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!