How Preparing To Tube Feed Saved O’s Life In A Unexpected Way

It was one of those mornings when you pop onto Facebook and on their “On This Day” feature an old post from 3 years ago popped up.

I read it and realised how much had chamged since then. I remembered that a few weeks after this post the news was completely different to how I thought it was.

Below is the original post from 20th March 2015

After a long day I am finally sitting down to update on Owens videofluoroscopy. Too be honest it wasn’t the best result. Eating yogurt type foods Owen coped well, although he sounded wet after and didn’t cough to clear the xray showed he swallowed it safely. His thickened milk however was a cause for concern as the xray showed a small amount went down the wrong way towards his lungs. The reasons behind this need further investigation and they will look closely at the video in slow motion to fully understand why. Will then recieve a detailed report. Until then the plan is to further thicken Owen’s milk and only let him have small sips at a time, all that have seen Owen eat will understand this is no easy task as he loves his bottle and hates stop gaps (he gets very upset and sometimes holds his breath) but we are very committed to gently work on this. We understand that this is not the worse result we could of had. Thanks for reading and hope you have a lovely weekend.

Today I wrote an update on Facebook about what exactly happened afterwards till now. I thought I would share it here also.

***** Felt compelled to write this post after the old post popped up on my timeline*****

On closer look the results were infact much worse than originally thought.

The hard decision we made was to go ahead with Owen having a Gastrostomy (feeding tube in his stomach) I felt like I was failing him.

The waiting list for Surgery was long. During this time we had many a scary episode. This proved the need, but didn’t make me feel less like a failure. Owen was rapidly losing weight also.

***** THE FACT IS THAT THIS SAVED HIS LIFE… in more ways than one….
During the pre admission process it was found that Owen had a potentially life threatening condition. He had Malrotation of the bowel. In the most simplest of terms it means intestines, bowels are not fixed in the right place. It is a condition he was born with. The life threatening part is if it becomes volvous (twisted bowel) if this is not treated as a surgical emergency it is life threatening. We were in shock, we felt it was a ticking time bomb and felt extremely lucky to have found it in time.
Obviuosly surgery to correct this (called a Ladds Procedure) completely overshadowed Owens Gastrostomy which was still going ahead to be done at the same time.

Surgery went well. When asked the Surgeon said the bowel had some kinks in it, it had probably twisted at some point to a slight degree, but had untwisted it self. It was a miracle.
Recovery went well, despite a few set backs due to his gastronomy at the time.

Three months after surgery Owens temporary Malcot tube was changed to a Mic-key button ( a different type of feeding tube)

Coming up to 3 years on, we have never looked back. It was the best decision we ever made. (Even without the fact it highlighted his life threatening condition)
Almost immediately we saw rapid improvements not only in weight gain, but in progress and happiness.
We find it really easy to manage all aspects of the mic-key button.

At the moment Owen is totally tube fed for all his needs. Due to reoccuring Chest Infections he can not have anything oral at all, he just can’t cope. We are finally ok with this. Owen still loves the social aspect of dinner time and joins us as a family at the table while having his feed. He gets to play toys at the table and join in with all the family madness.
Some people feel cruel eating in front of him. But he doesn’t even seem to realise he is missing out on anything, so I guess it is just that person’s problem of coping woth their own guilt more than an actual problem.

Tube feeding is now just part and parcel of our family life. Things do have to be planned around his feeds. We do have to cope with stares of strangers from time to time…. especially if my bag spills over and loads of syringes roll around me. Or if they catch me attaching his extenstion tube to his Mic-key button…but their look of horror amuses me now. I am just feeding my child.

It is funny how an old post can remind you of how things were before. Show you how far Owen has come and how far you have come as a parent.

Owen thriving today

Is There Such A Thing As Hospital Anxiety For Parents?

Hospital Anxiety – Is there such a thing? I personally hate hospitals. We are so lucky that we haven’t had many hospital stays compare to others, but we have lots of hospital appointments.

  • Some appointments are just routine – Mainly myself updating the professional.
  • Some appointments are positive appointments where we hear some good news, or will find something to new to try or the best ones where we celebrate progress.
  •  Then we have those appointments, the dark ones where you find out bad news. You may receive yet another surprise diagnosis to add to the list

Those dark appointments are the ones that haunt me during sleeping hours. They overwhelm me on the days leading up to the next appointment. These dark appointments shadow over me and almost suffocate me when sitting in the corridor or a waiting room.

