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!

    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.

    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.