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 😊

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

The beginning is a great place to start…

Oliver was born on the 20th October 2016 at exactly 5am. I had been induced due to a number of complications during the pregnancy. After 12 hours of labour (more or less to the minute) he arrived, he didn’t really make any noise but he was allowed to be placed straight on to my chest just before dad fainted….for the second time.

People say we had a rocky start to being parents…Mike fainting twice, the first time hitting a wall with his head and giving himself whip lash. Oliver being taken off us not once but twice, I was ill, they didn’t end up finding the cause of Sepsis but after a week and a half of being in hospital I was allowed home

So a few steps back. Just after the second time Mike fainted, I didn’t really notice this due to being completely overwhelmed with the baby that I had spent months thinking about, planning for, planning our future. After some tea and toast we were moved back up stairs and put back in our room, I never went to sleep. I just peered over the cot at him wondering how on earth I’d managed to create such a tiny perfect thing, whilst also wondering how he ever managed to fit inside me.

I’m not too sure how long after but one of the support team came in to help me breastfeed. Oliver didn’t take to it but I explained that I really wanted to, so they fed him with donor milk from a small cup (something I never even realised that you could donate) he appeared to be struggling but the lady had said that he sounded a bit mucusey so we put it down to that. The next few feeds were the same but he appeared to be taking some. He was also struggling to maintain his temperature, so had to be put on a hot cot. We were told that once he stabled his temperature and had been off the hot cot for 48 hours we could go home. This was what we were working towards.

The following day Mike went home to sort our dog out (Roo) and I was left alone with Oliver. I continued to express as much milk as possible (this is tiny amounts when you first have your baby) so that he had as much as possible off me and then would be topped up by donor milk. That night a paediatrician came in to check him over as it had been noted that his feeding wasn’t great. His overall tone was pretty poor as well but being a first time mum and never really seeing a baby that had just been born I had put it down to just being tired after birth. Oliver also had undecended testes. They mentioned that they thought he may have an infection so it best to take him away, they said he should be back in an hour (it being 4am I went straight back to sleep and being told by so many people to get sleep when you can I thought it an ideal opportunity) when I woke at 6 and he still hadn’t come back I panicked, text Mike to tell him they had taken him off us and I was going to try and find out what was going on. He walked into me crying walking down the corridor as I had found out Oliver was being kept down in High Dependency.

High dependency is not what you want to be told about while you are highly emotional and tired. Mike came down to the unit and we sat with him. We knew when he was born he was a small baby (all 5lb8oz of him) but compared to all of the other babies in the unit he looked huge! After two days of him being down there he came back upstairs to us and I was moved into a different part of the ward, where babies who needed slightly more care are kept. He now had an NG tube, we had spent two days feeding through this on the unit but we were told that we weren’t allowed to do it ‘behind closed doors’ up on the ward. I still don’t understand this. So coupled with the fact that we were wary of taking him out of his hot cot in fear of him getting cold, we also couldn’t feed him. These problems on their own are difficult enough but combined meant that we mostly just tickled his head, we occasionally got him out for a cuddle but he was wrapped up in so many blankets that we felt as though we were just holding blankets. Feeling like a mum or dad isn’t easy when you can’t do ‘normal’ things.

By this point I was so tired, emotionally and physically. It’s hard being on a maternity ward where you can hear all babies crying and you have a baby that isn’t make any noise and that you worry about cuddling and you can’t feed. I had a headache and asked for something for it. Later that night a nurse commented on my breathing and how it seemed laboured. After a quick temp, pulse and blood pressure check they started to worry. A heart rate of 130+ when not moving and a temp of over 38 they pumped some fluids in through an IV and then checked me every hour or so. Again Mike had gone home and when he came back something had changed. My pulse slowly got faster and my temperature didn’t shift. They took bloods but couldn’t work out what was wrong. Looking back now I can see that I really was poorly but didn’t realise it. My only focus was Oliver. They couldn’t look after me on the ward so sent me back down to labour ward where they could keep a closer eye on me. While we were down there Oliver came off the hot cot and we were so excited (we figured 48 hours and we would be going home and starting off life as a real family) the next day we went upstairs and Oliver hadn’t maintained his temperature and his tone hadn’t improved so they said they had someone come and check him over and continue giving him his antibiotics.

Later that day they sent one of the neonatal nurses up to check over Oliver and she explained that he was going to go for a scan. I queried why and said that we had been told his testes were there they were just tucked right up. She explained that the last brain scan that they had done wasn’t clear enough so they needed to repeat it. I stopped her and said that we didn’t know that he had already had one and asked why they were doing it. She explained that the low tone/floppiness that he has is linked to brain damage. To say that this knocked the wind out of our sails was an understatement. I’d never seen Mike cry before but the pair of us curled up together on the bed and sobbed and tried to process what was going on. We had previously googled ‘floppy baby’ and we learnt that medically this is called hypotonia and we looked into it and had realised that this problem happens a lot and that he would probably progress a lot slower than other babies. Brain damage was certainly not on our initial plan when having a baby. Mike had him growing up and playing for Everton and we would never have to work again because our boy would look after us. The results came back and we were told everything was clear. At this point our entire attitude and outlook changed. Brain damage would have been a real blow….anything else we could deal with now.

