our epilepsy nurse that “children with epilepsy are always in a state of epilepsy.

They are either having a seizure, building up to a seizure or recovering from a seizure”. We have found this to be so true!

We don’t ever know when a seizure will appear and we can never predict where we will be when it happens.

Most of the time people won’t even recognise Ethan is having a seizure as he doesn’t present with his seizures like you would think.

Ethan’s seizures present in the following ways; increased heart rate with gasping for air and arm jerking, staring into space (absent seizure), crying with increased heart rate and eye flickers.

When you know Ethan well you can tell when he’s having a seizure.

We constantly have to keep an eye on him as it’s important to help get the seizure under control as soon as possible. Ethan has a VNS is place which helps with seizure control and we also use midazolam which is a rescue med.

As a family we spend lots of time in hospital. It’s like a day out for us! Dakota even got dressed up as wonder woman! We are very used to this but each time is still hard and emotionally draining on us all.

Never knowing whether we will leave the hospital with Ethan is a thought that never leaves you.

We don’t let epilepsy stop our lives though even though it controls it! We still have many adventures with Ethan, although some of those plans often have to be cancelled or changed due to a seizure. We live life fully as we know just how precious having Ethan is.

Unfortunately, one seizure could take him and I do not want to live with any regrets that we didn’t give him a life full of love and fun.

 

Messy Play

I always get lots of interest in all of the messy play I do with Ethan.

I love thinking up new things for him to explore with.

I have a childcare background which encouraged my love of messy play, but you really don’t need this to create easy, fun and accessible play at home.

The benefits of messy play for our children are huge. Messy play helps to encourage fine and gross motor skills. It can help movement in hands, arms and feet. It can be used to decrease sensitivity.

Messy play can help increase heightened senses.

Here are my top tips for setting up a messy play session:

1. Grab a big mat, tray or bowl. I have a range of different things I use. The ones I recommend are; tough tray, flexi tub, consortium tray and asda mixing bowls.

2. Throw out your inhibitions! Wear old clothes, cover the floor or better still go outside.

It doesn’t matter how messy it gets!

3. Choose your ‘messy’ item. They don’t all have to be wet and gooey. There are lots of dry materials that are great fun. Why not have a look on Pinterest for some fun ideas.

Our favourites for messy play are;
* shaving foam
* jelly
* dried rice, pasta or lentils
* water
* gloop (Cornflour and a little bit of water mixed together)
* aqua beads
* breakfast cereals e.g. rice krispies, cheerios or shreddies
* leaves, sticks and conkers

But really the possibilities are endless!

4. Add optional extras. These are to enhance the child’s play.

They allow for the imagination to be used.

I often have a theme in mind or use my child’s interests at the time.
Here are some ideas to add to your messy play;

* plastic balls
* bricks
* pots
* play people
* gems
* kitchen utensils
* glitter
* animals
* cups, spoons and bowls

5. Have fun – let your child do whatever they want or can do.

There really is no right or wrong way to do messy play.

Allowing freedom to move will allow your child to increase their independence and learn about the world around them.

Enjoy having some fun with your children it really is fun for all the family!

Our Diagnosis Journey

Six years on I can remember the exact moment I opened ‘the’ letter from the geneticist.

There it was in black and white. My son, my precious baby boy, had a very rare genetic disorder

It was something called ARX, aristaless homeobox disorder. Now if you’re like me you will have never heard of this! I did what anyone would do. Yes, I contacted Dr Google!

Now this didn’t help me. This condition is so rare that there are no sites that lay out the symptoms, causes and treatment for ARX. All I could find were coding sites.

I played those words over and over again in my head for days. I had searched for years for something to blame for the horrible things that had happened to my child.

I was still none the wiser.

Would my child be ok? What would his life expectancy be? Will he be able to do what other children can do? Will he live a normal life? The list was endless.

We waited an antagonizing few months before we saw our geneticist. She explained that ARX is rare and there isn’t a lot of research about it. What they could tell us was that it was not a degenerative disorder, so he wouldn’t get worse.

It is a hard to control epilepsy disorder. It can cause lissencephaly, ambiguous genitalia and cognitive impairment.

For Ethan it presents in global developmental delay and hard to control epilepsy.

We are advised to take each day as it comes.

If we can keep Ethan well and get his seizures controlled then he stands more of a chance of living a long happy life.

Ethan’s seizures are the biggest thing for him to deal with. It was described to us that he is always in a state of epilepsy.

His brain is always either preparing for a seizure, having a seizure or recovering from a seizure.

Having a diagnosis allowed me to stop looking for answers. I had my answer to what was causing all of Ethan’s problems. I could stop my search.

My attention then turned to trying to do all I could to give Ethan a full and happy life.

Ethan’s diagnosis does not define him. He is a gorgeous 8-year-old child who just so happens to have a diagnosis of a rare genetic disorder. This will not now and will never stop him from bringing a smile to everyone he meets.

5 Reasons Ethan’s Stepdad Rocks

1. He includes Ethan in everything. No matter where we are Steve ensures Ethan is able to take part.

I remember once Steve determined that Ethan wouldn’t miss out on the giant inflatable slide. I remember my response which was “Do you think we can do this?!”.

Steve was adamant we could!

