Tuesday, 20 October 2015

Fundraising for a Quality of Life!

It's been a while since I have written a blog post but as many of you know I have not been doing nothing.  Behind the scenes, and through Facebook, Denise and I have been working our socks off trying to get our fundraising for Rowan off the ground.  It's been a rocky process, and I really didn't think it would be this difficult, but it is what it is, and I will not give up or be beaten!

So, a question I am often asked is 'what are you fundraising for?'.  Now if you'd been with us at the beginning of the journey you would know that we were fundraising for the down payment for a Wheelchair Adapted Vehicle.  Rowan was meant to be getting a power chair, and therefore we needed an adapted car to transport the power chair.  More recently however, there was some difference of opinion amongst professionals and therefore, as it stands at the moment, Rowan will not be getting a power chair.

I was really hurt and upset at the time, and I had to take a time out.  It took a few days, maybe more for me to get my head straight. I was worried that I had misled everyone who had already donated, that I had let everyone down.  I was ready to give up fundraising and hand back all the prizes we had had donated.  Give everyone back their money for tickets to the disco we had arranged, and call it quits.  If i had done that though, it would also have meant the money we had in our just giving account (nearly £300 at the time) would have gone elsewhere, and I didn't want that to happen either.
The fact still remained however, that Rowan was in pain every single day.  The fact still remained that as his Mum all I ever want to do is take that pain away, and I can't.  A significant part of my day is spent distracting, soothing, making hot water bottles, rubbing, massaging, stretching muscles, strengthening muscles, encouraging pacing, running warm water over various body parts, and crying inside.  It's horrible having a child who is in pain, and knowing there isn't much you can do about it, but you try anyway, just in case THIS time it makes it go away, maybe it's the 876th time you rub his back that's the charm.  Some days are better than others, some days are a lot better than others, but whether it's a good day, or a shockingly awful day, the one thing we, as a family (and Denise), are determined to do, is give Rowan and his siblings the best quality of life we possibly can.   His pain will not rule our lives, and it will not limit his life experiences, nor his quality of life as long as I breathing.

This determination not to be beaten was, ultimately, the thing that made me dry my tears, put my big girl pants back on, and work out what the next steps were (with lots of help from Denise).  So, the underlying purpose of fundraising was to make sure Rowan had the quality of life he deserves, the quality of life he fights every day for.  That has not changed, and will not change.  What has changed however is the aim of fundraising.  We have 2 immediate targets, that will enhance Rowan's quality of life, and a longer goal as well.

The first is to purchase a Nutribullet pro 900.  Some people may know what that is, and some may not.  In Rowan's words it is a 'fancy schmancy whizzer'.  Rowan currently can't eat very much, both in variety and in quantity.  In order for him to taste things it has to be a smooth consistency which will drain out of his gastrostomy (the tube in his tummy) into a drainage bag (I know it doesn't sound pleasant, but it's a part of our lives).  This does cause him some pain, but he says it's pain he can manage and it's worth it. There becomes a point (after 2 years) that you just get bored with the same jelly, yoghurts, custard, ice lollies and soup.  I had a hand blender, but it was inconsistent, and unreliable and basically has now given up (I used it to puree food for Katrina as a baby 12 years ago, so it did it's job!).  The last few times we have visited the hospice, one of the things Rowan has looked forward to is mealtimes, they have one of these fancy schmancy whizzers and it means he can eat ANYTHING after it's been in the Nutribullet, because it's more powerful than other products of a similar nature, it's a fantastic piece of kit!  Rowan is extremely excited about the prospect of eating things he has missed out on, flavours he has missed, curries, cheesy veg, spag bol, lasagne, all those things I cook everyday that smell so yummy.  I have even said I will whizz a McDs burger and see what happens, we can experiment!  These currently cost approximately £130, but will make such a huge difference to Rowan!

Rowan much prefers it in blue though!
The second item is a bit more boring.  As many people who read my blog and have liked Rowan's facebook page will have seen, we like to take every opportunity and run with it, wherever it may take us.  We travel all over!  From Nanny and Grandad's in Sussex, to various hospitals, up to Louise in Tamworth for yummy cakes, to the Natural History Museum, West Midland's Safari Park, Paulton's Park, all over!  And we have many, many more destinations to visit on our list!  Obviously this means lots of travelling time in the car, and up until the last 9 months or so we have been just fine, however, more recently Rowan is experiencing more and more pain in his car seat.  His back hurts, his legs hurt, and he gets pins and needles in his feet.  He can't be in his car seat for more than about 45 minutes before the pain sets in, and even after we have stopped and got him out the car, stretched and done anything we can think of to make him more comfortable, after another 20 minutes he is back to being in pain, crying, complaining, screaming.  We have tried everything from rear facing, to forward facing, crossing his legs, leaning them on the seat in front, a tens machine, nothing really works that well.  Just to get to Great Ormond Street is about a 2 hour drive (on a good day) that's 2 stops each way, and lots of tears (Not just from Rowan usually!)  If we are travelling 'to' a destination, it means before we even get there he is in pain, and sometimes that does impact on the experience although we try hard not to let it, although the journey home is often.....challenging.  I have researched, a lot, and asked a lot of questions, and it would seem the way forwards is a new car seat.

