Oliver update

I’ve realised that I’ve been quiet for over a month.

For a change it’s purely down to us being busy in a positive way. No hospital stays, no real Oliver stress. Just being busy.

Since the last time I wrote, Olivers seizures seem to have stopped. The fear of a phone call from nursery or family has reduced (unfortunately I think it will always be a worry) But it would appear his medication is now at the right level and keeping him balanced. We make sure that his baby Jebba has her medicine too and anyone else who’s to hand during medicine time

I’ve been spending Monday afternoons on a Hanen course. To help aid my communication with Oliver. Although he makes noise (and plenty of it) we’ve still not got any clear speech. So being able to help nudge him in the right direction is really important. There’s a number of things I didn’t realise he was doing until I slowed down and brought myself down to his level.

We have had a bit of a surprise and the chesty noise that anyone who’s met him can always hear. For those that haven’t he ALWAYS sounds like he needs to cough or clear his throat. Well SALT (speech and language) think that it may be due to a bit of aspiration so he’s now been given something to thicken all of his drinks and it seems to have helped. We can tell the days where we’ve skipped the thickener due to one reason or another. So hopefully we’ve sorted that before too much damage has been done.

Our signing has improved massively. I don’t know if it’s due to the course and me paying more attention and looking for different things or just the he’s had another leap in understanding but I now have a good idea almost all of the time what he’s after with minimal frustration.

If it was a leap then it would explain his eating habits. Feeding Oliver is a continuous stress. It’s the only part of his condition that we worry about and if he was a ‘normal’ two year old I’d put the fact he’s eating anything and everything and demanding food/having hissy fits when we won’t share, down to him being two. I honestly believe that’s exactly what’s happening. His legs have stretched out that’s for sure and cognitively he’s improving so it’s got to be why he wants the extra bits, but there’s still that tiny niggle at the back of my head that the reason he wants to eat is due to the switch in his brain no longer working.

Last week we did another ‘2 year review’ to see where we are and how we’re doing. We then did the 20 month review after ‘failing’ the other one. The only area he’s not keeping up with is gross motor skills. He can do pretty much everything a 20 month old can do skill and speech wise (or at least to some degree) but gross motor skills (physical movement) he’s in the black, not even in the grey. Which I’m ok with (I regularly have to repeat this to myself) because I am ok with it. We knew he wouldn’t be walking by the time he was two like most kids are. I think sometimes having it put down in black and white makes it just that bit harder.

The two year review was in prep for a multiagency meeting that’s happening at the beginning of March. No offence to anyone that I work with but this will probably be the most important meeting of the year for us. Getting everyone that supports Oliver into one room so that they can discuss how he’s doing, what he needs and what everyone’s next steps are. I’ve spoken to a few people about the meeting and I’m excited and worried about it. I’m grateful that we can get as many people as possible involved to help shape what’s going on but at the same time it makes me sad at the same time that I need to push for a meeting with physio, OT, Portage, SALT, local SEN team, health visitor, nursery and anyone else that we can manage to get there. I’m not ashamed to say that there’s days where I don’t want to need any of the teams to support him but I’m grateful that they do.

Now for me and my promises I made to myself at the end of the last post.

I’ve found a hobby

  • Yes I have found a hobby and I’m sticking with it. Running – who’d have ever thought my hobby would be running 😂 I’m laughing myself right now because before Christmas if you asked me if I had a hobby I’d ask if napping on the couch was one 😂 I have book club and love book club, but it’s only a meet up once every 6 weeks and I need something that I do weekly to keep me sane. I didn’t realise I’d lost my sanity until I started going. I’m not a solo runner by any means I’ve been lucky enough to find a running group that suits my needs
    • They meet regularly
    • They aren’t highly competitive
    • They’re friendly (and a laugh)
    • They’re supportive
    • They like being social

    I went on my first run on the 9th Jan. I’ve had a week off due to being ill but I’ve managed to get up to being able to ‘run’ for four miles without really stopping. I can definitely do 3 without stopping. I’m not fast and I probably resemble Phoebe from friends as I run but I feel so much better for it and it’s transferred into every aspect of my life. My head actually feels clearer. I didn’t realise that I was suffering with so much brain fog until it went away!

    Some reflective time

    So the end of 2018 is here

    The thought of looking back over the year brings mixed emotions.