20171108_1418361317746550.jpgI hate hospital corridors. The smell of hospital seem some how stronger in those corridors. What don’t I like about corridors? I have spent far to many hours walking or in some cases running up and down corridors. When the Twins were in NICU walking down the long corridor to the unit made me feel sick, not knowing what you may find, what the day would bring. Or rushing down the corridor after an emergency situation. Walking back up the corridor was equally as painful, leaving your babies behind was heart wrenching. You sit full of apprehension in those corridors (or waiting room) for your child’s name to be called. The worse is being put back out into that corridor after a new development is found, waiting for a higher professional to confirm or explain a further new diagnosis. You sit there in shock trying to comprehend what you have been told, while prying eyes of strangers stare at you, as you fight back tears to keep it all together.

I hate losing myself in front of professionals. In my experience if you do that, then the Doctors treat you differently. They fear those tears. They stop being so blunt, they try to sugarcoat information in fear of having an uncontrollable parent on their hands.  I do prefer bluntly honest Doctors (But obviously compassionate and kind too) who say it how it is. These Doctors seem to also like plan. I cope much better when a plan is in place. I am a girl who likes a plan. Unfortunately Owen is a boy who likes to surprise us (Not always in a good way) who seems to always have a twist in the tale. Some days we feel ready for this or just pretend we are. Being strong in those moments is exhausting.

So as Thursday approaches, The day of Owen’s upcoming Hip abductors release surgery, I am feeling all the anxiety start to build up in my body to the point of eruption.

20171108_144345736746725.jpg*****Just to note    –    I will blog about this surgery and experience in some way ,at some point. I also truly realise that Owen’s Hospital anxieties totally trump mine and will also write about that too. I just wanted to take a moment to address my own anxieties because a) Writing  helps me b) Maybe someone else may benefit from me sharing this. Also I am not putting my anxiety on a par with those who have a medical diagnosis of  Anxiety.

 

Trying to break down what I am most worried about may help me keep it under control. 

  1. Obviously the main worry is the operation itself. Owen going under anesthetic. When he was tiny he didn’t cope well with this and went to ICU. I am trying to draw strength from his last Operation which was Major Surgery to fix his Malrotation of the Bowel (another shock diagnosis) as well as his Gastrostomy Insertion. Here he didn’t end up in ICU but to HDU. Knowing he is in a good place health wise, he has put on all his previously lost weight must be all good. Argh!!! even writing all this is making me anxious. Maybe writing before the event is not the best choice. I leave this here for now.2. Getting home. I always seem to be jinxed about getting discharged. I don’t mean when we are not ready to go home. I mean the period between when the Doctors say we are ready for discharge and the actual official discharge happening. We always seem to have delays. We are either waiting for something to happen i.e To be signed off for Feeding Pump Training. The doctor forgetting to sign the discharge form, Or something else is not ready like Equipment not being ready for home, waiting for medicines to come through. The equipment not being ready may play a major part in a delay of us coming home this time. I spent most of yesterday trying to make sure this won’t happen.3. Sleeping overnight at hospital; Those chair beds are not comfy,  Lights out a 8am, You have a poorly child to look after in very hard circumstances, You can’t leave his side as you are not only his parent but his carer and advocate. Owen’s hospital anxiety and his sensory issues go through the roof when he is in pain which is very upsetting. You also pray for nice staff. I have to say I normally get on so well with all of the staff that look after Owen and they do indeed make my stay so much easier. They are on the whole amazing, But you always do get that one.

20180203_095402_001547724542.jpgAs a Mother to four, I hate to be away from my other three girls. I always feel like I am letting them down and my heart completely feels split four ways. Organising child care can be stressful and always takes so much time and planning, despite however much is planned it still always feels all up in the air. I know my girls benefit for their routine to be as normal as it can be. With all their clubs this is a hard task. This time however Lilly (10) has been particularly upset about her brothers upcoming Hospital stay. I have had a chat with her school and they are going to arrange some counselling for her. I think this maybe a way forward in general.  It is easy to forget how hard it must be for them to have a sibling with special needs. They all have to endure so much on a day-to-day level that when changes like this come in I do worry how the extra stress of it all will affect them.

I am not sure I can write much more on this, in fear of working my head into a complete frenzy. I will keep you updated on our stay.  I am sure you all send your best wishes to Owen.