Only, as soon as you add the infamous title of 'special needs' it automatically gives the right to suddenly multiply the price by 10!  Rowan needs a car seat that will support his back, keep him sitting in the best position, prevent him from slipping down and sitting on the bottom of his back, support his feet, and just make sure everything is lined up exactly how it's meant to be.  This then, should mean that his pain is reduced, and he can rest properly in the car, and be comfortable while every part of him that needs supporting is supported in the right way.  There are 2 car seats that I have come across that will give him what he needs, both, I have been told are approximately £2,500+  Is it worth it?  Absolutely.  You just can't put a price on things like this!

You may see Rowan walking around and can't work out why he needs these things, because he 'looks' just fine, but looks can be very deceiving.  Rowan's muscles just aren't as strong as they should be, he has to do exercises every single day, and despite these he still gets completely and utterly exhausted, to the point where he physically can't walk up the stairs and his legs give out from beneath him, he gets pain from doing the simplest of things, that we all take for granted.  Unfortunately Rowan's body just doesn't do what he needs it to do, no matter how much he wants it to, or how hard he works for it.

In order for Rowan to live the life he deserves, the life he fights so hard for, he needs a bit of an extra helping hand.  I would love to be able to afford these things on my own, and not have to ask for help, but it just isn't going to happen.  I know in the current climate everyone is strapped for cash, it's not easy for any of us, but every penny (or cent, or euro etc) gets us that little bit closer to our target.  Every penny someone donates, is making a positive impact on Rowan's quality of life.

Rowan has his own just giving page if anyone would like to make a donation, I just want to point out as there has been some confusion, the money you donate does go directly to Rowan.  Tree of Hope are a charity that helps families like ours to raise money, they hold the money for us, and we apply to them to release the funds, it gives those who donate a reassurance that their donation is going on what we say it is, it also gives us the advantage of a text to donate number, and a charity number as well, but it does go into a fund specifically for Rowan.  Here is the link Rowan's Reality

However, if, like many people you want to get fully involved in the process, Denise and I have worked our socks off organising a Halloween Disco this Sunday (25th October) in Kingsthorpe, Northampton.  There are about 20 tickets left, and the information is below, if you'd like to come, let us know! There is a mobile number, and an email address below, or message us through Rowan's facebook page and we will get you sorted out.  Denise and I have a couple more ideas for fundraising events once we have gotten over this one (and some time to recover) and we are grateful for every single one of you who are behind Rowan, and believe in him like I do, even if you can't donate, even if you can't come to our events, please share his fundraising page, like his facebook page (Rowan's Facebook Page), and see for yourselves the difference you are making.

Wednesday, 15 July 2015

Single Parenting and Hospital Admissions.

I realised a few days ago, that no one really understands the logistics of what happens with Katrina, Cameron and Ayden when Rowan needs to go to hospital, whether that's the local hospital, or GOSH. You would assume they'd go to family or friends, I mean that's what happens with most siblings isn't it? My situation is a little different however.

Due to circumstances I don't have family who are able to help out, either through work commitments or logistics, and actually the vast majority of family would not offer anyway, due to them just not being part of our lives. The 'other' side of the children's family either don't know my children, have never met them, or are not allowed contact with them, which has been decided by a court. This only leaves friends. I don't have many friends, in fact, when it comes to needing someone to help out with the kids the list is pretty much non existent.

So what happens with the kids? Depending on which hospital Rowan happens to be in, and what days of the week it is. If it's certain days of the week, I have one friend who helps out, whether it's sitting with Rowan, or looking after the other kids, or running to the shops, or whatever will be helpful. If it's the other days of the week, I am alone. It's hard. Very hard. 

If he is in the local hospital, my routine looks a little bit like this:

6am Get up get the kids ready for school, including putting dinner in the slow cooker, hoovering, dealing with the dogs, tidying up, putting a load of washing on, putting the dishwasher on.
815am Take the kids to school
830am Go to visit Rowan, trying to get there for 9am and wait for ward round
9am-3pm deal with doctors/nurses/Rowan, getting him up and dressed and washed, and fed, and entertained, medicines done, out for ward leave, IV to do, checking his temperature, cuddling him, comforting him, popping to the shop to top up supplies, dealing with blood tests and other tests, as well as a constant influx of calls, texts, and emails about everything, and yet nothing all at the same time!
3pm leave the hospital to go pick the kids up from school
430pm arrive back at the hospital after picking all the children up, nipping home to collect ipods/tablets/toys/dvds and anything else Rowan has requested.
430pm-6pm entertaining all the kids in a very small space, getting homework done with them, and reading, games, watching TV, more meds, more doctors and nurses to deal with, emptying drainage bags, getting Rowan's Pjs on, teeth brushed, sorting out what needs to go home, and what needs to stay, tidying up his cubicle.
6pm-730pm I.V.s and TPN connection to happen, getting Rowan into bed, and settled for the night, leave him crying because he wants to come home.
730pm head home with the older 3 kids, now grumpy and tired!!
8pm- Arrive home dish up dinner, to find I forgot to buy potatoes/chips/rice/cheese etc. Hunt in the cupboard to find something to substitute! While getting the kids to feed the dogs, tidy their rooms up, find their stuff for tomorrow.
830pm Kids eat dinner, put their Pjs on, and go to bed, then I eat (or not, which is more likely).
9pm Spend time playing with the dogs, topping up their water bowls, fold the washing out the tumble dryer, put the wet washing in the dryer, put dirty washing in the washing machine. Unload and then reload the dishwasher, clear up after dinner, sort out whatever Rowan sent home or requested for the next day. Catch up on emails and messages on the answerphone, write a few emails, open the post.
1030pm Call the hospital to see how Rowan is.
11pm Go to bed, but now I can't sleep.
12am, the hospital rings, Rowan's TPN pump won't stop beeping and I have to talk them through step by step how to shut it up and get it running again after they have done his I.V.s
1230am, try and sleep.

It's absolute chaos as you can see, trying to run a house and feed the kids, and keep them all at the things they need to be at. This is a normal day, on a Wednesday or a Thursday, it's even more complicated as it's Guides/Beavers/Cubs. But it needs to be done. The dogs don't get walked, I don't get to go for a run, I don't get to clean the bathroom/toilet/mop/dust, I don't get to go food shopping. It's lonely, and isolating, stressful and exhausting! The few times I have asked people to help me out, I have either been told no, or people are busy, that they find it hard to see Rowan poorly, or something else. I understand people have lives to lead, and sometimes I get really upset that no one will give me a hand. I may appear that I have it under control, but I am often falling apart. I often go all day without having eaten anything, because I just can't get away. When Rowan is really poorly I don't even get to the parents room to make a coffee as he just wants to be with me all the time. Sometimes I physically can't eat, the emotional drain of it all, and the worry of him being poorly, he never has to stay for something 'simple' as I can do so much of his care myself, so when he is in hospital, it's serious, and having to leave my 6 year old in hospital all on his own every single night, hurts in ways I can't explain. Would you leave your 6 year old alone in hospital overnight, I mean it's not like a sleepover is it? He's there because he is very poorly, and the time your child needs you is when they are poorly and I just can't be there with him, because of the circumstances. How would that make you feel? What would you do?

If Rowan is in GOSH the whole thing is completely different. Due to having no one around to help out, after several years of constant fighting and arguing and failed placements and complete nightmares, and me having to sort childcare out mid admission because whoever has the kids can't/won't have them any more, the social worker at GOSH said enough was enough and she intervened after I literally had a breakdown mid-admission with the stress of it all. My older children now go into foster care while I am at GOSH. I usually have to fight for it for each admission, and it has to go to panel, and there is a whole process to go through and usually requires a lot of input from other professionals to justify the hospital admission. I didn't want this for them, but I have no choice. Usually they get to meet the foster carers before they go into care, see where they will be staying, get to see who else lives in the house, any pets, choose their bed (for the boys), ask any questions they have, I can talk to the carers about the best way to manage the kids, and feed them etc. Then when they are in foster care they can ring/call/facetime (the brilliance of apple products and wifi!) me as much or as little as they want. The placement is stable, it's not going to fall through, and while it's usually a little more complicated than that, arranging time to see them, and spend time with them during the placement etc. I'm not going to find myself with nowhere for the children to sleep or stay. So for this particular admission we had weekend leave, so I picked all my kids up from school on Friday, Saturday we nipped to the shop, and did a bbq and did marshmallows and smores, and ice creams, the kids had a water fight, and watched a film (or went to bed early in Rowan's case) and had them until Sunday evening, when I returned them to their foster carers and return to GOSH ready for the second week.

When I say my kids are going into foster care, it's always assumed it's a bad thing, or a negative thing, or that something has happened, or that I have done something wrong. It's not like that, and I wish they would call it something else rather than foster care, respite care, or something. It's pretty rare to be in the situation I am in, and therefore lots of the protocols we have to go through are exactly the same as when they remove children from parents and that's hard to stomach sometimes. Then it's a case of making sure the forms are filled out in a way that reflects the situation, as they just don't work otherwise. For example, I usually I get letters a few weeks after I have got home again with dates and times for medicals, which is standard practice when a child is put into care, and I have to ring up and cancel them, because my kids are back at home, and they don't need medicals anyway. There needs to be more awareness and different processes to go through in this situation, however unusual or rare it is, it still happens!! It's hard enough having to leave your children with strangers, even though you know they have been through rigorous processes, without leaving them with a big 'LOOKED AFTER CHILDREN' form, that makes you feel inadequate as a parent.

So as I type, Katrina is with one foster carer, and the boys are with another, and I am at GOSH with Rowan. It works, in as much as the kids all get a break from each other, and they are in a stable environment continuing with their routine and going to school etc. It's hard for them emotionally to be split up, and not at home, and not with the dogs, nor in their own beds. I would love to say it gets easier each time, but it doesn't. This is one of those things that happens when there is a practically non-existent support network. We get through it, but it's not one of my favourite things that's for sure, and it usually ends up with me making myself ill! That and the kids are all over the place emotionally, one has meltdowns, one cries all the time, and the other gets super hyperactive!

I guess the point of this post was to give you all a little insight into how absolutely chaotic life can be with a child who needs frequent medical attention and hospital stays. Especially as a single parent. Especially with a minimal support network. My advice to you would be, if you know someone in a similar situation, don't assume they have it under control. Just because it happens regularly, does not mean it's easy, or organised. Offer to help, whether it's school runs, bringing dinner, bit of childcare, visiting the hospital, bringing lunch, magazines or coffee, offering to walk the dog, or have the kids for a sleepover. I can tell you now, someone in the situation I am in, would be more grateful than you can ever imagine. That person would also often be the first one to offer you help if you were in need of it. Friendship is a two way street, sometimes it's hard for people to ask for help, and there are only so many times they are willing to ask and be told no before they start believing no one cares. Don't just say you care, when there is a crisis and help is needed, show that you care.

Friday, 3 July 2015

The Plan is......No Plan

So as you all know the clinical error occurred (check out Clinical Error).  Since then we have really been trying to adjust, dealing with a few line infections, and waiting for more tests so we could move forwards.

In January we went into GOSH for 3 weeks for various testing.  Some were routine, and some were meant to be diagnostic.  I won't go into the tests themselves, but the main one was a nuclear transit study, he was only the 3rd to have that one,  It was pretty traumatic, he ended up on ketamine for pain relief, but we got the test done.  This test involved a number of scans, every day for 5 days, watching a very special dye go through the system (it's not the same as other dye type tests although I don't know why).  After a couple of days the dye wasn't moving, I didn't think anything of it to be honest, and carried on, by day 4 it still hadn't moved, so I asked the guy doing the scan, and he said it did seem to be stuck.  Uh oh.  We were meant to be going home for the weekend on the Friday, after the scan, however the scan revealed all the radioactive dye was still inside him.  Stuck.  We had to have a weekend of laxatives to get all the dye out, thankfully it worked (there was a little bit left but they let go) and we moved on to the next tests.  I was really hopeful this would lead us to a diagnosis and a plan, it was an abnormality, something we probably would have seen in manometries if they had been successful!
Just a picture of Rowan,
because he's worth it!

I had a few chats with a few doctors before we came home, and it seemed like an ileostomy was going to be the way forwards.  (an ileostomy is a stoma, that brings his ileum to the skin, and then a bag is attached on the outside, and basically his 'waste' goes into the bag, rather than him doing a number 2 on the toilet) I spoke with his consultants, I tried to get my head around it, I googled, I asked friends who had ileostomies, I spoke to nurses.  I complied a list of questions, I asked about the process, the positives, the plan afterwards.  It looked as though once the ileostomy was in and healed, we would go back to gosh to try feeding him again, and then increase the feeds and reduce the TPN and we could go back to pre-clinical error state.  For the first time in a really long time, something inside me had hope.  Hope that he would be able to go swimming, be off TPN during the day, be able to eat whatever he wants, whenever he wants, gain weight be strong again.  I could see a little bit of the future, and if you'd asked me 3 years ago, if I was happy with the way things were with Rowan, I would have said no, but now, I would do anything to go back to that.

So, at the end of April, I drove down to GOSH for a meeting with the motility team and his usual TPN team.  The purpose was to discuss the plan (aka ileostomy).  I phoned the CNS the day before and clarified that's what we were there to talk about and she said yes, and that the problem they found in January, no one had said would 'fix itself' and therefore everyone was on the understanding this was the way forwards.  I know it sounds silly, to phone the day before and ask about the content of the appointment, as surely that's what the appointment is for, but I don't manage things very well when unexpected things happen, no one does really, but I really really don't manage it well.  So I drove down to GOSH, finding that part of me that I needed to be Rowan's advocate and ask questions, and have the confidence to air my opinions if they differed.

First off, the first thing we do is height and weight.  He had lost weight, quite a lot of weight in fact.  Bugger.  So the appointment started off with his usual team, tweaking his calories, adjusting the rates and volumes, adding in more of the things his bloods said were lacking, had a look at his medications, nothing remarkable, just a typical nutritional appointment for us.  Then it was time for the motility consultant to talk.  He started explaining to me what they found in January, that the left side of his colon doesn't seem to work.  (I already knew that).  That's why we have so many issues with constipation (I knew this too).  So then his usual consultant said 'so the plan will be an ileostomy' to which the motility consultant said 'no'.

