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 😊

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



❌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 💙

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

Our future is bright 

A few weeks ago Mike and I met with Catherine and Wills and I’m so grateful that she asked us to meet up. 

Since we’ve had Oliver I’ve not hid that I feel a bit alone and a bit anxious about his condition so when I got chatting with Catherine and she suggested meeting up I said yes straight away. 
It was only after saying yes I thought about how it may affect how I feel. I was excited about meeting Wills and seeing what we have ahead of us, I was also a little aprehensive. What if I didn’t like what I saw, what if I burst into irrational tears and can’t stop….what if, what if, what if. 

Wills was different to other two and a half year olds that I’ve met before. This wasn’t in a bad way by any means, he has a wonderful quiet and gentle little personality. He was intrigued by Oliver and wanted to show him all of his Mr.Tumble cards. I didn’t realise how many alter egos this character had….I’m sure that it won’t be long before I know them all and will eat, sleep and breathe them just as Catherine seems to be doing.

It was a huge relief to both Mike and I to see how well he’s getting along. He was much taller than we thought he’d be (seeing all of the usual stated facts you’d think anyone with pws doesn’t get past 5ft) he’s taller than my three year old nephew which was exciting for us to see. He’s cruising along chairs and tables so isn’t far off independent walking. He understood everything that was being said to him and he’s signing to show mum what he’s after. Another thing we’ve expected to need to learn and this has reinforced it. 

Just as we were about to say goodbye Catherine was a little teary and I think that it’s probably a flash back for her looking at Oliver, Mike and I and it was definitely a reminder of how far Wills had come along. 

One thing that we’re discovering (after google gave us the fright of our life when we first found out his diagnosis) is that the older pws children are our inspiration and the drive and hope that we need to get through the tough days. It’s not easy seeing other babies the same age and younger being so much more robust and sturdy in comparison but that’s made so much better by meeting families like Catherine and Wills and seeing that we will get there even if it is slower. I’ve heard this week that one of our older pws inspirations have got B and C gcse grades. I know people who haven’t had to face all these difficulties that never managed to get those grades. 

Life no longer looks so much of a worry. We’re optimistic and the sky is the limit for our little man. 

We left Ottos with a huge weight lifted off us, a weight that I wasn’t overly aware was sat there. We were on a complete high and spent the entire day chatting about them. I don’t know whether it was seeing our future and how it really isn’t as bad as we thought it would be or sitting and having a conversation with someone that’s gone through all of the same worries and stresses as we have, she had a complete understanding of how we feel and could give us answers to questions because of first hand experience. This is the first time since Oliver was born that I’ve sat with someone and talked and not felt worried about how my reaction  may effect them. I know if I’d got upset that it wouldn’t have mattered because she’d understand that feeling at that time because she’d been in that exact position before. 

We’ve also had our genetics appointment since meeting them, we were quite shocked that the genetics team couldn’t really offer us any information that we didn’t already really know. We’ve also learnt that health professionals can quite often bullshit their way through things. I do not mean you should never listen to health professionals but when someone tells you that they have a lot of experience with pws children/patients and then in the following sentence tells you that we won’t get growth hormone soon (as in before two years of age)  then she either didn’t have a lot of experience with this genetic condition or she doesnt know as much as she thinks. Even after informing her that we know he will get it she again denied it would happen and we pretty much had to agree to disagree.

We’ve gone from being under the impression it was deletion to her baffling us and asking for Mikes blood to check to see what the chances are of it happening again. For those unaware there are three different genetic causes for pws and only one (as far as we believed) would be something that could happen for future pregnancies. This isn’t the one that we believed Oliver has.

We’ve also been given guidance on our next pregnancy and the testing that we can have and being informed that we couldn’t get a medical termination if the results where positive. Now I don’t know what you think when you hear the term ‘medical termination’ but Mike quite rightly said that surely it’s a matter of ethics and it’s our decision? After some back and forth we then established that she actually meant that there would be no advice to terminate as it’s not a life limiting condition and we’d have to go through the ‘normal’ termination process – what ever this may be. We then explained that we would use the tests to prepare ourselves, to not go through what we have just been through. The agonising wait and testing that we went through when Oliver was born, waiting for test results for brain damage etc knowledge and preparation would have made the situation a little easier. Not painless – just less stressful

To sum up our genetics appointment it was more a waste of time than anything. I don’t feel that who we spoke to gave us anything that we actually needed and we feel that we were challenged then dismissed on things that we brought up. 

This was disappointing for us. We know that there are so many rare genetic conditions out there so we understand that they can’t know each one inside out – we just ask that people are honest about it. We’re ok when (as my gp did) we are told that they know the very very basics and we will have better knowledge of everything going on. 

We’ve now got to sit and wait for the blood results to see what the future may or may not bring.

We aren’t living that far ahead though, we’re just trying to enjoy each day as we have it.

Finding time to reflect

So I’ve set myself the task of looking back from time to time.

We all spend so much time fixated on achieving our next goal that we sometimes forget to look at back at where we started.

