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