 

Sunny day’s and Inclusive Play

So Saturday was the first sunny weekend we have had in a while. The big girls were having a sleepover at their Aunties.  Alex was working in the morning and I was home with the Twins. On the way home Alex called and decided that we was going to abandon our boring plans and go to the park instead. The weather was so good and we hadn’t really been out for a while as a family, partly due to the weather, myself being ill in January and now my knee injury (Which is a lot better now, thanks for asking)

We went to my favourite park, the park of my childhood and now the park of my children’s childhood Cassiobury Park in our home town Watford Hertfordshire

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The Lion King Tree

20180217_1401531172133640.jpgA couple of years ago my relationship with this park was under fire. A grant from the lottery was going to be spent making great improvements to the park. Unfortunately at the time the improvements didn’t include any thing inclusive and therefore did not meet my families needs. I found out the original plan to install a Changing Place Toilets was to be scrapped due to budget cuts. Our beloved “toddler” playground with a wheelchair accessible roundabout in along with other sensory play equipment was ripped out without a plan to replace like with like. It was heartbreaking.

So here is where my campaigning journey began, it was personal. It was a learning experience. It was a journey (if you pardon the x-factor type pun)

I have visited the park many times, all through my campaigning, the building works and even visiting after completion. But today was the first time I had fully appreciated the magnitude of my campaigning work. (I have documented much of this journey on my blog before)

img-20180218-wa0001197705541.jpgWe arrived at the park and after putting Owen in his chair from the car realised Owen (really) needed his nappy changing. previously we would have had to either change in the back of the car, on the grass or on the toilet floor. Not today, today we simply carried on and walked towards the newly built Hub building which housed the new Changing Places toilet. In case you go, it is locked but the Lovely “Daisy In The Park” cafe also housed in the hub have the key. This took a matter of minutes to retrieve.

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Thumbs Up For Changing Places

Sometimes when a new Changing Place is opened a Grand Opening  takes place, usually including a picture of whoever has campaigned for it to be open and usually giving the Changing Place thumbs up. But not with this one. Today was the first time while using it I remembered to take my own ‘Thumbs up” Changing Places picture. As you can see it is not entirely perfect. “How lovely” I thought it would be to take a picture of the Twins. Florence did manage to do the thumbs up, But as you can see Flo was having a particularly diva-ish day. On the way to the park she did tell us she wished she could travel by helicopter. Owen wasn’t really in the mood for photos at that moment either. I mean just having you nappy changed is not something to look excited about. I think he just wanted to get back outside and play.

So Play? Another one of my small achievements.

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Using your Twin sister to wedge you in because lack of a harness has become our thing (Which they will soon outgrow)

The council had added on to the current main park with more Inclusive Play Equipment.  The council had replaced the ripped out wheelchair roundabout with a brand new one now placed in the main park. Unfortunately I did ask for a Stay in Wheelchair Swing, but this was not to be in the budget. I have got assurances that if the money was raised there was room left for one to be installed. At the time, way back in June 2017 I was all ready to start a fundraising campaign for one, But that was until the closure of my son’s beloved respite centre Nascot Lawn came to light. My energy was then thrown into campaigning to try to #SaveNascot I started a petition and got a little swept up in it all. At the same time our own home adaptions works were again in trouble. I thought my fundraising efforts may have to go into my own cause rather than a public one. I know us Special Needs Mums are supposed to have unlimited resources, but I didn’t really have the energy to take on something else. (If anyone out there wants to sponsor a Wheelchair Swing or fancies starting fundraising for this please feel welcome to.)

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Look how happy he is…. he loves having fun just a much as any other 5 year old.

I did feel a tinge of deflation while in the park that despite my best efforts it was still not enough. Apart from the Wheelchair Roundabout, the bucket swings and a couple of sensory items Owen was still nowhere near equal in the amount of fun that could be had. Until places plan from a wheelchair users perceptive, till they ask them what is needed this will never be put right. It pains me that the message of inclusive playgrounds still has not got through. It angers me how many parks are still updated but yet still are non-inclusive. As just one Mum I can’t campaign for each and every park, just like I can’t campaign for each and every building to have a Changing Place Toilet, But I will do what ever I can.  My fight for inclusion, accessibility will continue. I hope for some more positive results soon to make days like yesterday simply easy.

 

Let Owen Play!!!! (part 1)

Let Owen Play!!! (Part 2 )

How Things Can Change

Let Me Play – A Summer Of Inclusive Fun

Young Carers Day

Today is Young Carers Day.