No.  No?  No.  No?  No.  Huh?  The room was silent, the atmosphere could be cut with a knife.  Blindsided, shit.  His consultant turned to the motility consultant and just said 'why?'  I could tell she was as shocked as I was, if not more so!  He explained that the finding, while significant, was insignificant.  While it's an issue, and previously would explain some of his issues (pre clinical error) it's currently not causing an issue as such.  I think I must have had that 'what the heck' face on, and I just couldn't talk.  So he tried explaining it to me 'if we get Rowan feeding, IF, then this will become a problem and he may then need an ileostomy, however, if we put an ileostomy in now, it won't make any difference to his current feeding situation, therefore it's unethical to put him through surgery, when there is no benefit'.  I understood.  But I was still confused.  So basically, we needed to get him to feed.  Why can't he feed?  Why can't he eat?  Why can't he have milk feeds into his jejunum (small bowel)?  Why?

'The clinical error probably did something, to something, we just don't know what either of those somethings are'.  Oh.  Shock again.  Ok so more tests right?  More tests that we run to find out what those somethings are? No.  They had a bit of a conversation amongst themselves, trying to work out the plan, if there had been any tests that they could do that we haven't already done, that weren't potentially too risky considering the clinical error, and the answer was no.  Everything they have done shows the problems we have when he feeds (along with videos I have sent them), however they just don't know why, what, or how.  Completely undiagnosed once again, a complete mystery.

The plan was NO PLAN.  The plan was 'go home and have fun'.  Accept that Rowan is on TPN long term, that at the moment we can't feed him, this is it for us for the foreseeable.

I kind of went into shock for a couple of days, literally.  I couldn't talk about it, couldn't process, and certainly couldn't accept it.  TPN was meant to be short term, temporary, we were nearly off of it, now we're 100% reliant on it.  This was not what was supposed to happen!  I went through a whole grieving process I think over the next few weeks.  I had to accept a lot of things, that I hadn't been willing to accept before.  Adjust to this being our life, and not just a phase.  Then I had to start telling the professionals.  This no longer had an 'end date' that I needed to get to, before everything would be 'normal' again, and they needed to be aware of that, and look at long term, rather than 'in the interim period'.  This then meant a lot more meetings, a previous consideration of reducing Rowan's respite hours was thrown out the window (sharpishly) and he was re-awarded the same as he already had (phew).  School plans have been considered, and we're trying to get him on a different timetable to access more of the curriculum, as he isn't coping for more than a couple of hours.  Physio and OT and I had discussions around ways to help him be independent, while being dependent.  My life was once again turned upside down.

But it's worth it, it may not be the life I wanted, it may not be the life he deserves, it may not be the life he would have had, or should have had, but it is his life.  And no matter which cards he has been dealt, he will end up with a royal flush, and a big confident smile.  His cards will mean he is a winner every time.  I will make sure of it!

Thursday, 23 April 2015

How do we feel about being Undiagnosed?

Friday 24th April 2015 is Undiagnosed Children's Day.  A day where we (those of us with children without a diagnosis) try to spread as much cheer awareness as possible.  By celebrating our amazing children, writing blog posts around it, composing exposés about how life really is for us, the battles we truly face, the let downs from services, and revealing our feelings about how we live life with a catalogue of unknowns, all down to the fact we can not fill in the 'diagnosis' box, or tick a pre-assigned box on a form.

I could do the same, but I won't.  I have more than my fair share of negative stories to tell, the number of let downs, the number of battles and arguments with services to fight for what Rowan deserves.  The number of days I have spent terrified for his health, the amount of hospital visits and tests we have done, the number of inpatient stays, and blood tests.  The things Rowan regularly goes through are well documented.  I could write a thousands posts on just these, and some of the stories may shock you, and leave you horrified.  They may even upset you.

Instead, this post will be about the other side of life without a diagnosis.  Some of you may not understand what 'other' side I am talking about, so read on, after a cute picture of what my 'without a diagnosis' child looks like.

                                                                A recent hospital stay, doing music
                                                             therapy with Thomas's fund as distraction.
So, this 'other side' of having a child without a diagnosis, from my perspective.  I don't know what the future holds for Rowan, and I can't speculate, no one can.  The doctors have no new ideas, and while we occasionally get a little bit of information that tells us something new, it doesn't explain the whole picture or lead us any closer to that elusive label.  Having spent a number of years looking for that label, over and over, desperate to grasp hold of something, to explain it, to negate my assumptions I did something wrong, I failed, I could have done something different, I missed the whole point of becoming a Mummy.

When Rowan was 18 months old, he was admitted to Great Ormond Street for his long stay.  I could tell you exactly what his weight had been for the last 12 weeks, and on which dates, I could tell you blood test results, I could tell you exact dates he had met certain milestones, and I could recite every single medical person's phone number, email address, postal address, and full name and job title, the last time I had seen them, how long the visit lasted, and exactly what was discussed.  I thought that that was my job.  The doctors looked to me for those answers, those details, I had to have them.  If I didn't have them, I wasn't doing my job properly.  I soon discovered I was very, very wrong.