    At the beginning of the year Oliver couldn’t crawl, weight bear and definitely not pull himself up. We end the year with a speedy crawler that enjoys being on his feet (with plenty of assistance but he is determined to get there on his own)

    He also didn’t really sign or communicate too much and often got frustrated because of this. His frustrations are still there but he’s now trying to say things and will sign several things to us. Sometimes this is a guessing game as he confuses signs and has made a fair few up himself. His speech is still delayed but coming along nicely. Everything he can’t say is woo woo. For those that don’t know our dog is called Roo. Woo is Olivers best friend, partner in crime and often the follower of Olivers mischief. She also doubles up as a hoover when he throws (much to our delight) his food

    We’ve had so many conversations over the year about how well he’s doing. How he’s exceeded our expectations and the point we are at now we never expected to get here so quickly. That’s not even between Mike and I, that’s with health professionals, family and anyone else who’s directly involved with him.

    This however doesn’t mean that it’s come easily. There’s been tears. Lots and lots of tears. Many times where we’ve both been fed up, Olivers been fed up and if it were possible to call it a day and press a restart button then we probably wouldn’t be far off doing it

    As far as breaks and rest have gone this year Oliver probably doesn’t realise that time off work should be time to do fun things. A week off in May he had impetigo so we were housebound because it’s contagious. We tried to go away on our first family holiday and Oliver had other ideas and spent the first three days having seizure after seizure. Then Christmas holiday time….he gets chicken pox. So all in all on the resting front we’ve not really had much opportunity for that as the other allocated holidays in work went on appointments.

    This in itself has taken its toll. In the new year we’ve agreed to start sharing out appointments. One thing I never write much about is appointments. I write positive posts about how well we’ve been doing. I did promise myself I’d write honestly and for the most part I do but I often skip writing a post when there’s no energy to even cook tea never mind put a piece of me into a blog. Over the year I’ve weaved at least full time additional working week into my four day working week. Early starts and late finishes. Working on my ‘day off’ That probably doesn’t sound like a lot to some people but trying to balance out being two different fronts in a day is exhausting. Working additional hours not to have extra time off but to go to an appointment and fight for your child isn’t the ideal.

    Getting up as mum, dropping Oliver at nursery or with one of his grandads and then going to work. Being work me, taking work me’s head off and putting mum head on, going to an appointment and fighting for what he needs/what we want. Drop him back off, process an appointment and then fill everyone in on what’s gone on, answer questions. Get back into work me and finish the day off…come back and be mum again, then be a physio, do some more signs. Take him to bed. I’m not really too sure where I actually am in the story. All spare time is spent researching how I can help Oliver and then bathing and sleeping.

    It. Is. Exhausting.

    People often wonder why I don’t fill them in on every little thing that’s happened/going on. It’s because it’s exhausting. I appreciate everyone wants to know but mentally it’s not always the easiest thing to do. I’m not intentionally withholding information. I’m just waiting for when I’m in a place to pass information on comfortably. Sometimes I just don’t want to talk about it. We have on average 2 appointments a month, sometimes more sometimes less. They’re often like buses nothing for a while then three all at once. We already have four booked in for next year.

    One of my New Years resolutions is to make more time for myself. For me to be me, that person I was before Oliver came along. It’s a thing a lot of mums struggle to do but I think that anyone that has a child with any additional needs, struggles with even more because of all the additional pressures of making sure you haven’t missed anything.

    I’m looking forward to 2019, no new year new me here. Just another calendar year where I’m trying to find the right balance.

    Diagnosis day – two years on

    It’s been a whole year since my last diagnosis day post. It’s gone by in the blink of an eye, I really hope the rest of his life doesn’t go the fast because I really can’t keep up!

    This year is probably not as upbeat as last year. I feel like we’ve had an awful couple of weeks.

    Fortunately for us we seem to have managed to get our head around pws and life was running quite smoothly. All the professionals we need at the moment are in place. Olivers doing far better than we ever expected him to be doing at 2 years old. Especially after being given the bleak summary by that neonatal doctor.

    I imagine you have sensed that there’s a but in here…and there is.

    Olivers seizures have become worse and the pattern of him being unwell to cause them has disappeared. In October alone he had 19, these are only the ones that I’ve managed to log as well. More could have happened with us being unaware because we hadn’t really been looking for them. Don’t get me wrong I know this isn’t as many as other children have…but it’s considerably higher than the general population.

    I am now back into an undiagnosed fuzzy state. I feel lost and helpless. I keep attempting to convince myself that in 6 months time I’ll be looking back and wondering what on Earth I was worried about…unfortunately that’s still 6 months off and it feels like a very, very long way off.

    My head is racing and I’ve now found that trying to concentrate on anything at all is hard work. It’s taken me a few days to pull this short post together.

    I find that every little thing he does makes me wonder is it normal odd child things or is it seizure activity

    They have said that they are pretty sure it’s epilepsy but EEG’s aren’t confirming that and we’re waiting to hear about our MRI results. He’s on medication now and it seems to be working. He’s still had a number of seizures on it but they have calmed down and after a three day stay in hospital with ones happening every few hours it’s a relief to be able to deal with maybe one or two a day. The only downside to medication is that I now don’t know if his change in personality is age, seizures or the medication. Two year olds have tantrums and push boundaries but a matter of weeks ago he was so laid back that he was horizontal…now he claws my face and throws himself everywhere.

    So approach with caution, my reactions tend to be quite delayed and often don’t make much, if any, sense. If you’ve asked a question and stare at you looking a bit blank it’s probably because, although I’m physically with you, I’m mentally somewhere else and it’s often completely unintentional, so just repeat yourself to make sure I’m listening.

    We are two!

    We’ve been responsible for another human for two whole years!

    What a learning curve it’s been and if I could go back to this day two years ago I’d tell myself not to worry, it will all be ok. There’s more tears than I ever could have even imagined that there would be but after each time I’ve been pushed to the point of being unable to control my emotions and let it all out, I’ve got right back up, brushed myself down and gone head first back at it all again. I would tell brand new mummy me that there’s far more strength hidden than you can imagine and to just keep at it.

    In two years we’ve gone from expecting the absolute worst to being surprised almost daily. Olivers two year review is coming up and I can tell you that a large chunk of that list that’s expected of two year olds we won’t meet, and I’m ok with that.

    I am ok with that

    12 months ago I probably wouldn’t and I’d have had a breakdown and go completely introvert over it and not talk about it.

    Types of things they’re going to expect:

    ❌Independent standing and even walking independently

    ✔️Responding to his name

    ✔️Talking

    ✔️Independence

    ❌Brick building

    ❌Kicking and/or throwing a ball

    ❌Put two words together for a short sentence

    I can tell you what he can do!

    Find fun in anything that’s not an actual child’s toy. His number one ‘toy’ at the moment is a smalls peg dryer. To those that are wondering what that is. You know that plastic contraption that you put socks and knickers on, on your washing line? THAT! It is a wonderful noise maker.

    He can read a book to me, well maybe he can’t read it, but he can imitate reading by running his finger across the page over the words and make noises as though he’s story telling

    He is emotionally aware. If I’m sad he’s sad, if I’m happy he’s happy. He understands emotions and processes them accordingly.

    He mentally stores things and brings them back out later. Like watching you pretend to be asleep and then later do the same thing

    He can, and will, wave at every single person that he sees and has an unbelievable way of just making people smile by being him

    He understands every word that you say.

    I could have a child that ticks every item on the list that the nhs says they ‘should’ be doing by age two…but chances are they wouldn’t have half the personality, half the imagination or determination that Oliver has. Life would be much easier and there’d be much less worry than we currently have but I wouldn’t want to trade that for the hilarity, surprises and pride that we have each day.

    Life isn’t always easy but loving him definitely is 💙

    Our first family holiday

    So I’ve been quiet for a little while just getting on with life and after a week to ourselves thought it’d be a great time to do an update.

    I’m currently on a sun lounger, Oliver has gone for a walk with Mike and I’m casually waiting for the sun to come back around to our spot around the kids pool. Our first family holiday is in Turkey at an all inclusive hotel. If you’d ask me, up to Oliver being about 1, about an all inclusive holiday I’d have probably cried. My family have always done all inclusive and the thought of not being able to do was heart breaking for me. But here I am, in an all inclusive resort having our first family holiday.

    It’s not gone without stresses and strains. If you spoke to me the week before we were due to leave, I wasn’t going. Mike had been unwell and on antibiotics the two weeks before we were due to fly and we were convinced we weren’t going and would have to cancel. The Friday before we were due to go we had the all clear and we went into sorting mode. Everything washed, ironed and packed in two days. Sorted parking the morning before we went, uncancelled the cancelled dog walker and house sitter. 5am came and off we went!

    Car packed up and to the airport, slight delay on the flight but this fine as it meant more mooching time in the airport.

    So the thing about pws (and all the wonderful additional complications that come along with it) that we have found is that it likes to show up unannounced. And it doesn’t creep up and tap you on the shoulder, it throws a bag over your head and drags you off to a dark room. We’d found our gate number and got to the gate, waiting for them to start calling our seat rows. Changed Oliver’s nappy and then Mike nipped off to the loo. Check my phone ready to tell people we were going to board and look over at Oliver

    Oh shit

    He’s having a fit.

    Over the past few months we’ve started having testing for epilepsy. He’s having two different kinds of fits. One is your typical convulsion style and the other more of a drop attack.

    The thing with pws that we struggle with is poor temperature regulation. He gets hot very fast and cold very fast. He also doesn’t show us when he’s sick very well. He is snotty very quickly and that’s normally a sign but this time absolutely nothing at all hinted at him being ill. Febrile convulsions are common in children and are caused by a sudden change in temperature. Our current complication is that his temperature isn’t changing so this is why they’re leaning towards epilepsy rather than it being febrile convulsions

    He was full blown seizing and I’ve had to drag him out of the buggy and get him onto the floor. Luckily the gentleman sat opposite could see what was going on and asked to get my husband (then was not the time to correct him about my martial status ) so I said ‘please, he’s called Mike’ He came out and Oliver had managed to come back round but was dazed and wanted to sleep. Mike went off to speak to the staff and then next thing a paramedics is with us and Olivers coming round and getting ready to do his flirting routine. We were then shot over to Whythenshaw hospital in an ambulance to get checked over…on the way another one happened. No temps, nothing obvious wrong. At the hospital did bloods and monitored him and couldn’t find anything wrong. Oliver was in full on flirt mode so we figured he must be ok and tried to get to turkey again.

    After trying to sort over the phone it felt like we were getting no where so we went back to Manchester airport and started all over again.

    Flights sorted

    Check in done

    At flight gate

    Made it onto the plane and yes we’re ready for take off.

    Cabin crew get ready for take off

    Another fit

    Yes that’s that right he went off again, slept for for an hour, all as we were going up into the air. Spoke to the stewardess and explained the situation. Then two hours later…another one.

    Land and get our visa and through to pick our baggage up and he has another.

    Two more in the hotel in the morning.

    At this point mike and I had absolutely no idea what to think. What do we do. Do we go home. I speak to mum and she sends me money to arrange flights. We go to find a doctor to get him to checked him over and it turns out he has tonsillitis. (Still unsure why Whythnshawe hospital hadn’t picked this up) so were given a prescription for antibiotics, paracetamol and ibruprofen and sent on our way. We spent the rest of Tuesday on egg shells and he had another fit that afternoon. This fit happened after this photo was taken. He’d spent time in the pool and having fun

    I imagine you’re probably wondering why we went ahead and got on the plane. At one point I was as well but I can hand on heart say if I had thought the additional fits would have happened I would never ever have even considered rebooking flights and heading over. Work colleagues will tell you that in my head I wasn’t going away so wouldn’t have been bothered if we didn’t go

    I’m writing this post on Thursday after starting out holiday journey Monday morning. We’re now 48 hours fit free. We are however around 8 ice creams down, we’ve probably dried a cow the amount of yoghurt and milk we’ve got through.

    To the pws families who are probably horrified that he’s surviving on that, not that I have to defend our choices, but we’re on a holiday. He never has it at home and if you’ve ever had tonsillitis it is the most horrendous illness. All I’d want to eat is icecream (after having tonsillitis enough times to have my tonsils out I can vouch for doing this) and finally some food is better than no food, especially on 30 degrees plus heat.

    Tonight our aim is to get to the kids mini disco. Which I’m probably more excited for as I LOVE the mini disco and I can bet Oliver will love it.

    All in all…I’d do another all inclusive while we’re still in this stage. While he’s not food seeking and we aren’t having any of those issues (we’re still on high energy milk because we can’t get him to put weight on) for you newly diagnosed parents, don’t write anything off. I thought I’d have to stop the ‘normal’ world and go to another planet.

    We’re still firmly on the normal world

    I’ll finish the post up with photos of a very memorable first family holiday.

    Prader willi awareness month

    So May was prader willi awareness month which I intended on hitting full force…and well this fell on its arse a little

    But I’m ok with that

    First the first time in months and months I’ve been able to lift my head and just get on with family life. We’ve had appointments and what not still but I’ve been able to just enjoy the three of us. It’s crazy to think that in the 19 months Oliver’s been around this is the first time this has actually happened but I’m in a good place!

    So!

    Positives that we can share that have happened. We can now pull ourselves up. It’s a completely unconventional way but that’s how we roll in our house! Why do everything the ‘normal’ way…that’s boring!

    We now have the fastest commando crawler I’ve come across. Getting from the play room to the kitchen in the blink of an eye. We can finally sit ourselves up unaided (I genuinely never even realised this had happened until I started noticing him sat up everywhere and spied on him)

    We are starting to sign and gesture way more. This is making life so much easier for us. I don’t know what we’d do without the signing (well I do, we’d have a much more agitated child)

    My personal favourite- arms up and grabby hands because he wants to be picked up. However this has also caused some heart ache as he will also go to anyone, and I mean anyone. He will throw his arms up to be cuddled by people he’s never even met, we will have to keep on with the stranger danger chat 😉

    He dishes out kisses now. Especially to cuddly toys and it’s so cute. He loves to cuddle and he knows when he wants to cuddle and there’s no escaping (another favourite of mine)

    A shout out to those who embraced go orange on the 25th with very very short notice, I didn’t get sent photos from everyone, some where snapchats but it never fails to remind me how far from alone we are in everything that is going on. The improvisation from some people made me howl. Oliver doesn’t have just Mike, myself and Roo as cheerleaders…he has our family and friends right there with us! We wouldn’t be as on top of things as we are without you

    See you next year awareness month! Next time there will be much more awareness spread

    The ‘my child’s a genius’ moment

    Now I’m sure you can guess by the title that I’ve hit into a stage where he’s started doing new things very rapidly.

    I don’t know whether I had low expectations for what Oliver would do and when or I just abandoned expectations and took things as they’ve come and all of a sudden so many things are happening that I’ve had a wide eyed moment and thought ‘shit my child’s a genius’

    Don’t get me wrong I don’t think he’s going to ever astonish people with his IQ and I can clearly see that he’s doing things that all other children are doing….but he’s my child and I made him (with a bit of help from Mike) and he’s doing so many new things that he’s constantly amazes me. No one tells you when you have a child much other than ‘it’s the most amazing thing’, ‘you’ve never know a love like it’ and ‘it’s hard’. I’m sure every mum has that moment where they look and go ‘bloody hell look at what you can do! I’ve only shown you that once and now you’ve mastered it’

    Photos now take a couple of takes …

    Olivers brain seems to have had more ‘sponge power’ since he’s started growth hormone. He’s grown, he’s put weight on, he’s much more vocal and now he’s ‘doing things’. He’s not walking, he’s only just (by the skin of his teeth) commando crawling. He is, however, the fastest roller in nursery and is now solving little puzzles like his lock a block and his ball tube without any problem. My new favourite is blowing a kiss, he can’t blow a kiss and what he does is comparable to a nazi salute or someone acting out taking their hat off to greet you good day BUT I know exactly what it means and now you do too! This is my favourite part of having a child, being able to look at him and know exactly what he’s after, when he’s not right. It is by far the most amazing skill (other than patience) that he’s taught me. I didn’t think it’d be him teaching me.

    He is the happiest little soul and I’ve now been informed that all visitors to the nursery have to give him a high five when they come in the room, he also loves to dance with Karen and the girls. Portage was even impressed when we started with a language bag and he managed to get all animals bar the sheep correct on the first go. He has amazing concentration and has a keen eye for where you’re hiding things and picks things up so quickly that mummy and daddy need to start watching what they say just in case!

    There isn’t really much purpose to this post other than to boast about how well we’re doing, I don’t think it’s the ‘norm’ to be as excited by ‘where’s your head?’ Or ‘can you point at the piggy for me please’ as we are but our norm is different to everyone else’s

    For the parents of all children out there, especially the ones who develop a little more in their own time rather than the doctors and health visitors schedule, enjoy every moment as I’m already starting to realise that time is going far far too fast and I wish I could slow it down!