It took me a while to truly acknowledge that Owen’s sisters Beth 14, Lilly 10 & Florence 5 were infact Young Carers. In the main this was because I am so determined not to burden them with the task of looking after Owen, that acknowledging they do help care for their brother made me feel like I was failing them. This led to feelings of guilt.

What at the time I didn’t understand was, that in NOT acknowledging them as Young Carers I was failing them more.

This is our family life and no matter how much you try and shelter the harsh truths of it sometimes you can run but you can not hide from it. It will catch you up.

What is amazing is that I never force any of them to help, but they do, out of choice, out of love.

My most guilt and upset comes about how much they have to go through. They were there at the most darkest of days, they have experienced things most adults would crumble at. Even a small temperature can throw them into a panic. But again this is all out of love.

Practically they are amazing, they know how to comfort Owen, care for him and translate his non verbal cues.

They know what to do in most circumstances. A great example of this is ss follows…. Owen has a really scary habit of trying to pull out his feeding tube out whilst on his milk. He sneakily moves his blanket covering/hiding the tube, gets his hands under the tube and forces his body into extenstion and lifts his arms up. He has pulled out his Mic-key button before by doing so, leading me to swiftly but calmly replace his Mic-key button with a new one. Yes this was infront of Lilly. Now Lilly is only too aware he may do this again. Yesterday Owen almost did, his hands were under his feeding tube and in any second he could pull it out. Lilly and I saw this at exactly the same time, both jumping into action. Lilly got their first, move his hands away and tucked in his blanket. I was so proud, but Lilly just told Owen he was a trouble maker and went back to sit on the sofa to watch TV. I sometimes feel bad that I have to ask “Can you watch Owen while I pop upstairs?” “Can you play with Owen while I cook dinner?” but that is our life. Before Owen had his tube Beth witnessed a particular bad choking episode and unfortunately has witnessed many other equally scary things to date. She has also comforted myself when I have been feeling sad or worried about a particular thing. She is not your typical teen, yes she has her teen moments but she has not got that self centred thing most teens have. At times she is completely selfless. Florence, Owens twin has known nothing else. She has from day one (literally) been through everything alongside Owen. I’m sure she will continue to fiercely love and protect him, even if at times she finds him totally annoying. Especially when he laughs when she is having a diva strop.

It is crazy to me how much they understand and how considerate they are. In all honestly the running of the house is centred around Owen and his needs. The house is full with medical and therapeutic equipment. We often have strangers in and out of the house, Community nurses, OT’s, Physio’s etc. Do they complain, No they just see it as the norm, our norm.

I can and do also feel guilty about the lack of time I get to spend with them one to one, That our life is different to that of their friends. Days out, Holidays etc can not be freely made without careful planning. But this is not my problem this is society’s problem. So all I can do to solve this one, is keep campaigning to try and change a tiny bit of the world not just for Owen, but for all of them.

In some ways I hope their experiences will help shape them into the most amazing adults. But for now I really do hope they know how proud I am of each of them, how much appreciate not only their help, but their compassion and empathy. And that all four of my children are all well and truly loved equally.

Slime Factory

As a family we are always into a craze, be it making loom bands, going out for long walks searching for Pokemon and gyms with the Pokemon Go app or in this week’s case making Slime!!!!!

The girls between them were keen to open up our own Slime Factory after watching more than enough YouTube videos of other people making slime.

It was a very messy task, that Owen also loved being involved with. (Especially the farty noises of the glue bottle and the farty noises of the end result when you squish it between your hands) I could point out that it is a great sensory activity and the end result is also a great activity for occupational therapy.

But the best point was that all four of my children  ( the 4th being 14 is camera shy) were sat around the table, all giggling and making slime together.

*** Just a quick note to say this is not editable, so probably not the best idea if you have someone who is likely to put the slim in their mouth.

Here is our recipe and method incase you want to try and open your own slime.

1 cup of PVA glue

1 tsp of bicarbonate of soda

1 cup of shaving foam (optional extra If you want ‘fluffy slime’)

Food colouring

Contact lens solution (Important point the contact solution must contain boric acid)

You will also need a something to protect your table and your clothes, mixing bowls, spoons or something to mix it with (we used kebab sticks) and Tupperware boxes to keep it in.

  • Firstly pour 1 cup of PVA glue into the bowl.
  • Add 1tsp of bicarbonate of soda & mix
  • Add the food colouring & mix
  • Add shaving foam now if you want & mix

  • Now The magic… Add the contact lens solution a tiny bit at a time. It will start to come together and get ‘stringy’
  • Now get your hands in and knead. If it is really sticky keep adding the contact lens solution until you get the desired texture. (Not to much)

  • Now if you want you can add the glitter and knead in.
  • Now the slime is ready to play with.

Good luck with the mess and just have fun.

The Harsh Lessons of 2017

2017 has been a real tough year and I have had to learn some real harsh lessons along the way.
I hope the lessons learnt will go someway to ease the ongoing struggles and face the new challenges of the year ahead.
I won’t go into the scenarios that caused these lessons to be learnt as a) that would be a very long post b) It is not just one episode or event that led to them but various things throughout the year. Below are my lessons learnt or my resolutions if you like which I will try to keep to.

  • Keep going. This year has proven that one person can truly make a difference. Surprisingly I have found that person could infact be me. My campaigning has led to new local Changing Places and a push torwards inclusive playgrounds. Next year I have to be braver in my campaigning and to really put myself out there more. When i do achieve something I need to stand up and be proud in all I have achieved. I promise myself I will be louder in celebrating those achievements. Deep down I know I have made a difference and I can keep doing so.

  • Wrap yourself around those who truly care.

Sometimes you find out that you care for people far more than they actually care about you.
What do you do? Do you try and care less about them? Not caring is not in my nature so I have been finding this hard. Or do you just try and let go.
You can lower expectations of others to save the constant feeling of being let down. You got this anyway you always had done.
You can’t make people who have done you wrong say sorry. And you can’t keep forgiving their continuing mistakes if they have not yet realised the impact of them thereselves. Sometimes kindness comes in the most unexpected places. In life you will come across a few gems and you will be so happy have such people in your life. Some people are just toxic, these are not your people and not worth your energy.

  • I need to make more time for those that truly matter.

Continue to make time for each of my children individually. Not to let them get lost in all the chaos. Value each one as they grow into theirr one wonderful person.
Remember to be a wife not just a mother and carer. But mostly remember to find some time to be me. I have promised myself to take some risks this year. Also to keep learning new things.

  • Don’t feel like you have to change for anyone, But be prepared as sometimes change in yourself will just happen, and sometimes people won’t

Trying to toughen up to match up to others just didn’t work. They say nice people finish last, this maybe true, but I rather be last in the race, then storm through life with a heart of stone and a cruel tonuge.
Do what feels right in your heart. Also Don’t expect every one else to have the same view point of the world as you.

  • I need to make more time for those that truly matter.

Continue to make time for each of my children individually. Not to let them get lost in all the chaos. Value each one as they grow into theirr one wonderful person.
Remember to be a wife not just a mother and carer. But mostly remember to find some time to be me. I have promised myself to take some risks this year. Also to keep learning new things.

  • Listen to yourself more.

Take your own advice. I tell my children to

Be kind, Always try your Best and don’t be afraid to take risks.

Then it is simply; Cry Less – Laugh More, Be more organised and learn new things.

Also to be more consistent with writing and learn the art of blogging. I promise my next few posts won’t be so sour. Infact I am already planning my next one which will be a round up of 2017 in a far more positive way. It is just that if I only celebrate the good, I don’t think it will be truthful.

Thank you for bearing with me while I get this one out of my system. Thank you also for all your support. I really do hope you all have a Happy New year and in harsh times you also can draw upon past lessons learnt.

The Boy Who Loves Christmas

20171202_18171952637055.jpgOne of the things we always wonder and worry about is how much of the World does Owen understand.  Over his 5 years of life he has taught us despite his severe disabilities  he understands the world so much more than he is able to express, because of this we never assume that he will not understand something and try our best to make sure he is included in everything we do. With Owen we are very much the experts of thinking outside the box, planning and researching and adapting things that we do.

 

Owen loves Christmas, he really does. The word Christmas makes him cackle with delight. Owen loves the sensory experiences Christmas can bring. Christmas Lights are of course a huge hit. a room full of lights is his happy place so Christmas means lots and lots of happy places. Another thing Owen loves about Christmas is the get together’s and the attention he will get, Owen is a real sociable little boy and of course a flirt.20171209_1738181740588356.jpg

20171205_141542501911686.jpgOwen took part in his Christmas play (I remember being concerned when I knew Owen was going to have to go to a special needs school that he was going to miss out on all things like A Nativity Play and Easter Parades, how I was so wrong) Owen was a carol singer, he danced along to the music and then his part came up during his now favourite Jingle Bells. Owen was to push his switch to activate it to say “hey”. Unfortunately he was so excited about the song his arms were in full extension so his timing was off when he eventually found his switch button. Though when he found it he made great use of it, constantly pressing it from the sidelines throughout th e rest of the play. He thought he was very funny.

20171212_1539311238825379.jpgRecently in the run up to Christmas we had snow. Owen did enjoy coming out and watching his sisters build a Snowman for a limited time, before he got too cold  But what Owen enjoyed the most was the ride in his chair after picking his sisters up from school. (Owen had another snow day) It was really icy. This led to some very tricky and tiresome driving from mum but a very bumpy ride for Owen who squealed and full belly laughed all the way home.

One thing Owen can not do is eat Christmas dinner due to being fully tube fed. We make sure he does not miss out and always has a place at the table, like I said he is very sociable so wants to join in with that side of it. Owen has toys to occupy himself with while we are eating. Sometimes guest feel a little awkward eating in front of Owen, but I really don’t think he is worried about that side of things, he would most definitely feel more left out away from the table, Crackers though are a work in progress, Last year we had to do all our crackers at the same time while we put Owens ear defenders on.

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This year we braved it and took all the children to meet santa. After many days trying to find somewhere Wheelchair accessible, Where Owen would get some enjoyment from and not over the top expensive we settled on booking Aldenham Country Park,This was a fab (all be it rainy and cold) day. Santa was fantastic with his great big beaming voice who took take pleasure in teasing my teenage daughter who only came in to shelter from the rain. Owen was a little worried as he was so loud and his bottom lip did come out a bit when Santa made us all hold hands to detect if we had been naughty and nice followed by him shouting bang as a joke, A joke Owen didn’t find very funny, but he soon settled down. Owen really enjoyed looking around the farm afterwards, Owen simply loves animals. I really think we will go back again next year. Hopefully santa will remember not to make a sudden loud noise.

So far the build up to Christmas has been great. I really hope Owen and my whole family have a truly magical Christmas. I may have gone a little mad present wise n the Children, mainly because they have had a tough year and some things they have had to experience this year are just to harsh for their little minds. I wanted to creat a point in te year where everyone can just relax and enjoy themselves. So I have better get on with the Christmas Preparations as I am cooking for 10 tomorrow.

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So we all at Flourishing Warriors wish you A Very Merry Inclusive Christmas.

 

Reminders of “Come What May”

Yet again Facebook had thrown up another one of those “On This Day” pictures. Yet again my emotions were mixed.

The now year old photo is a beautiful one. A photograph capturing a lovely moment between Father and Son. The Photograph was taken by myself and at the time exact time I snapped the shot I was truly all wrapped up in the emotion of the moment.

It is just that looking back at the photo it reminds me why this photo was taken, not ‘Why did i take a beautiful photo next to a beautiful fountain’ I mean it reminds me why we were even there?

The reality is that this photograph was taken in Regents Park. We had decided to take some time out and have a walk around the park to try to clear our heads after a very long and stressful hospital appointment. The appointment was at The Royal Orthopaedic Hospital London. We were there due to a newly discovered ‘problem’ had shown up via Owen’s annual hip x-ray.

The majority of children with Cerebral Palsy develop spasticity, in which their muscles tighten involuntarily, causing stiffness. Spasticity in the muscles around the hip places abnormal forces on the hip-joint, eventually causing the hip to dislocate from the socket. It is therefore very common for children with Cerebral Palsy to develop hip disorders over time.

Owen’s left hip wasn’t fully dislocated but had moved slightly out of the joint. This is  called “Hip Subluxation” also called a “Partial Dislocation”. 20171026_164604410829793.pngAfter a day of waiting for a more senior consultant to see us it was decided Botox, or a lesser operation to release the tendons would not be beneficial. Major surgery would most likely be needed. Owen was not in pain and at the time was not affecting his quality of life so they and we agreed to leave it for now as the hip was only slightly “Out” and it may well just stay in the same, slightly “Out” position. They said major surgery is on the cards but not at that present time.

