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!

    The ‘my child’s a genius’ moment

    Now I’m sure you can guess by the title that I’ve hit into a stage where he’s started doing new things very rapidly.

    I don’t know whether I had low expectations for what Oliver would do and when or I just abandoned expectations and took things as they’ve come and all of a sudden so many things are happening that I’ve had a wide eyed moment and thought ‘shit my child’s a genius’

    Don’t get me wrong I don’t think he’s going to ever astonish people with his IQ and I can clearly see that he’s doing things that all other children are doing….but he’s my child and I made him (with a bit of help from Mike) and he’s doing so many new things that he’s constantly amazes me. No one tells you when you have a child much other than ‘it’s the most amazing thing’, ‘you’ve never know a love like it’ and ‘it’s hard’. I’m sure every mum has that moment where they look and go ‘bloody hell look at what you can do! I’ve only shown you that once and now you’ve mastered it’

    Photos now take a couple of takes …

    Olivers brain seems to have had more ‘sponge power’ since he’s started growth hormone. He’s grown, he’s put weight on, he’s much more vocal and now he’s ‘doing things’. He’s not walking, he’s only just (by the skin of his teeth) commando crawling. He is, however, the fastest roller in nursery and is now solving little puzzles like his lock a block and his ball tube without any problem. My new favourite is blowing a kiss, he can’t blow a kiss and what he does is comparable to a nazi salute or someone acting out taking their hat off to greet you good day BUT I know exactly what it means and now you do too! This is my favourite part of having a child, being able to look at him and know exactly what he’s after, when he’s not right. It is by far the most amazing skill (other than patience) that he’s taught me. I didn’t think it’d be him teaching me.

    He is the happiest little soul and I’ve now been informed that all visitors to the nursery have to give him a high five when they come in the room, he also loves to dance with Karen and the girls. Portage was even impressed when we started with a language bag and he managed to get all animals bar the sheep correct on the first go. He has amazing concentration and has a keen eye for where you’re hiding things and picks things up so quickly that mummy and daddy need to start watching what they say just in case!

    There isn’t really much purpose to this post other than to boast about how well we’re doing, I don’t think it’s the ‘norm’ to be as excited by ‘where’s your head?’ Or ‘can you point at the piggy for me please’ as we are but our norm is different to everyone else’s

    For the parents of all children out there, especially the ones who develop a little more in their own time rather than the doctors and health visitors schedule, enjoy every moment as I’m already starting to realise that time is going far far too fast and I wish I could slow it down!

    Often referred to as the ‘beginning of the end’ this is Olivers first forward movement. We’ve waited a lot longer than other people to get to this point….I may regret it at a later date but I say bring on the end!

    Getting from tube to no tube – April update

    So I promised that I would update everyone on how the feeding is going from time to time

    It’s been an up and down journey to say the least. 

    My last feeding post click HERE to read it.

    As a brief recap in December we were taking 15-20ml a feed by bottle and the rest through the tube. 

    We slowly managed to get this to pick up but in January/February Oliver decided that he didn’t want to take any feed at all anymore, he’d gone from taking 70ml a feed to next to nothing. He would just chew on the teat and that was it. 

    It felt like we were going backwards

    Backwards, to anyone, is not a way you really want to go. Not when we’d gone from 15/20ml to 70ml a feed. It was the complete opposite direction to what we were aiming for and when you’ve been on such a high of steady progress it brings you back down with a complete crash. 

    We had to start over.

    Back to 20ml again

    So off we went on our merry little journey again. Now if you follow my Instagram you will see how I post things and how quickly all of a sudden Oliver seems to have realised that he’s actually a baby that can function. He’s started lifting his head more, the arms and legs are all over the shop and I’ve never come across a baby that can be so easy going and smiley, yet so serious in the same breath. 

    Anyone that’s had the chance to spend time with him in the past month and a half knows the side eye that he gives as if to say ‘who even are you?’ But can also tell you that two minutes later he’s smiling and flirting away and eventually hiccuping from laughing. A laugh that can make even the bleakest and difficultest moments melt away into the background

    So now for the news that people are looking for….

    Oliver’s feeds have now been capped, he’s not to have his feeds uppped, so we’re set at 180mls five times a day. (To do with weight but that’s for another post) To those of you that don’t work in MLS that’s 6oz. So we’ve finally had time to catch up without goal posts constantly moving. We are now taking a steady 120mls for at least three feeds a day (morning and late feeds are hit and miss) so that’s just over 4oz a feed.

    That’s 2/3 of his feed

    I feel as though feeding has just clicked. I don’t feed with two bottles anymore, that’s mixing the feed in a big bottle and transferring it to a small bottle so he isn’t overwhelmed and then top up as we go along, now all one big bottle for a feed. We still have to watch his breathing as he can quite quickly become overwhelmed and get all out of sync but we are getting there! Feeds still take an incredibly long time compared to other babies his age but the fact that we are starting to become less dependent on the tube is a win in our eyes. 

    For the rubbish few weeks we’ve had for cancelled appointments (endocrine apppintment being cancelled, weaning appointment with Salt cancelled) being spoken to about doing things with tube incorrectly (through no fault of our own just incorrect advice) we’ve had this absolute little gem keeping us going and it just keeps getting better and better. