Sepsis Surviour

I haven’t blogged in a while, I haven’t felt ready. But it is Sepsis awareness day and I could not let that pass. I have had a ‘blog post’ written up by pen in my notebook that I wrote or scrawled not long after our journey with sepsis came about… But I could not post it. I could not bare to even type out the words. Today I got reminded that the reason I wrote down our journey was to share and hopefully raise awareness, hopefully get the word out of the signs and symptoms to look out for, to get one parent or care giver to ask when a medical proffessional in similar circumstances we were in just to ask… “Could it be Sepsis?” I so wish I had the power of knowledge to ask this. I knew something was deeply wrong but I felt dismissed. Here is to hopefully saving a life.

Let’s go back to the beginning of the year February 2019.

Owen our son then age 6, Who has Cerebral Palsy and other complex medical needs, is prone to being ill particularly during the winter months. He gets poorly often but mainly can be treated at home.

We knew Owen was becoming unwell as he was not sleeping at all at night. I spent many hours cuddling him on the sofa during the small hours.

By the Wednesday I knew he had the beginnings of a Chest Infection so took him to the GP to get his usual dose of antibiotics ‘Amoxicillin’. Soon diarrhoea began not uncommon while he was on aantibiotics so I stopped feeds. Owen is tube fed through his gastrostomy (a tube or in his case a ‘mic-key’ button that goes straight into stomach) Owen can not eat orally at all. So like I said I stopped feeds and started him on diarolyte to keep him hydrated.

During the early morning Owen seemed to be worsening. He vomited dark green bile and I hadn’t had a wet pad for 24hrs which is not like him. I decided to make another GP appointment stating all the new symptoms that concerned me. The GP was a locum and said it was hard as he had never met Owen before and didn’t know how he was normally. I felt he was saying because of his disabilities the fact he was quite lethargic could just be ‘his normal’ I said it was way out of character and I was really worried. I have handled many chest infections and this just didn’t feel right. The GP assured me it was all due to his chest infection and to just carry on with the antibiotics. I asked about Owen becoming dehydrated suggesting I should carry on wth the diarolyte… The GP said ‘Yes that’s a good idea’ I felt dismissed and vowed to take him to A&E if he didn’t get any better real soon.

During the next two days Owen did make a little improvement so I started him back on his feeds. I was hopeful again. Then Sunday came and he vomitted black sick. I panicked and we set off up to A&E.

A&E was busy. We have a green card so we get seen as a proirity and were seen quickly. We were told that they would increase the use of his inhaler that he has from 2 puffs to 10 every hour or so and see if this helped. No beds were avaliable so we sat in the waiting area with Owen in his wheelchair. Owen’s chest was much better sitting up so this was not right but ok. Time moved slowly between observations taking place, still in the waiting area, more more of his inhaler was given. The Greatest Showman film played on the DVD player on a loop. The first time was great… It is the only film Owen will sit through… but by the third time of watching it, it was just too much. Next a Nurse came and said we were going to moved up to the Childrens ward for closer observations.

Still having his inhaler, the consultant sad when he could manage 4 hours between using his inhaler we could go home. They said it too the little girl opposite so it must be common practice.

It was getting late, Owen was still needing his inhaler every 2 hours. A new Consultant came and said he would rather keep Owen overnight. We agreed. Alex went to get myself and Owen an overnight bag. Little did I know what was to come.

Ok so the next part maybe upsetting, some may not want to read much further… but it is all part of the journey ad to leave it out will be little just how dangerous Sepsis can be.

Short version we were the next day bluelighted to St Mary’s London Hospital PICU spent 2 1/2 weeks there another week back at our local hospital it was many months till he made a full recovery but he did.

If you want to know the full story read on.

Part 2.

Hospital beds and Owen don’t mix, he has a full sleep system at home so getting Owen positioned comfortably was a mission. Alex did bring in his head support cushion but this still didn’t help much. By 2am I gave up and sat him back in his wheelchair. By 3am Owen got sleepy so I again tried him in his bed to settle him propped up with as many extra pillows the nurse could find. He didn’t get too much sleep with having Obs done and his inhaler given through out the night. Owen hates having his inhaler he protests so much thrashing his head about to avoid the spacer mask.

At 7am medicines and another round of hs inhaler were given, which again made him cross, again he was protesting, so full of fight. Owen soon dozed off after this.

At around 8 to 8.30ish someone handed me a tray with tea and toast on it, it was then I realized I hadn’t had anything to eat for so long now. I settled down on my pullout bed to eat my breakfast. I looked up at the bed as I took a bite & noticed Owen’s eyes were open. “Oh good morning Mr O I didn’t know you were awake” I said to him. That was the start of our hell.

Owen just stared back at me with such a vacant look, “Owen, Owen..?” I called as I jumped up to touch him, he was freezing. I saw the big red button was about the press it then heard foot steps behind the curtain, it was the Matron coming to say hello. Owen then started fitting, not whole body convulsions… just his leg shaking and eyes rolling. I actually can not remember what I said to her, I can’t remember who pressed the red button, I just remember one second I was standing next I was pushedalong to on the corner my bed trying to hold Owen’s hand as doctor after doctor, Nurse after Nurse came. With my free left hand I grabed my phone and sent a text to Alex. “GET HERE ASAP”

Soon Owen’s bed was being pushed out of the ward into the high dependency bay, me still holding his hand or rubbing his head. That’s when I and. Nurse next to me saw a couple of small purple freckles that were not there a few moments ago. Sats were dropping they couldn’t get a line in he was shutting down. I saw things I really shouldn’t. I think they forgot I was there. At some point a member of staff led me away. I called Alex who was on his way, he had literally banged on the classroom window to get Florence in the class before school started as he recieved my text, ran home and jumped in his car. He was desperately trying to get here but was stuck in traffic. I worried if he would make it in time.

I went back to Owen, they wanted to move him to another room, he needed to go on the ventilator. Alex came and we were shown to the parents room while they put him on the ventilator, a member of the carer team made me a cup of tea. I could not drink it but felt bad to reject it (Weird where your mind goes… I also felt rude I had just left my tea and toast thrown across my bed) so I just held onto my tea,, but I felt too weak and started shaking so I had to ask alex to take it away.

We went back to see if we could be with Owen. We were told The CATS team (which stands for Critical Acute Transport Service) had been called and we were going to get transferred to A London hospital with a Paediatric Intensive Care Unit, but they couldn’t tell us which one till they got here.

Wee stayed for ever, the room was packed full, our little man just lying. Owen was premature and spent so many weeks on a ventilator as a tiny prem baby it all felt so familiar, but so so wrong this was our boy, our cheeky full of smiles and character boy how had this happened?

Owen was now ‘stable’ enough on the ventilator for us to make our way back to the parents room to make various calls to family. I called my sister first, she said was coming right away to look after Owen’s sisters who were at school at this point. I didn’t even need ask.

The CATS team came. It was a long process of getting Owen ready for transport. He also needed a MRI scan before he left due to having his seizure.

Both the CATs team and All the staff at our local hospital were truly amazing that day.

The next few hours were a blur but then all of a sudden we were in the back of an ambulance speeding up the M1 torwards London. Blue lights flashing, sirens blarring. My anger rose a few times when the ambulance had to use the horn as someone wasn’t clearing the way . We arrived at St Mary’s Hospital Paddington London so fast.

I have never been to this hospital, I had no idea where we were. By this time is was dark so mad it even more mysterious. We were led to the PICU met the staff and then led to the parents room where we waited for Owento be transferred from the CATS tea equipment to the hospital equipment.

Shell shocked we were greeted by a lovely family, who tried to comfort us and gave us reassurances that this was the best hospital. 20mins in another parent came in, whose boy had just been transferred also. The family again comforted her thesame way had done us. The lady started to cry feeling grateful she was no langer alone soon we all were crying. The more we talked the more we all realised how much we all had in common, all 3 of us had children with Cerebral Palsy all were fighting for their lives.

That parents room became home. The staff and other parents became so famili like family. We were in a bubble that none of us wanted to be in. The PICU hospital has a charity that puts parents up in a hotel literally down the road from the hospital. This was such a relief. Very late at night we made our way to the hotel. All we had on us was one holdall that Alex had packed for me the nght before with a few bits on for me and Owen. The CATS team gave us a littlebag they give to all parents with a small fold up toothbrush, tiny toothpaste a bottle of water and a couple of custard creams. That is all we literally had with us.

Owen spent just over 2 weeks in St Marys, the staff were amazing. Over the frest few days we found a M&S and a superdrug and managed to buy a few supplies from there. We felt so alone, so away from the world. It was just Alex and Me sitting at Owen’s bedside again seings things no parents should. Our girls were at home, we tried to facetime amuch as we could. Timings for this were hard. Sometimes it was impossible leave Owens bedside, sometimes we couldn’t let them see our red raw eyes. It was so so hard.

We moved back to our local hospital andspent another week there. This time the girls could visit. Things were looking up and home was insight.

Owen did go home, but it took months fo him to recover.

I am glad to say he is more or less fully recovered. Alex and I are still dealing wit the effects of our trauma. I believe PTSD is real in circumstances like ours. Tt is why it took me so long to write this. I hope someone read this.

But mainly I hope someone reads the sigs and symptoms and remember them i they feel they need to.

I hope it helps.

Sometimes it is the small things that create big emotions.

Feel anxious and sad today… why? Because we are having the handrails fitted to our new ramp. I mean the ramp was done many months ago and we are grateful for it…. but today with addition of the handrails it just selfishly got to me.

We are nearing the end of our accessible bathroom extension build and adaptions. It has been beyond stressful, long (4 years in the making) but also exciting, it will be such a major relief when it is all finished… so why do I feel this way?

Same feeling crept up on me last week when we test drove our new potential Wheelchair accessible Vehicle. The sensible part of me understands it will give us more freedom and it is what is needed, But I also know it will make life more difficult… we know we wont be able to fit in many shopping centre car parks… parallel parking will be a nightmare because of the lenght of the ramp and just a few other things.

The end of the month we have a Wheelchair services appointment where we are expecting to say goodbye to Owen’s Snappi special needs buggy for a ‘proper wheelchair’ as Lilly calls it so it just all part of the same really.

Owen is 6 and growing up fast therefore his needs will just keep growing too.

I guess in the main part we have got away with living our ‘typical’ family life in a non accessible world, but feel we are on the edge of a reality check to how disgracefully inaccessible the world really is. Thing is I know all this, I campaign for accessibility and equality so why do such small changes seem so unsettling?

Does anyone else find the seemingly small things create the biggest of emotions

We need more Lilly’s in this world

I haven’t blogged in a while, life just took over and my desire to ‘share’ went for a while. I have to admit I missed it.

I believe blogging or at least writing things down is good for me, so here I am back at it.

Today I am just going to write about what happened this morning, which kind of follows on from my last blog post all the way back in August.

https://flourishingwarriors.com/2018/08/22/you-dont-look-disabled/

My 11 year old daughter Lilly was ‘helping’ me get Owen into his Snappi chair ready for his school bus. Helping being holding onto his straps as I lift him in so he don’t sit on them (Owen likes to push out, arch his back to be a little naughty when getting in his chair so losing the straps can mean lifting him in and out again to re position him) She likes to do this, I don’t ask her she just comes over and helps if Owen is being particularly ‘cheeky’ that morning.

Seriously can not wait for the hoists to be fitted (building work currently in progress) this struggle is real.

After Owen was in his chair Lilly turned to me and said “When is Owen getting his proper Wheelchair?” “Soon” I said, explaining we were just awaiting an appointment to be sent through after our referral. “Why?” I asked. She replied “Just because when Owen is in his proper Wheelchair, people will understand he is Disabled and they will be kinder to us”

We currently have a Snappi special needs buggy and despite it being classed as a wheelchair it often gets mistaken for a standard buggy, this can cause lots of ‘miscommunication’ let’s say.