Oliver never came back up to my room he was kept down stairs in the high dependency unit. We were told that Oliver was going to have some genetic tests. Prader Willi Syndrome and Noonans were mentioned but they weren’t sure.  After a week of my antibiotics my bloods had improved, I had no headache and was medically fine. They said that I was allowed to go home if I wanted but they weren’t kicking me out. Sleeping in a room with a quiet baby that isn’t feeding is one thing, sleeping in a room without your baby for five nights while you listen to all the other babies cry is heart breaking and a constant reminder of how your start to being a Mum is not how it’s told in all the books or shown in all the films. Leaving the hospital that night without him was awful, I cried.

So far this story has been all doom and gloom. There were things that I haven’t mentioned that stopped me falling into a complete pity pit. The consultants that did the ward round started noticing differences in Oliver. We thought that we could see things but being a parent I think you tend to magnify every small thing that you see. His movement had already started to improve. Possibly due to the pulling on the arms that we were doing and the different things that the physio team had showed us how to do.

Oliver stayed in for four weeks. On the day that he was due, I arrived at the hospital and one of the nurses queried where Mike was. I explained that he was sorting out the bushes on the drive so that when we eventually got Oliver home it was easier to get him in and out of the car, she told me that the results were in and the consultant wanted to see us. Oddly we had a conversation that morning and Mike had said I bet because I’m not coming in you will get the results (there is a pattern of when he’s not there something happens) After an agonising wait we were sat down and we were told that his results show that he has Prader Willi Syndrome. We were shocked by it, I cried (before I was pregnant crying was a rarity from me) we were told to go home and process it and tell family. So we did. We both cried a bit as we left the hospital. I rang my dad and told him, his attitude was that’s fine we can work with that. By the time we got to Mike’s Dads we were ‘ok’ we told his dad with no tears, then to see my mum and sisters, again no tears. Mikes sisters, one had tears and the other didn’t…or at least not while we were with her. We explained to everyone that we have a bit of mourning to do for the child we thought we were going to have but we know that we were going on another journey. We explained about the condition and how he will slowly build up and catch up with other children and the issues that we will have with food.

I’ve questioned why us, I didn’t do anything through the pregnancy that I shouldn’t have. I’ve witnessed other couples arguing over who was going for a smoke first, I know of others that drank more than the occasional glass of wine. They came in and had their baby after us and left before us. I’ve realised though that those families probably wouldn’t have the same strength as we have and as much to offer him. I’ve been told on more than one occasion that children with problems only go to special families. Before Oliver came along I wondered how families cope with children that are disabled or special needs. They don’t cope they embrace it because at the end of the day the child is there’s and they will love it unconditionally.

We found a facebook group for PWS families and then from there on we were added to a different private group for UK families. The support and advice that they gave us was invaluable. By the time we had gone back to the hospital the following day ( we had been up late afternoon the day before between visiting families) we had already geared ourselves up and asked when we could get growth hormone and had a list of questions. The team looking after him were shocked to say the least. I think they expected our world to crumble a bit, which I understand but that’s really not how we work as a unit. A conversation later that day with the nurse who had told us about the brain damage possibility probably made it more clear why we were ‘ok’ with the diagnosis. I work for a Children’s hospice. I see families that lose their children and are dealt the worst cards in life. Having a child that may not be ‘normal’ but will live a full life is far better in our eyes than being dealt something much worse.
We are at home now, after the phone call that we received saying when do you want to take him home we’ve not looked back. We have a team of people coming out to help him. He’s still being tube fed but now at six weeks old we can’t believe that the baby that we started off with is now kicking his legs and moving his arms around. Watching the staff that come out react to how well he is doing is amazing and fills us both with pride. He can take 5mls in a bottle which isn’t much but it’s something, we don’t know how long the process is going to be but we are getting there. As I am typing he’s under his play gym trying to get the little mirror. He smiles, I’m not too sure if it’s at me or just while he’s around me but that doesn’t matter it’s the smile and it’s for me in my eyes.

I’ve started this blog after having a bad day emotionally. I’m tired, as any new parent is but I’ve figured that if I write through both my bad days and good days. I will always be able to see how far we have come and hopefully be able to show other new PWS diagnosed families how everyone’s emotions bounce but there is always positives that outweigh the occasional bad day you have

This journey that we are about to embark on isn’t what we had planned when we found out that we were pregnant but I can tell you that I wouldn’t swap this little chap for anything