    Often referred to as the ‘beginning of the end’ this is Olivers first forward movement. We’ve waited a lot longer than other people to get to this point….I may regret it at a later date but I say bring on the end!

    All I want for Christmas….

    Good old Mariah Carey, what’s Christmas without that being belted our after a drink or twooooooooohoooooo?!

    Well if you’d asked me what I wanted for Christmas it’s pretty much the same as last year. Growth hormone. Not for me, for Oliver.

    This year I must have been extra good and I’ve ended up top of the nice list as we’ve managed to get it just before Christmas. We’ve just done his first injection this afternoon.

    For those who aren’t a pws family, so don’t know what growth hormone is needed for, it’s needed for everything. His growth (hint in the name there 😉) but not just physical growth that you can see in length and waist size, it’s muscle tone and the most important thing for us is helping his cognitive development.

    We know that even without growth hormone we will crawl eventually, we will walk eventually and catch up with everyone, eventually. Growth hormone can help Olivers IQ. It’s a spectrum condition and he could sit anywhere along it for every different aspect but for us getting him to a position where he can understand what is going on with him, it has the potential to make everything that little bit easier.

    We’ve noticed a few new tricks over the past few weeks. Waving hello and goodbye (this takes a little bit of coaxing) but ask him to clap for you and he’ll go for it. He’s also started dancing. I think this has been nurseries favourite thing that’s happened. Last week I sat with Karen dancing on the floor to Christmas carols before we left nursery to go home. This boy has rhythm and music makes him so happy.

    What else makes him happy?! Snow of course!

    ….. and this red liquid worm thing!

    From all of the Edmond-Jones household. Merry Christmas everyone

    Inchstones are like buses

    It would appear that we’re going through some kind of developmental leap.

    In the past week we’ve learnt (this is the royal we, so it’s all Oliver) to roll from our stomach to our back, how to shift ourself forward and how to copy some sounds.

    We had met a bit of a plateaux and for a little while we were just plodding along and we were perfectly happy with that as it’s only what we have expected.

    We very quickly mastered getting from our back to our front, the first time it happened was a Saturday and he looked genuinely shocked that he could see the world the correct way round again, by the end of the Sunday that was it! We were a pro, we managed to get from front to back to front again. We have MASTERED the roll, this comes with new problems and means that he’s now pushing himself to try and do different things…it looks like he may want to crawl but hasn’t quite mastered that technique just yet. I don’t doubt that it will happen soon and then I will have to keep my eyes on him constantly.

    A new fun game of rock the bouncer has started, this adding a new stress as he can’t be put anywhere without the ability to get away/hurt himself. his stomach muscles have improved so much that he can lift himself forward to lean over to grab his toes in the bouncer. Our bouncer is a chair that goes from birth through to about 2 or 3 years old so doesn’t sit in the same way as a standard bouncer, its more than likely going to tip itself up on him if he leans too far over.

    Our fancy new Breezi highchair has arrived and has given us the ability to start putting food out for him to feed himself. This has brought him on so much, it’s helped his core strength, his confidence feeding himself and also his mini person attitude. I am no longer needed for feeding, or at least, that’s what he thinks. We now have strops because I have hold of the spoon and not him. On Sunday he had his very first roast dinner, he seems to like it! He was keen on chewing away on his chicken and having some of his sweet potato mash, he wasn’t so keen on dad trying to help and dad trying to stop him throwing his plate and food across the room.  He is becoming a diva

    We’ve recently started nursery, only two days but just enough to introduce him to socialising and watch other children in the hope that he will want to copy what they are doing. He seems to have been a bit of a hit and has the other kids around him when I pick him up so something is going right, probably the most heart breaking thing about it was that he went there without a tear or even the bat of an eyelid to me leaving. it’s lovely that it wasn’t hard work and he wasn’t distressed but still I thought he’d at least not want me to go!

    Our newest fun thing to do is copy/respond to people. We can now copy the mmmmmmm sound. That’s his favourite noise and comes out on various lengths depending on how you’re talking to him. It’s amusing as I think he understands what we are saying, or at the very least that we need a response so hmm comes out. Our brand new all time favourite is telling him no, no, no and shaking our head and him copying.


    This boy is going to be an absolute character!

    One Small Step for us, potentially one giant leap in research

    What a day Saturday was! This was the first of many One Small Step events that we will no doubt be attending year after year. 