“At least we will be able to get on a bus easier” Lilly added. Their has been many times when we couldn’t get on a bus as baby prams were in the wheelchair spot, or times another wheelchair user was ahead of us in the bus que (which there is nothing you can do about that) other times we were ahead of another wheelchair in the que – this caused a bit of a stir as the wheelchair user insisted I should fold down my buggy so she could get on (I obviously can’t) I politely asked the bus driver if we could simply both get on as there was plenty of room on this particular bus, luckily he agreed and the other wheelchair user was ok with this. Another time we were already on the bus and another wheelchair user wanted to board but the bus driver wouldn’t let them on despite me again asking. Which lots of harsh whispers tones from behind me from the other passengers I explained to the other wheelchair user and the bus driver my son had Cerebral Palsy and was not in a regular pushchair, we couldn’t get off as we would be stranded. I then turned and explained to a bus load of people. Humiliating and uncomfortable. All this witnessed by Lilly.

We had a similar chat, when she got upset when parents in a waiting area at one of our clubs were in her words “Rude to us”… “They never give us room and then they just stare at us when Owen gets upset or makes a noise” I asked her how this made her feel ” She said “annoyed” and “Sorry for Owen to be treated this way”.

I asked Lilly do you feel embarrassed when I turn warrior mum and have to get cross at times or sometimes simply have to explain.

Lilly replied

No I get cross too!!!! Then I feel upset for Owen. I wish everyone would just see him as Owen. He is disabled and he can not help this. I wish everyone would just see him as a cheeky little boy who just is in a wheelchair.

Trouble is Lilly truly believes that when Owen is in his ‘proper’ wheelchair, people will understand, the awkwardness will end, the stares will stop and everyone will just be kind to us. Unfortunately I am not sure this will happen. How do I explain this to my kind, empathic, quirky, overly chatty 11 year old? I wish their were more Lilly’s in the world.

You Don’t Look Disabled…?

Recently I have read alot of blog posts about those with ‘invisible disabilities’ feeling or experiencing that others not believing they actually have a disablitily. This can be when accessing a disabled loo or parking in blue badge even though they are fully entitled and have displayed a blue badge in their car. This is upsetting and so wrong. It did get me thinking about the ways people perceive those with either non visible and visible disabilities. Is there really much of a difference in the way you are treated?

In my own experience of having a son with severe physical disabilities and some disabilities that are not so visable we have our self experiences similar circumstances. It seems that even being in a wheelchair is not proof enough.

The Summer Holidays have shone a light on how much we as a family have to somehow prove my son is disabled

Constantly having to justify your disability be it ‘visible’ or ‘invisible’, be it a physical disability or a chronic illness in my eyes it is simply not on. It is just not nice and sometimes the way in it is done can feel degrading. I often wonder what the questioners must think? Do they seriously think I would lie that my child is disabled? Who would do that? I guess some people must do… Am I naive in thinking otherwise? there must be a real need for these constant checks. Although I still reckon far more people have disabilities than those who actually lie. So if that’s the case why ‘punish’ those that have.

Last time we used a Changing Place just saying he was disabled and needed to use one was not enough to gain entry. I constantly find myself going into my now well rehearsaled spill of diagnoses normally reserved for meeting new medical experts. I don’t think it is necessary to relay all this to ‘Fred’ in his office through the intercom. Then for ‘Fred’ to make a judgment whether you are worthy of entry. Popping to the toilet for everyone else is just plain easy but for others it is a full on mission. Firstly finding a Changing Places Toilet is near impossible with a little over a 1000 across the whole country. When you think you struck gold and found one the next mission is to gain entry. Hunting down a key, explaining to ‘Fred’ why your son needs Changing Places and no not the baby changers, can take 200x more effort. How is this equality. Yes I know many of you will say “Oh I rather they check then let any one in….” but checking can feel humiliating, your privacy truly invaded shouting out my son is doubly incontinent is just not nice at the age of 6, But what about when he reaches say 16 . I also wonder how an adult with a colostomy feels relaying this personal info over an intercom.

Maybe for the sake of fairness everyone should be scrutised to use every customer or public loo… Can you just imagine “Why do you need to use the loo madam” “Erm I really need a poo!!!!” See it just would not happen.

Owen is only 6 so at them moment he is in a ‘Snappi’ from Wheelchair services and I guess can be mistaken for a typical (large) buggy by some. Though his head support is a little bit of a give away.

On one of our days out there was a small peroid home to around my two younger girls wanted to go in, as did their Dad. We up to the door where two members of staff were dressed in period costume to greet everyone. My eldest and I wasn’t sure if we wanted to go in but I joined my Husband and walked up pushing Owen, My thoughts were to take a picture of the dressed up staff and the kids in front of the beautiful house. As we rolled up to the door, before we had chance to say hello we got told we was not allowed in with a buggy. I said it was a wheelchair not a buggy. The man insisted we could not come in due to the age of the House so buggies were not allowed in. I again told him it was a wheelchair and my son was disabled and therefore could not walk. The man and lady then told us in that case if O needed a wheelchair they had their own which we could use. but if we did need a wheelchair they had their own we can borrow. With Owen sitting comfortably in his own highly supported, especially adapted chair I started to get irritated. I started to explain that there own chair probably being a standard wheelchair would not be at all suitable for his needs. He would simply fall out. I could sense my girls wondering if again their mum was again going in ‘Warrior Mum Mode’ unfortunately they have witnessed this enough. After a few whispers they said if we could wait they would call their Manager. It was a hot day. I saw a nice shady garden next to the house, Owen would probably moan all the way round the house anyhow. So I suggested Alex went in with Lilly and Florence while me, Owen and Beth would look around the now even more appealing shady garden.

The garden was just as nice and pleasant as it seemed, we were again chilled.. That was until a lady started shouting at us. Not hearing what she was saying both mine and my eldest my first thought was maybe we was not allowed here.. or maybe not with a wheelchair… But she introduced as the manager and apologosed for the way her staff treated us, of course we were welcomed in the house they even had lifts we could use. She explained her staff had never seen “such a chair” pointed to it in such confusion like it was a spaceship. I thanked her but said as our family are probably half way round now we didn’t want to bother. I told her maybe her staff will learn from this and not to be so quick judge. I felt I had been accused that I was lying my son was in a wheelchair just so we didn’t have to get him out of a pushchair. In that moment it hurt.

As a family we do not want special treatment we just want fairness.

Maybe when my son is older, maybe his disabilities will be more obvious and less questions will be asked? OR maybe this is it, we will constantly have to prove worthy of assistance and accessibility. If that is the case than visable or non visable disability it does not matter the fight for true accessibility and full inclusion goes on and that fight really should be together.

I would love to hear your stories on the subject.

Young Carers And The Summer Holidays

https://www.actionforchildren.org.uk/news-and-blogs/press-releases/2018/august/three-quarters-of-young-carers-feel-lonely-during-summer-holidays/?utm_source=twitter&utm_medium=socialorganic&utm_campaign=&utm_content=july-youngcarers

I feel for my girls during the Summer Holidays, with their roles as Young Carers (something that I was not ready to accept they were till recently out of my own guilt. Admitting they were Young Carers meant I was some how failing them) they can not simply do they same activities as their friends, go the same places all the time and have the same selfish and carefree attitude that many kids their age have torwards the six weeks of ‘fun’.

I try not to burden them with Caring tasks, but they naturally help out. When Owen is upset they try and cheer him up, I ask them to keep an eye on him if I have to leave the room and to shout if his reflux hits again. They mainly have to sort themselves out between them if I am in the middle of something I can not pause.

But that is not what upsets me the most. It is more the fact of all the things they can’t do. Even a simple trip to the park can end in disaster if Owen is not in the right mood. I have tried to counter this. Owen seems to calm with his music on, so have been playing his playlist on my phone when out and about and it has been working. I Just brought Owen a little bluetooth speaker that can clip on to his Wheelchair we are yet to try it out.

Next week Alex is off work. We are not going on holiday this year so we wanted to plan lots of great days out. This was my task this morning. Yesterday I asked for beach ideas and many came up with some great ideas, some even had beach wheelchairs who many will know how much fun Owen had in these last year while in Cornwall.

This morning, as I am planning a day in London I was looking at train and Underground Stations with total no step access from entrance to train. The TFL Journey Planner said there was no such routes so I looked into each station, though I didn’t get much further than my home town. The lift a Watford Junction to the main platform to London is broken, on further investigation it seems that this needed lift has been broken for over a year. Instead of simply fixing the lift they now have a strange scheme of getting a taxi to pick you up from the front of the station drive around the back to the car park and getting you on the platform through a back way. This just seems wrong and stressful.

As I am only one pair of hands they have to step in and help with Owen and with each other. I have no other support on a day to day basis in the Summer Holidays. That is one of the reasons I am currently looking to employ a PA for Owen just a few hours a week just for that extra pair of hands. Yesterday the strain of lifting him and doing probably too many activities on the floor and up and down again took it’s tole on my knee ( Old injury from running in Feb) & I spent the evening miserable and in pain. It made me worry with a EVER increasingly growing boy.
*On another note we look like we are a tiny step closer to get Hoists fitted and the Bathroom extension done. As a visit was planned from a building company who will be completed the works along with a hoist company – though this was cancelled due to the boss being ill (one step forward to steps back)

I am really hoping that we can get to do some fab things on Alex’s week off and it all goes as smoothly as it can. I think we all deserve this at the very least. Especially my three amazing girls and my amazing boy.

*** Just to add before I go, I know I am guilty of posting lovely fun filled pictures on social media… but just make sure you know this is just a snap shot. The best photo of the day. A lot of hard work and planning has gone into being able to take such a photo and a little bit of luck. Please during the Summer Holidays do not feel pressure or guilt that your Summer Holiday pictures do not live up to those of others.

Remember….

Comparison is the theif of joy

Find the joy in your day no matter how un flashy it maybe.

End Of Year Reports

20180720_1521504682166889211062430.jpgSo that is it, another school year done and dusted. How can it be?

The end of the school year is rather emotional for many, their little ones moving up from reception to year one, key stage 1 to key stage 2 or that really scary transition from primary school to secondary school.  All I have had experience of, and having four kids with ages spread out from 5 to 15 many a milestone I have still to come again and again.

I still battle with this time of year and as a reminder of what I mean Facebook did that delightful thing of bringing up a past status from “On This Day”

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This was when I was 27 weeks pregnant with the twins. I had already been told I probably wouldn’t last my whole twin pregnancy and I would most likely deliver early at the end of September. In my mind this mean’t I had a whole 6 weeks to relax and spend some quality time with my two eldest daughters before the chaos of the twins arrived.  Little did I know this was not to be. The next week during a scan which we all as a family of four went to we found all was not well… I won’t go into it as I have written in depth about it before on here, (link at bottom if you want to read about it)  but it resulted in the Twins being born at 28 weeks.

Fast forward 6 years….

20180715_1541328730416143238659520.jpgOwen has left his beloved Rabbits Class and is moving into Ladybirds. This is his first move at school and although we are anticipating some slight teething problems at the start (Owen does not like change, new places and new faces) I am positive with his new-found confidence he will settle in fine. He has come on so well this year in so many areas, like I said his confidence has gone up and some sensory issues have lessened (although some new ones have appeared) He is communicating much more proactively be it by his facial expressions, vocalisation ( He can say the word “Hi” & “Hello”too) or by his communication switches, this is something we are going to work on over the summer holidays. He is bigger and stronger, His vision has improved (Something a horrid doctor said would not happen, but Owen has proved otherwise) we are excited to see where he takes us next.

20180622_1213227314081973764993179.jpgFlorence started the year worried about school, clinging to my arms at the door with teachers trying to convince her to go in. She started to realise she found things harder than most and this knocked her confidence a little. With support she has made progress and her confidence has gone up.  I now stand at the end of the path and she now skips in with a beaming smile on her face. Florence still has trouble with her communication and this is one of the things that really frustrates her. She will continue to receive support in all the areas she struggles with in year 2 and I hope with her determined nature she will continued to make great progress.

