So it’s been a while…

It has been a little while since we wrote anything. I know last time it’d been a little while as well.

So, what’s new

Well, since the last post we’ve been given an almost all clear from hearing, so right now, no hearing aids. The glue ear has almost fixed itself in his left ear and is still present in his right ear but his hearing has improved significantly so we go back in 6 months for a check up and then hopefully it’s all sorted.

We’ve had an appointment with ENT over his noisy breathing and his tonsils don’t look particularly large but we’re booked in at the beginning of Dec to get his adenoids take out. Then shortly after we should have a sleep study and we’re hopeful results will be a little better.

The toddler room in nursery is now his room at all times. He’s made a new BFF in a little boy named Ted. The pair of them are inseparable and Oliver is giggling all of the time with him. I’m yet to work out if nursery mean this in a positive way or not, as usually boys giggling together mean one (or both) of them are up to no good. Since moving up the change we have noticed has been enormous. He’s more confident and chatty (by chatty I’ve no idea what he’s saying but it’s with purpose) he certainly knows his own mind and still waves me off every day with no worry. Some days I don’t even get a kiss. The girls there love him and I genuinely believe that they cant wait to see what’s come in with him that day. We’ve moved off in the night garden and spiderman and we now like toystory, in particularly buzz lightyear. We’re finally over not wanting to wear clothing that has characters on but we’re struggling with shoes at the moment. He often doesn’t want them on and will only leave the house with specific items. I’m yet to decide if that’s pws or just a toddler thing. In the past month I’ve taken him in with no shoes, no socks, with specific toys or a combination of all. I’ve gone in one day with him with no trousers on because that day Oliver won. I’ve no desire to start a day off with him and me upset. He buckles at nursery and will put on what they ask so I won’t fight it. Potentially terrible parenting there but if I’m honest I’m happy for people to judge as I do so much other fighting for him that I only fight fights that I have to!

Leading on from him knowing his own mind. He’s definitely got his own fashion sense. Outfits are not complete without headwear. Before leaving the house he signs hat and we have to decide which hat we’re wearing. The toystory one is his current favourite but when we move on to our next favourite I fear the challenge of trying to find a hat with that character on! It’s looking like it may be Wallace and grommit at the moment and they aren’t exactly current!

We’ve had a out first proper kids party. To those who we’ve been to in the past we love you and consider yours a proper party…. But this one’s one where he’s been invited because he’s a friend. Not because they’re family or my friends kids. I did worry for a good while that he may not be able to forge friendships and may be cast aside because he’s a bit different. Watching him interact and do his own thing made me so proud. Again proving that he’s just as capable as everyone else when given the time to do what he needs to do. I was horrendously hungover and spent a good chunk of the time trying not to cry watch him. Hangovers and kids parties are a terrible combo and I have learnt my lesson to not do that again!

We’ve had some cinema trips too. These are a new fun thing to do. Mini mornings are ace and so much cheaper though. I’ve been to the cinema with him more than I’ve been with Mike in the past two or three years 😂

Speech is coming along although it’s still pretty delayed. He’s mastered maaaamaaaaaaaa when I’m not in sight and the same for daaaadaaaaaaa. He will shout from downstairs if I’m on the loo. I think we’ve done a great thing with the signing. Seeing other kids his age (far more chatty and coherent) he really is delayed but the signing has stopped him becoming frustrated because he’s still able to communicate with us. I’ve enjoyed watching him make up his own signs. If anyone sees him talk about mickey mouse 😂 that’s always a fun one to see!!

Seizures are still under control *finds some wood to tap* and we’re waiting for our next appointment to see what next steps are. Hopefully its just to keep medication in line with weight.

All in all we’re doing well!! We’re all happy and things are moving forward 😊

A step in the right direction

So we’ve been quiet for a little while. Mostly because we’ve been busy in a positive way. We’ve had a holiday and we’re planning our wedding so generally we’re doing something or other.

With May being PWS awareness month it seemed fitting to do an update post.

So what has happened since I last wrote a post…. *goes and checks last post*

We now have consistent signs and a good amount of speech. We say please for things we want and we say thank you (a lot) we even have a game that we’ve named thank you. He has some spiderman cards that he likes to put on you one by one and say thank you every time he puts it on you. We’ve mastered the word no. This has a wonderful waggy finger with it to ensure you fully understand the no, it’s highly entertaining.

Seizures are still fully under control (thank god) so that’s becoming less and less of a worry.

In nursery he is slowly moving up to the toddler room. He’s enjoying it so much that he will stand at the door of his current room pointing to get out of the room and into his new room

We have 100% found our willy. He doesnt like wearing clothes and at any given opportunity will strip off and do his best to get out of his nappy and have a play. We aren’t quite at the potty training stage just yet but we are getting there as he will tell me yes or no when I ask if he’s done a poo or not. We’re in no rush to do it, as with everything else we’re waiting for it to happen in Olivers time. I’m yet to work out if the outbursts over certain items of clothing is an issue or not. He could just be working out what boundaries he can push or it could be some kind of other issue…we will see!