    So for those that have missed Olivers JustGiving page and what we were up to this weekend we’ve walked a massive 12.5 miles to raise money for prader willi research UK 

    As soon as we’d heard about the event we decided that we would sign up. Raising money, meeting families and going to four pubs while doing both it sounds like a perfect event for us and it was! One of the pws families own a chain of pubs in Stockport and had arranged a walk that took us from one end to the other. We started with breakfast in a pub FILLED with families. There were babies, some younger than Oliver, some older, brothers, sisters, nans, grandads, aunties, uncles…..I think you’re getting the picture. 

    I wandered around to see if I recognised any faces and found Catherine and Wills group and said hello! Every time I see William he looks bigger and stronger and Catherine always looks prouder. Catherine introduced me to another PWS mum who told me that last year her 7 year old son completed the whole walk. This is her 7 year old son who has prader willi syndrome. The syndrome that is often defined with poor muscle tone and therefore the kids get tired very quickly.

    Google would never tell you that a seven year old pws child could do this, the only way you learn these things is by integrating and going to things. Google would tell you that your future is bleak and that your child will be nothing but a worry. This little was also called William. Maybe it’s in the name? Maybe it’s the growth hormone? 

    I can tell you exactly what it is, he’s a product of his environment. He has parents that will do anything and everything for him and so far every pws parent that I’ve come across will move heaven and earth to get what they need for the child and will put everything they can into making their child be the best they can be. This is by no means limited to special needs parents, this is what every real parent would do! It’s just there’s heaven, earth and just a few extra walls for special needs parents.

    We ate our breakfast of porridge and bananas and got ourselves ready to set off along with about 300 other people. All of us in our blue OSS tshirts

    We stayed back and left last, there were seven adults, five kids and two dogs so keeping to the back meant that we could all keep together and not worry about getting lost. 

    At the back was a great spot. One of our new pws heroes, William, was at the back. He kept a steady pace and to say at times I felt a little over whelmed with how well he was doing is an understatement.m

    The day took from 10am through to around 5.30pm 

    12.5 miles

    Mud and lots of it. 

    Picturesque walk ways


    Not easy emotionally or physically but we did it! Oliver has his medal and in true Olympic style gave it a bite for the obligatory paparazzi photo 


    I’ve not hidden how not inTouch and uncomfortable I am with my feelings in my posts and this day had a lot of anxiety leading up to it.  For a long time I’ve kept my anxiety hidden and for those that know me really well, you know how stressed I can get over the strangest things. Spending a day with 300 other people who I don’t know and seeing families with older children and potentially looking into our future worried me. 

    I worry a lot. 

    I play it down a lot of the time. I worry about our future, I worry how I will be perceived if I’m not having a 100% happy day. I worry about how people will react to me saying about how scary the unknown is. Mainly because they say oh you shouldn’t worry you should take each day as it comes. That is FAR easier if you aren’t stood in my shoes. As an outsider it’s always been my favourite thing to say. I don’t really say it now, well I do, but I say it to other people so they can’t say it to me. I’ve found deflecting it and getting it in there first stops it being fired at me. I’ve also found just telling people positive things also helps conversation. Mainly because being a negative nancy doesn’t really get you anywhere and doesn’t make you a joy to be around. 

    On Saturday I wasn’t a joy to be around. I found that walking on my own with my own thoughts was a bit easier. Sometimes I’m a bit odd and I’m a bit awkward. Mainly because I don’t really know what to do with myself when my brains whirring away and I get lost in my spiraling thought process. 

    I’m lucky to have a huge support network around me. 

    I’m lucky that I had a team of 10 people with me.

    I’m lucky that over 300 other people care as much about this cause as we do

    I’m lucky that these events exist to meet new families

    Basically I’m lucky 

    I’ve no idea what the total amount raised was just yet and if you’ve read my post and wonder what the sponsorship will be going towards, to put it bluntly it’s Olivers future. It’s to help families just like mine get to the bottom of how we can stop the hunger, the hunger that won’t ever go away, it’s to look into new way of treating and managing the symptoms for the children and the adults who have pws.

    Without research we will never find the ‘cure’ that we’re looking for and finding a cure starts with hope…..and money. 

    So if you could spare anything at all Oliver, Mike and I will be extremely grateful along with every other pws family in the world. They can’t all say thank you but from all of us and the support network around us thank you. The support means everything to us

    Oliver’s JustGiving page