One thing that makes me sad is the emphasis on attendance. Obviously I agree that a childs attendence at school is important but reading on Florence’s report that her attendence has “room for improvement” is sad. As an ex prem she seems to have a lower immune system than that of her older sisters, probably also adding that due to the young age of the class that maybe basic hygiene is not up to scratch, she seems to just pick up any bugs going, most of the time this just manifests itself as a high temperature for 24 hours. Florence also has paediatric appointments to attend so this is something to take into account. Luckily Owens SEN school are far more understanding, I would hate to imagine Owen’s percentage. Unlike florence who when catches something has a high temperature for 24 hours, Owen takes on average up to two weeks to get better. Hence why I am really strict (and sometimes get cross) if someone is or has been ill coming into contact with Owen.

It is hard at times to see others celebrating grand achievements academically, not that I begrudge them doing so I do the same also, But when you know your children are going down a totally different path or maybe more of a bumpy path it does give you a slight pang of sadness I guess that things are not that easy for your child despite how much as a parent you try and help them. But as a proud parent you have to look for and give merits where they are due.

Born early at 28 weeks they had to learn themselves how to breathe, then how to feed “breathe suck swallow”. They are so strong, determined and fought so many battles that they have already achieved miracles and because of that fact no school report can match up to that.

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Posting of Old Blog Continued – The Doppler Scan that changed everything!!!

The Beginning

 

Superstar Sibling

A bit of a different post, this one is about Owen’s 2nd eldest sister Lilly.

Last Tuesday night Lilly took her Promise to become a full Girl Guide. She was so excited and very confident in doing so Lilly also had a glowing school report. Her school report stated she “Works hard & made good progress”

But what also shone out for me was the teachers report of her “Showing great kindness & care… in particular giving wonderful support to new member of class” Her new friend has cochclear implants and Lilly readily assists her friend without a second thought, just how it should be. She is always on hand to stand up and support all her friends.

I have a half written blog about teaching my children the importance of kindness (I promise I will try and finish it soon) but sometimes it is children who teach you these things and many an adult could learn alot from her.

Lilly is such a Sunny girl but with a FIERCE passion for doing the right thing. I glad her teacher noticed this.

Paper Memories

Having a clear out and came across a piece of old crumpled paper.

It was my list of names i had on me as I went to the hospital to be monitored for the last time at just 28weeks. As you can see the meanings behind the name is important to me. Also gives you a clue why my blog is called what it is.

Later that afternoon not long after having been told I was going to have to deliver (emerg c-section), I got that bit of paper out and alex and I with the two girls also sitting on the end of the hospital bed set to finalize their names.

I had just been told by the neonatal consultant they would be rushed straight to NICU. I felt so strongly that as I could not be at their immediate side I did not want to send them up to the unit alone and nameless.

So between the four of us, we decided on the twins names. I wrote it on a tiny scrap of paper and made Alex promise that he would make sure everyone in NICU knew their names.

My mum soon after came to take the girls and I was rushed upstairs.

So on 27th July 2012 as everyone else was settling down to watch the Opening Ceremony of the London Olympics.
Owen Harvey and Florence Ella were born.

The Cruel Twist In Our ASDA and Changing Places situation.

You have probably already seen my posts on both Facebook and Twitter regarding me feeling completely outraged and disappointed regarding the lack of Changing Places at my local ASDA Store Watford.

https://www.facebook.com/flourishingwarriors/?ref=br_rs&hc_ref=ARSuiVMZocD8qs0dNpvMr9kSsngreUZ7cLGWTB-I-0E5diSN0MEkXt9SlfkqProlkZA&fref=nf

https://l.facebook.com/l.php?u=https%3A%2F%2Ftwitter.com%2Fflo_warriors%2Fstatus%2F991351168092827649%3Fs%3D19&h=ATNbnyyv34vP7tV0freMx_YQ81PbMHvV1r2JPebYUo-o55UxlYOyLIuDdyKfGdB3CupuES6qDDAcFu8qieFcyHWI1yhYDGYwxI9fj9MQ56_mdPMnpQ

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To enable me to write my Formal Complaint I wrote down a timeline of events and correspondence, I thought it maybe of some interest to share just to outline how long I have been asking for Changing Places at my local ASDA store.