In ambulatory children, hip dislocation can be a detriment to walking. In non-ambulatory children, sitting balance, skin breakdown and diaperring can be hindered by hip dislocation.
We have towards the end of this current year noticed a difference in Owen regarding his tightness in his leg muscles, his legs are crossing more and he just doesn’t look symmetrical. We are really fearful what our next upcoming ‘hip’ appointment will reveal. We are trying to prepare ourselves for the likely fact that Owen will need major surgery to correct this, But I am currently also not trying to think too much about it as it sends me in a complete panic.20171026_1650381087182585.png

This year of waiting, hoping and seeing has been hard. Owen is non verbal and we worry we will miss him giving us clue that he is in pain. Every time he has a period of unexplained crying or seems in pain I fear it is his hips. Recently he has quite a lot of illnesses, At the start of them I never really know what they are about, but I am always on full alert whether he is in pain due to his hips or whether his bowel malrotation has re-appeared (despite having surgery to fix it). It is strangely a relief that it was the beginnings of another familiar chest infection that made him so upset. The feeling of relief is short-lived as you then start to panic that this chest infection will be THE bad one. Despite Owen being out of school more than in school this last term with sickness bugs, chest infections and feeding issues we do feel extremely lucky that all this was treatable at home, especially after hearing some recent really sad news. We are always forever thankful and never take anything for granted.20171026_164919160483415.pngHaving said that the thought of having another hospital stay is playing heavily on my mind. It is a fear that never goes away. Living with the thought that at any moment for many different reasons you child could end up in hospital means you can never fully be free.

I realise to some this blog post is almost a year too late, I have been sitting on my worries regarding his hips for a year now. I sometimes, when I have no answers find it is easier just to keep your worries to yourself. I almost feel like by not telling people I am protecting them. The fact I may need support and comfort does not come into it. My whole focus is Owen and trying to do the best for him.  I hope what ever the outcome of the very near next appointment, it will be what is best for Owen. I fear the truth of what that may mean for him, But I know whatever it maybe I will be by his side every step of the way.  “Come What May”

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Why ASDA Know That Mum’s Are Always Right

So if you follow my Facebook page you will have seen I recently posted a little tease about an upcoming Changing Place local to me.

Well here I can reveal the location of this Changing Place will be…

(Incase you haven’t guessed from my title)

ASDA Watford!!!!!!

As a mother of four, Supermarket shopping is no easy task. This is made harder with a disabled child and a complete lack of facilities. For both of those reasons this is why I always do grocery shopping online. Nowadays Supermarkets now are like mini shopping centres. You can buy anything from bread and milk, to TV’s and PC’s all while picking up a brand new outfit or having a bite to eat in their cafes. Being restricted to just shopping online or just limited to popping in means you get to miss out on so much of what Supermarkets have to offer and in turn they miss out on your cash.

So how did it all come about???

Over a year ago, I contacted ASDA and sent them my usual information trying to ‘convince’ ASDA that toilet floors are not good enough and Changing Places is far better. ASDA were very pleasant to work with and took my views as a parent/carer on board. ASDA said they were “Very keen” to install Changing Places and were planning to “Roll them out across the country.” ASDA did however state they could not tell me the timeline of when my local store would be getting one.

Fast forward to last month. I went to my local ASDA with my children including my disabled son to get the children’s last minutes bits for school. Let’s just say it didn’t go to plan and we ended up just buying whatever was in the basket and rushing home.

A few weeks after I noticed ASDA were doing alot of building work so I emailed ASDA to ask if they were putting in a Changing Place facility also explaining about my previous trip which left us exiting early. I got the reply they were refreshing the toilets but NO Changing Places were to be installed. Not happy with this, I emailed a formal complaint to the CEO.

I very promptly recieved a reply. It was rather shocking to read the reason why they were not installing Changing Places. It was because The Official Changing Place Campaign advised them against doing so. Can you believe it? ASDA told me they were advised as Watford had a number of Changing Places in town
one being 1.2 miles away ASDA didn’t need to install. How can a campaign like Changing Places, whose sole purpose is to get Changing Places installed, give such damming advice?

As a parent/carer campaigner for Changing Places. I have helped get Changing Places in my local town of Watford Hertfordshire. These include Warner Bros Studio – Harry Potter Tour, Watford Football Club and Cassiobury Park. I do this because I believe Changing Places should be as readily available as much as your standard disabled toilets. I put all of my very rare bits of spare time into campaigning to get businesses, attractions and just basically anywhere suitable to install. I just feel so deflated and that all my previous efforts were going to waste.