Someone, not long after we had been admitted, asked me what Rowan liked to play with.  He was a very poorly little boy, and it suddenly dawned on me, that I had absolutely no idea who this little person in front of me really was.  Don't get me wrong, I loved him with everything I had, I just had no idea what he liked to play with, what his favourite colour was, what he liked to watch on TV, what kind of music he liked, he was 18 months old, the age they really, really start to build into a little person, and I'd been missing it.  My little boy could be gone, and I never would have gotten to know him.  That day, my life, our lives, and mine, Rowan's, and all the other children's relationships changed, for the better I believe.

I stopped asking what blood results were, I stopped examining, weighing and measuring bodily fluids, and getting worked up about his weight, or lack of.  We were in a hospital, the nurses and doctors were there to deal with all that.  I took this opportunity to become his Mummy, and his friend, finally.  I went into the hospital toy room, and had absolutely no idea what to choose for him to play with, he had hundreds of toys at home, which ones did he actually play with?  I didn't know.  It took me a few days, but I worked it out, he likes the little tykes car, anything that played music and flashed, the noisier the better, he hated messy play, or getting dirty, I was started to learn who he was, and he was a cheeky monkey!! We started to learn makaton together, and we were finally communicating, together.  

I came home from that hospital stay with a whole lot of medical care to do, high risk medical care, that is extremely time consuming.  But, all I wanted to do was go home, and repaint Rowan's room, mickey mouse, because that was his favourite.  Red was his favourite colour, and he had an eclectic taste in music.  I wanted to get him home and introduce him properly to his siblings, and let him be himself.  That hospital stay was the most enlightening stay for me, it changed everything.  It changed my perspective of everything.  
This has been my second chance and this time I am doing it differently.  It's not easy for doctors to hear a parent tell them no when they want to run a particular test, and mean it, especially when they are so used to you always agreeing with them.  I made choices for Rowan, not just for the reason of finding a diagnosis.  I made balanced decisions, if a test was not going to change the treatment plan we were already actioning, whatever the outcome, I would now say no. It made me a better parent, a better advocate, a more confident person.

So this other side of not having a diagnosis, has taught me the value of the other things in life.  It's taught me the only thing that matters in life, is the quality of it, not the quantity.  I don't know what's around that corner, with, or without a diagnosis, no one knows, but without a diagnosis you really have to learn quickly to appreciate the fragility of life.  I tell people we can't tick a box, that means that we're filling the rest of the page, and we're really going to fill it.  Quality of life decisions can be hard to make, but I take one day at a time, one step at a time.  Rowan has a life, and he's going to live it.  He is going to experience as much as physically, humanly possible, whether he likes it or not.  And that's what we do.

So, recently Rowan has started horse riding, started, and become invested in Beavers.  He's had music therapy, we've been camping, we've been to a theme park, we've been to a festival, we've been to the beach, we've walked countless country parks, gone on easter egg hunts, been to the cinema, chalked on the patio, had a bbq, made cakes and biscuits, been to meet Paul Hollywood and Mary Berry, we've been geocaching, we've been to a farm, and a safari park, we've been swimming......and this list is still growing.

I just have to double check with myself sometimes, that I haven't spent so long fight battles, that eventually I often win, but not always, that I have sacrificed Rowan's quality of life in the meantime. It's a real juggling and balancing act, it really is like a circus in my house. There is a very fine line, and everyone's line is in a different place, but the medical side of Rowan, is not Rowan.  It's just a small part of him.  And even if we got a diagnosis tomorrow, it would not change who he is, who he has become, and who he will be.  He is the same, very very nearly 6 year old, with, or without a diagnosis.

Being undiagnosed can be isolating, terrifying, lonely and leave you feeling helpless and hopeless.  You're expected to fight battles that you just don't have the time and energy for.  You have to fight for absolutely everything your child deserves, equipment, respite, schooling, care, therapies, appointments, medications, you name it, without a box to tick, you have to fight for it even harder.

 We now have a place to go to vent all these issues, get support, and see how other people have done things.  Yes, every now and again there is a disagreement, but that's bound to happen when there are over 900 people in the group, but it often gets sorted out in the end!  But we also share the celebrations, we share how we accomplish things, we share how we adapt activities to make them inclusive.  This place is SWAN UK.  It's our little exclusive, yet inclusive club, no diagnosis allowed (unless you are a graduate Swan).  It's our little sanctuary, where we share things we wouldn't share with other people, from silly stories about the most embarrassing thing that's ever happened to you, to heart wrenching emotions when things don't go so well, sharing pregnancies (not mine), to sharing losses.  But we all have one two things in common.

  1. We have a child without a diagnosis
  2. We want our children to have the best quality of life they can

For us, as a family of 5, the focus is on experiences, living life to it's full potential, disability or no disability.  I know most of Rowan's medical stuff, it just sticks now, naturally, but I'm not afraid to tell the doctor I don't know when he first smiled anymore, and make them look it up.  I don't care when he first smiled, my only concern right now, is that he keeps on smiling.  Unless he is in time out!