I’ve never laughed so much getting up to the top of that slide! The steps were wobbly and sunk down as we walked on them. We passed Ethan between us and got to the top. Funniest thing was, Ethan didn’t even like the slide!!

Needless to say this hasn’t stopped him trying and since then we’ve been on tractors, soft play (that was another slide incident!), flying helicopters and bouncy castles to name a few.

2. He doesn’t see Ethan as any different to any other child. He doesn’t see why he should be treated any different as he’s the same as us.

Ethan gets the same treats as his sister even though he’s dairy free or he can’t play with the rubbish toy out the machine.

3. He gives the best hugs!You can just see Ethan light up when he’s in his arms.

They are thick as thieves when they are together!

They snuggle and fall asleep on the sofa, they watch Star Wars together and gang up on mummy!

Their favourite thing to do is wrestling! The sound of wrestling music can be heard throughout our house as Ethan’s carried to bed each night, followed by the roaring of his laughter.

Afterwards follows a short wrestling match where daddy usually wins and Ethan laughs his head off!

4. He is the first to leave work in an emergency.

He will no matter what he’s doing be there for his little dude.

He will be right by his side holding his and my hands. He is our rock and he provides us both with a shoulder to cry on and lots of laughs when we need cheering up.

5. He loves Ethan unconditionally. He goes through everything with Ethan daily

He sees him at his best and his worst. He never once gets annoyed and he just continues to love Ethan no matter what kind of day he’s having.

We could go on about how amazing he is, but we wouldn’t want to encourage his ego would we now!

An Open Letter to my Son on his Birthday

To the most incredible person I know, my son.

 

Next week you turn 8. A number at times along the way I didn’t think you would make.

I can’t believe that 8 years ago we were waiting for your arrival and today you have turned into an amazing superstar.

The journey hasn’t been an easy one for any of us, least of all you.

I’ve spent countless nights stroking your head after a seizure, whispering that everything will be ok.

I’ve cried with you when you’ve been sad and exhausted.

I’ve rocked you and calmed you when your body is consumed by pain.

I’ve massaged your legs to reduce the cramps.

I’ve stayed up all night and watched you breathe to make sure the next breath comes.

I’ve spent hundreds of nights lying by you in hospital watching the machines bleep checking you are still alive.

I’ve taken you to many hospital appointments to get you the right treatment.

I’ve fought for you to have what you deserve and to make your life more comfortable.

I’ve administered lifesaving drugs and helped to save your life.

I’ve held my breath when you’ve held yours willing the next one to come.

I’ve celebrated all your milestones from opening your hands to holding up your head. I’ve rejoiced with you every time you get star of the week for being so clever.

I’ve been overwhelmed with pride when you demonstrate new skills like using the eye gaze.

I’ve been flooded with excitement every time you communicate with us using your eyes or any form available to you.

I’ve shared the utter love and warmth that you give from the best cuddles ever.

I’ve been melted inside from the times you look directly into my eyes and babble away telling me all about your day.

I’ve shared your excitement over CBeebies and watched many hours of toy story holding you close.

I’ve made hundreds of memories with you at home and away.

I’ve been splashed by you in the pool when you kick your legs in excitement.

I’ve experienced the pure delight and utter calmness of just being in your company.

I’ve taken on many roles to care for you on our journey so far; nurse, carer, driver, PA, physiotherapist, supporter amongst many others, but by far my greatest role is simply just being your mummy.

You make me the proudest person every day to see your strength and determination but above all that your love of being around all of those who care so deeply about you.

Thank you for the hardest but most rewarding 8 years of my life so far.

Love mummy xx

Special Daddies

This is something I had growing up and I guess I just thought this would be the best for my children.

I guess I also planned to have a child who could live a normal life not have complex health needs.

Neither of these things happened for me. I was blessed with a child with complex needs but that caused tensions within our normal family relationship.

When everything didn’t work out with mine and Ethan’s dad I soon realised it didn’t matter that we weren’t together.

All that mattered was that Ethan had both a mum and a dad who loved him very much.

Being a special needs dad is a full-on job.

Ethan needs round the clock care and he is incredibly lucky to have two very special dad’s in his life.

Ethan’s dad won’t mind me saying but he hasn’t always found it easy to have a child with special needs.

It’s not what he had planned for his child either and it’s taken longer to find his rhythm as a dad.

This journey has bought him to be an amazing dad who loves his son for who he is and not what he should be.

Ethan adores his dad and they have a special bond.

Ethan spends every other weekend at his dads and his dad comes to put him to bed at ours once a week too.

They love going for day trips out for adventures, having splashy baths and his dad still carries him everywhere to include him in as many normal things as he can.

Being a single mum to a child with complex needs I thought no one would want to take us on as a package, but I could not have been more wrong.

I have found an incredible man who took to being a step father instantly.

He has never seen Ethan as anything other than just that, Ethan.

They love wrestling together, watching Star Wars and running around the house chasing Ethan’s sister.

He is the first person to meet us at hospital when there’s an emergency and he takes time out to come to appointments.

He is the biggest support for us and we wouldn’t have gotten this far without his support.

This may not have been the way I planned things for all those years but I could not be more grateful that Ethan has ended up with two incredible dads who both adore Ethan and have two very different but special bonds with him.

I love watching Ethan with both of them and how he giggles at all their special unique ways with him.