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 😊

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!

    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.