So, the other side of having no diagnosis, learning to appreciate the little things, and life live one day at a time, and experience everything you can, no matter how big, or small.  Battles will always be there to fight, pick them wisely, and don't miss out on finding out exactly who it is you're fighting for.  I have maintained my promise to myself, Rowan's favourite colour is red, his favourite programme on TV is Jamie Oliver's 15 minute meals, he likes watching stampybloodylongnose on youtube, he still isn't a great fan of messy play, but does love to bake (and eat) brownies.  He absolutely loves minions, but his favourite film to watch over and over at the moment is Rio/Rio 2, that's until Annie is out on DVD!  He loves Imagine Dragons, as well as Taylor Swift, however his favourite song is Red Balloon by Charlie XCX.  When he grows up, he wants to be an ice cream man, with Ayden driving the van, and when it's not hot anymore, he wants to be a taxi driver.  I know who Rowan is, I know who all my kids are (apart from the preteen, she morphs every minute into someone new!) and we're going to fully live our lives, together.

We're off to get sorted for our next new experience, a certain someone's minion birthday party.  Please click the links below to read other blog posts to support Undiagnosed Children's Day

Saturday, 21 March 2015

What do you see?

When you look at this picture of Rowan, what do you see?

A little boy with ice skates on, a smile on his face, with a penguin called Rob?  That's what I see too.  In this quick photo that took less than a second to take, this what you see. You see what I want you to see.  You see the good part of this particular experience.  Would anyone really want to see the reality of the before and after of this situation?  Before this he was quiet, unsure, a little scared, it took quite a lot of convincing to get him out of the wheelchair and onto the ice.  He was only out of the wheelchair for about 5 minutes.  But it was the best 5 minutes of the entire experience.  He kept saying 'I'm doing it Mummy, I'm really doing it'.  He shocked himself!  He really didn't think he could do it.  He was proud of himself and so he should be!  This is what taking the photo is about, remembering the good part.  When I got Rowan and his siblings home from ice skating, the 'aftermath' kicked in.  The pain kicked in, his back, his legs, his tummy, everything hurt, he was exhausted, there was lots of screaming, lots of crying, followed by lots of leg rubbing, back rubbing, a warm bath, loud music, everything we try first, ending up with Tramadol, so he could relax enough to sleep, and once he woke up, he was in a better position to function throughout the day.

When you look at this picture of Rowan, what do you see?

A little boy, making his Beaver promise, proud of himself once again.  Smile on his face, happy.  He is now officially a Beaver!  (The youngest section of scouts if you have no idea what this is).  Maybe you see the TPN in his backpack, maybe you see the drainage bag dangling by his feet.  Maybe this disgusts you, maybe it makes you curious, maybe you don't even see them?  Maybe you see the cuffs rolled up of his jumper that's just that little too big for him.  This is a milestone in Rowan's life.  A huge one.  It's also something that he does with other boys (girls can attend too, but there are no girls in their group at the moment, just to clarify), boys his own age (actually technically he's the youngest right now, but not for long), interacting with them, a little bit of normalcy.  He is finally beginning to feel comfortable within that group.  You don't necessarily see his needs.  You can't see the TENS machine on his back because it's been playing up all week, and this takes the edge off a little bit.  You don't see the risks, you don't see the fact he has to have a specially trained adult with him at all times, you don't see the 2.5 hour nap he had before this, just so that he wasn't too exhausted to attend.  You certainly can't see the aftermath.  Within 10 minutes of being home from this fantastic milestone, Rowan transformed.  He was angry, very angry, screaming, shouting, I believe there was some swearing, there was certainly some kicking and punching (sorry Denise!), he was inconsolable, and irrational.  He didn't know what he wanted, nothing was good enough, he wanted everything but nothing.  As a parent, or any adult around him to be honest, it's hard to know what to do.  He is in pain, a LOT of pain.  Does that make it acceptable for him to behave like that?  Do you let him get away with it as 'he's in a lot of pain'?  Or do you discipline him, as it's unacceptable behaviour?  Sometimes all you can do is walk away.  Eventually I managed to calm him down (and apologise to Denise).  We talked (well he sobbed), put his pyjamas on, turned up his TENS machine, got him a hot water bottle, a drink, and Denise read him a few stories to calm him down.  It took 2 adults to get him into bed, and calm enough to rest.  This was the aftermath of going to Beavers for an hour.  Many people ask if it's worth it.  Is the pain worth it?  Is that hour of Beavers really worth the aftermath?  Absolutely.  If I asked Rowan if he still wanted to go to Beavers, even after that, he says yes.  In Rowan's life, I have to make decisions that don't always make sense.  Beavers offers Rowan something that he can't get anywhere else.  I have to balance Rowan's needs, his educational needs, his emotional needs, his social needs, as well as his physical needs.  His physical needs are just a part of him.

How about this picture, what do you see?
Rowan, and Jock.