We had our final review with portage and compared to how well he has progressed since we started. According to the tick boxes he’s only about 6 months behind cognitively and a little more physically but we knew that. He was a tiny potato that didn’t really move when we first met Roz. He couldn’t sit independently but now (this leads me on perfectly to my video) he is able to do this

Now please don’t see everyone’s lack of reaction as a lack of caring. There was a lot of this little step (physically small but its a huge achievement) on holiday and we discovered that if we pay attention to him he won’t do it but if you ignore him and video him in a stealthy way he will try it.

Now we just need to build up his confidence

Go orange day is Friday 31st so if anyone would like to wear orange and tag us in photos we’d absolutely love that!

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!

    A year on

    Hoping that Oliver would just magically awaken one day and be just like all the other babies slipped away week by week, four weeks to the day of him being in the neonatal unit we were told that the consultants wanted to talk to us as our results were in. 

    Mike hadn’t come into the unit that morning as he was trying to sort out our front so that when we eventually managed to get Oliver back home we didn’t have to fight the bushes to get him out of the car.  Before leaving Mike had joked saying ‘I bet because I’m not coming up they have the results’

    We’d established a very hamster wheel routine of get up, eat a bit of breakfast, go to the hospital, stay until around 1. Go home do a few bits and then either go back for the late afternoon feed or the late night feed and a cuddle. Then go home and sleep. 

    Or at least try and sleep.

    It’s not so easy to sleep when the little sausage you carried for 9 months isn’t where he was supposed to be. 

    So this timea year ago we were hopeful we’d get some answers and be able to start making some plans. 

    We’d been told what they were testing for so had already done a little bit of research but because there were a few things we couldn’t single into anything. We’d joined a hypotonia group as we knew he was floppy and we were reaching out to see if there’s anything we could be doing to help him.

    Ward round was about to happen so after frantically messaging Mike and ringing him to tell him to get up to the hospital because they have the results, we had an agonising wait while they checked over everyone else’s baby and we waited in the parents kitchen.

    We were called through and sat down and explained that the results had come back. 

    ‘The results have come back and he has something called prader willi syndrome’ 

    You know how in films when people are told about life changing news there’s a kind of muffled silence where your brain is processing news and can’t take anything else in – well that happened

    The nurse who we spent most of our time with cried. I cried. 

    Looking back, I thought at that moment I was sad. That I was upset that we’d not got what we wanted. We wanted a baby that we could just take home. I realise now that the cry was relief. There was no more unknown of ‘what if?’ , ‘why?’ , ‘will he come home?’ , ‘if he does will it be by Christmas?’ There was a new unknown but we knew there’d be a path that others had been down.

    We made a call to my dad and Mikes mum as they were in work and then went off to do the visiting to give out our news. A comment from Mikes Mum sticks with me, ‘you seem ok with it?’ 

    I think every couple are different when receiving life changing news. Some retreat, some take a while to accept, some go into denial. I’m fortunate enough to be in a relationship where we both have a mind set of ‘let’s just get on with it’. This news had the potential to make or break us and all it did was make us stronger.

    Being compulsive planners we went straight off and found groups. Every prader willi syndrome group on Facebook and the welcome and support that we received off the families was amazing.

    When I put up our diagnosis on Facebook I mentioned that if anyone has any questions please feel free to ask. I still stand by this. After the status went up and the likes etc that was a perceived support system. Only one person sent me a message to talk to me privately about it and ask the questions that I think most people are frightened to ask. Please, please never be frightened to ask about it, it’s also never too late to ask. Don’t think because you didn’t ask questions at the beginning that you can’t ask now.

    In the past year we’ve come so far, I’ve had wobbles but when I look at where we started and how Oliver didn’t move and wasn’t able to feed and now we have a baby that you can’t take your eyes off because he can roll himself to the hallway, we may not be crawling but we are sitting independently and we can shout dada over and over and over. Sometimes we remember to shout mum but it’s mainly dada. 

    The prader willi world we thought we were entering when we were diagnosed is so far from the truth of what we are currently living.

    For any newly diagnosed parents. As scary as everything seems now, I can promise that a year down the line you may not have forgotten all those feelings of worry but they will stop. I now have a crazy one year old, who other than being a bit slower with some of the milestones that babies are ‘supposed’ to have hit by now, you wouldn’t have a clue that anything was ‘up’ with him. He smiles and laughs more than any other baby I’ve come across and he makes me feel proud every single day. 

    For those that have stuck by the three of us all the way through and regularly ask the questions about what’s going on and how is he and how we are collectively, thank you. It’s not always easy but having people that are supportive makes everything so much easier. 

    Oliver at 1 month, 6 months and 1 year old