This is just a shortened down version of the main points and is not including all the auto responses, Twitter and Facebook posts;

*I first approached ASDA on 7th June 2016 outlining the need for Changing Places. As I didn’t get a suitable response I then again wrote to my local store and the C.E.O at the time Andy Clarke.

*On the 23/06/2016 the ASDA Service team responded on behalf Of Andy Clarke stating they were looking at installing Changing Places in ALL stores, but it was something they could not do over night. I was assured they would contact the planning team to try and speed things up regarding getting a Changing Places Toilet in my local Watford store.

*On the 22/09/2017 I noticed my Local ASDA was undergoing a major refurbishment. A perfect time to install a Changing Places facility that they said they would given the opportunity. I wrote again to my Local store and to Asda online making sure a Changing Place was in the plans.

*On the 26/09/2017 My local store got back to me confirming that as part of the major refurbishment the toilets were getting a revamp, BUT NO CHANGING PLACES were to be installed.

*On the 09/10/2017 I sent Sean Clarke the then C.E.O of ASDA a formal complaint regarding the lack of Changing Places in the refurbishment plans and therefore not making any reasonable adjustments.

*10/10/2017 ASDA Executive Relations responded and confirmed they would now be putting a Changing Place Facility in the Watford store as part of the refurbishment.

*11/10/2017 This was plainly confirmed in another email from Executive Relations.

*25/04/2018 a whole 6 months after confirming a Changing Places would be installed I asked both my local store and the ASDA Service Team where was the Changing Places?

*26/04/2018 ASDA Service Team email me back to confirm they have spoken to the Store and said they were told the refurbishment of the toilets and Changing Rooms have all taken place and all is now open.

*26/04/2018 I ask again whether they truly mean a Changing Places with Bench and Hoist facilities.

*27/04/2018 ASDA Service Team confirm work has all stopped at the Watford Store and the Changing Places is there.

*27/04/2018 I call Customer services in store myself, speak to a lady who has been liaising with the ASDA Service team and she confirms a Changing Place is there. I ask her has she seen if a Bench and Hoist are in the room. She admits she has not looked in. I ask her to go and have a look behind the door and call me back as I do not want to take my son to an ASDA store thinking there is a Changing Place only to be found there is not. She hangs up but fails to call me back.

*30/04/2018 I go to the Watford ASDA store myself armed with my son’s radar key and open the door to find NO CHANGING PLACES.

*03/05/2018 A second Formal Complaint is sent.

 

 

screenshot_20171012-1403311226401997.jpgThe fact that ASDA has been aware of the Changing Places campaign and has indeed installed in a few other stores shows that they have anticipated the need for such equipment and facilities and have failed to make adjustments in anticipation of a disabled customers need within their service and within my local store. This is particularly true as they have just undergone a major refurbishment where the Toilets were revamped.  This would have been the ultimate time to installed a much-needed Changing Place toilet.

 

20180501_092352200575943.jpgWith sharing on social media I have had so much support so thank you. I have had qutie a few comments regarding the pictue I took of the Standard Accessible Toilet which is there and how ASDA Doesn’t even seem to get that right. Comments like It is too small for their Power Wheelchair, The Flush is way too high and most distressing is that the Red Emergency Cord does not reach the floor. If ASDA can not get the basics right no wonder they are struggling to get their head around how Changing Places.

Some of you my recall a previous Blog Post in which I praised ASDA for “Doing The Right Thing”

Why ASDA Know That Mum’s Are Always Right

Not only do I feel outraged and dissapointed for my family, I feel disappointed for all the local people who were so thankful that a Changing Places was coming to their local Supermarket. I am left feeling embarrassed and deeply sadden that what I said was happening, a sure thing,  may not be happening at all.

Lesson learnt – “Do not believe what you are told unless you yourself physically see it.”