Rowan riding a pony.  The last couple of weeks Rowan has started riding with the RDA (Riding for the Disabled Association fantastic organisation).  Anyway, he's on a pony, he looks so tiny!  Smile on his face, yet again.  Maybe you see the backpack.  This for Rowan, is physio, it's 30 minutes of riding a pony, up and down, playing little games, collecting toys to throw in a bucket, or flowers to give to Mummy (who's eyes are bloodshot and puffy, and leaking, struggling to breathe, Mummy is very allergic to horses!!).  Riding builds Rowan's core strength, he is really weak at the moment, but in time his posture will improve and strengthen, the way they need to sit on top of the horse pushes them to sit upright, and this will strengthen his core muscles.  So, why is he horseriding when Mummy is so ridiculously allergic?  (Honestly it's bad!)  Because why wouldn't I?  If Rowan was allergic, that's different, but he isn't, I am.  He needs this.  Rowan hasn't been having regular physio for quite a long time now, as he has gotten so weak, they haven't known what to do with him.  He started hydrotherapy, but that had to be stopped for safety reasons.  No one has been around to advise me, or help us.  I am the one who has spent hours researching, looking at what activities build up which muscles.  No one recommended horse riding, but as soon as I said he was doing it, the professionals were very enthusiastic about it.  Something else no one has ever suggested would be beneficial for Rowan, from any kind of perspective is a bike.  He can't ride a 'normal' bike, he doesn't have the strength, or the balance, and having accessories (drainage bag, TPN) means that it's not safe.  Why is there no professional helping me with these things?

So why didn't any other professional suggest a bike?  Something else I had to do by myself.  Because professionals don't seem to be able to see Rowan as a little boy, they don't see what I see, they don't see what everyone else sees, they see their speciality, not a child.  Rowan is now the proud owner of a bike.  It's a special bike, it's therapeutic, it's complicated as to how it's different to a normal bike, but basically he has to pedal more to make it move but by pedaling more, the effort needed is less.  Again, however it's normalcy.  Every other little boy his age has a bike, his brothers have a bike.  He now has a bike and he is very proud of it.  But once again, I was the one who had to look at the physio benefits, any potential issues, research what kinds of bikes were out there, and then try and find the right one, get quotes, and then apply to charities.  (Thank you Boparan Charitable Trust).

When I look at Rowan, I see a little boy, with a fantastic smile, a good sense of humour, an ability to manage the unmanageable, determination and a thirst for life.  He also happens to have some very specific and unusual physical health needs. Rowan just wants to be like every other 5 (very nearly 6) year old. he wants to go to school, he wants to have friends, he wants to ride a bike, he wants to go to beavers, he wants to play in the park, he wants to go on holiday to the beach, he wants to be a minion, he wants to go to parties and have friends over to play, and most importantly he wants to go and meet a minion (once we overcome the fear of 'people in costumes').  Rowan is a person, not a medical statistic, not an anomaly, not a hospital number, not an interesting case.  A child, an amazing child infact. 

When professionals look at Rowan, they see a system.  If they are a gastroenterologist, they see a gut, in Rowan's case, a broken gut, stomach distention, gut dysmotility, gastric output, blood results, weight loss/gain.  If they are a physiotherapist, they see weak muscles, poor posture, fatigue.  If they are an endocrinologist, they see a small hypothalamus, hypothyroidism, a lack of height, and blood sugar issues.  If they are the pain team, they see pain, chronic pain.

I can see those in Rowan, but I also see a little boy who deserves a quality of life.  He deserves to do these things that other little boys do.  And we just about manage them, by the skin of our teeth.  We do them, at a cost.  There is a price for Rowan to pay for being a little boy, and he'll pay it, over and over because he won't let his pain rule his life, he just needs a little hand with it.

Recently some decisions have been made, without my involvement, input or opinion, around Rowan's medical care.  When I have been informed of the new plan (after attending many appointments miles away from home, a plan was formed, a month later they had a 'professionals meeting' took place, and the whole plan was changed, the whole plan), I became very upset.  What I want for Rowan, and what Rowan deserves, often becomes blurred.  Rowan's quality of life often gets forgotten by doctors/therapists.  They have their goal in mind, and forget that their 'system' is inside a little boy.  I argued the plan, I tried to get my point across, my opinion, for the first time in a really long time was worthless.  The fact that I am the one that has to put this plan into place, against my instincts, is cruel and unfair, they are not the ones having to input the plan are they?  They aren't the ones dealing with the fall out of their plan, Rowan is, I am.  And there is more to my life than Rowan's medical care, more that it will affect.  There is more to Rowan's life, than his medical care, life that will be affected.

When you look at a picture, at a child, at a parent, at a situation, just remember there is more to the story,  There is always more to the story.  Don't judge their entire life on a snapshot.  Don't assume decisions you make are the right decisions for other people.  Involve people in decisions, however small they are.  

What you see, is not always what you get, you see what you want to see, or what I want you to see.  Don't just see, look.  Don't just hear, listen.

Unless it's this picture, this picture is exactly what it is.  If you want to see more this, come and like Rowan's page on facebook, Rowan's Reality, please.