From a personal growth point of view I think I’ve learnt how to be more open. I now can let people know how I am feeling. Something that I’ve always bottled up and pushed to one side. I’ve finally managed to use the words ‘I’m struggling’

Before Oliver came along I’ve never ever admitted that. How can you get to 28 and never admit that you’re struggling? I haven’t even used it in terms of juggling getting a baby ready and sorting myself. I’ve used it in the emotional sense.  Struggling would probably be an understatement for how I’d felt the day I’d used it. It was a bad day, Oliver pulled his tube out, I had a mad panic to get him ready to get out of the house and up to the hospital to get it replaced and finish his feed, get home, feed myself and get myself to baby massage. I didn’t get to baby massage. I got back into the house and cried. Not because I was sad but because I was frustrated. Being a creature of habit and a compulsive planner I know how long it takes to do everything and can always plan my days so that I’m able to get out and to places on time. That went out the window. That’s an emotional strain on me straight away because I get stressed when things aren’t moving smoothly. Then to go up to the hospital to get the tube put back in after seeing his beautiful little face without a giant teddy bear sticker holding down a tube is hard. I know that he needs it, he wouldn’t survive very long without it but I love that little face, he looks so different without it.

I think emotionally it tugs at me seeing him that way because in my head that’s how my baby should be. I’ve accepted he has what he has but it doesn’t stop me still having moment of weakness where I could be like all the other mums I know. No tubes, no extra stuff to sterilise, not having hundreds of appointments, being able to make your own judgement calls without having several different health professionals telling you that you can or can’t do that.

I was also tired. I’ve complained about being tired before I had the baby. This is a whole different kind of tired to what I knew before having a baby. This is ‘cant find the right words’ tired, for those reading this that haven’t had a baby and think you’ve been tired. Imagine the time you were most tired, now imagine doing the same thing day in day out and loving almost every moment of it but not getting that one full sleep that you need to recharge. Before you say it,  whoever made this line has also never had a baby, ‘sleep when the baby sleeps’. Do you know what you’re doing when the baby sleeps? Everything that you’d normally try to fit in the day. Cleaning, cooking, eating, bathing and even going to the toilet.

I seem to have digressed a little here. Anyway I’ve finally admitted when I’m struggling. I typed the text through teary eyes and flopped onto the couch and ordered a yogbar. Did you know you can get that delivered? Well I didn’t and you have to spend £10 to get it delivered. I’ve now got a stash of it in the feeezer for ’emergencies’ I realise now on reflection that:

  1. That wasn’t an emergency but I’m glad I ordered yogbar in
  2. I felt so much better for telling someone I’m struggling
  3. I wasn’t actually struggling emotionally from a mental perspective it was struggling emotionally from being tired, so very, very, very tired.

So emotionally I have grown, I feel I may have matured and that’s why I can hold my hands up now and tell people how I feel.

As a couple – now those who know mine and Mikes relationship know that we aren’t soppy. In fact we’re probably the complete opposite of what teenagers imagine a proper relationship is. He’s my best friend and my rock. I talk to him about everything. Probably far too much sometimes and share things that no one wants to know.

For the highly strung individuals we are, our relationship is built solidly on trust and we’re both incredibly independent people so we both have our own friends and go on our own nights out. We have high expectations of each other that we never seem to have to discuss but we seem to maintain them without any problems.

I knew when we found out we were pregnant that it’d change our relationship and that when the baby came it’d change our relationship again. I never realised how much having baby can change a relationship. I think we’re both now more patient with each other and I’ve found new things about him that I love. I’m so glad that we’ve both grown together and stayed just as united, if not more, with everything that we’ve gone through because it hasn’t been easy and it’s not always going to be easy but I’ve realised more than anything that no one else out there could be a better dad for Oliver.

Now for Oliver.

When I started this blog I’d been left in for the night while Mike went on a night out. For the first time in a month or so Mike and I had spent the night away from each other. Not for long, just a few hours but when you’ve been side by side for so long (pretty much from mid October we were like Siamese twins right up until his return to work in January) I was left with my own thoughts, which is dangerous at the best of times. In the two and a bit months since Olivers been home he’s progressed so well. I have moments where I feel like we aren’t getting anywhere but:

  • he’s gone from drinking 5mls to averaging 60mls a time and has even got up to the occassional 90mls recently.
  • He has started smiling and laughing and his little personality is starting to shine through.
  • His weight has now more than doubled since birth and he’s finally out of newborn clothes and into 0-3 month old. I did get excited I think that he was in 3-6 month clothes….he is NOT that big yet but it amused me to no end looking at the size of the 3-6 month clothes on him and remembering that’s what the new born clothes looked like when he was born.
  • He now has the most gorgeous rolls. They’re on his thighs and his little arms. I can grab his little chest and shout ‘boobies, boobies, boobies’ at him (he finds this as fun as I do) and he also finds it hilarious when I shout ‘pooooey’ when I open up a dirty nappy.
  • I’ve finally found someone who finds me funny and appreciates my daft repetitive songs.

My post cover pic is evidence of how well he’s getting on. That skinny little baby is well and truly gone

He came home pretty much like a little doll that didn’t really do much and he’s now a baby, he’s my baby and I’m so proud of every little thing that he’s doing. 

Whys Roo getting in on my photo?!