I wish I can say this is the first time this has happened, but sadly not. I have had the same response from Tesco and John Lewis. I also know others that have been told the same.

Luckily for me, despite Changing Places advising otherwise, ASDA listened to myself a parent/carer and a valued customer and decided to go against advice from Changing Places and just do the right thing. ASDA now are going to install Changing Places as part of the current building works.

Campaigning for Changing Places takes so much time and hard work. I often think about giving up, But the bottom line is (no pun intended) my son needs them and I can’t just sit back and do nothing, especially after I have seen the positive results of my hard work. So for now, I will take a little break from campaigning while I think what my next steps will be and just look forward to the opening of yet another Changing Place for my town which I know will not only be a great benefit for my son but for the wider community.

I am very grateful that ASDA for just doing “The Right Thing”. ASDA showed a great “Commitment to customer service”

“Making sure we have the correct facilities in place to meet all of out customers needs”

ASDA listened to one Mothers voice whose son needs these facilities, who lives with the upsetting and degrading effects of not being able to access such facilities on a day to day basis. They listened to a Mother over the so-called ‘experts’. You can’t ask for more than that. I hope I have not put any campaigners off from keeping up with their hard work. I hope I have still managed to encourage other Parent/Carers also ask for the “Correct Facilities” despite my difficulties.

Inclusion and Accessibility should not be seen as a extra but as a given.

NHS Nascot Lawn Respite Children’s Respite centre ‘Saved’ as Lennon’s Legacy.

 

SAVE NHS NASCOT LAWN CHILDRENS RESPITE SERVICE’S PRESS RELEASE

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NHS Nascot Lawn Respite Children’s Respite centre ‘Saved’ as Lennon’s Legacy.
On 28th September 2017, parents of NHS Nascot Lawn children received the welcome news that Herts Valley Clinical Commissioning Group has set aside their decision to cease funding respite service at NHS Nascot Lawn.
Lennon Ruffles was a patient of Nascot Lawn who sadly died on 3rd August 2017. Lennon and his family played a vital part in campaign to ‘Save Nascot Lawn’. Lennon’s Mum, Nikki said: “We are overwhelmed by the news this morning, had Lennon been able to communicate, his dying wish would have been for Nascot Lawn to stay open, for all his friends.”
A judicial review was due to take place at The High Court, Holburn on 3rd and 4th October. At the judicial review, the High Court was due to decide whether or not the decision made by Herts Valley Clinical Commissioning Group to withdraw the funding to NHS Nascot Lawn had been taken legally.
Irwin Mitchell, the legal team acting on behalf of parents, are still working through an agreement with Herts Valley Clinical Commissioning Group’s legal team, but the commissioning group has confirmed that they will now carry out full family and public consultations before they make any decisions about funding in the future.
Parents received letters back in June informing them of Herts Valleys Clinical Commissioning Group’s  decision to withdraw funding to NHS Nascot Lawn and that the respite centre would be due to close on 31st October 2017.
Since then, parents launched a campaign to ‘Save NHS Nascot Lawn’ which gained considerable media support from both radio and television stations, including the BBC and ITV and a great deal of newspaper coverage from local newspapers including The Watford Observer and Herts Advertisers. Parents also received backing from local councillors, including Mark Watkin, Nigel Bell, Asif Khan and Sara Bedford.
15,000 members of the public backed the campaign through a public petition with many more sending messages of support on social media. The campaign was even mentioned in The House Of Lords by Baroness Sal Brinton, who went on to arrange a meeting with parents, Lord O’Shaughnessy, the Health Minister and herself at the Department of Health.
Parents would like to thank everyone involved in helping to turn around Herts Valleys Clinical Commissioning Group’s decision to cease funding. They also wish to express their excitement and happiness at the decision, but do so cautiously. Parents have still not heard a response from Herts Community Trust – the service provider, and the staff at Nascot Lawn are still unaware of where they currently stand. Herts Valley Clinical Commissioning Group can of course now undertake public consultation in regards to the position of NHS Nascot Lawn, and if and when that happens, the campaign will continue to need as much support as possible.

#SaveNascot #NascotArmy #ParentPower #LennonsLegacy

Please keep signing and sharing our petition below

https://www.change.org/p/save-nhs-nascot-lawn-children-s-respite-services?recruiter=224336991&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition

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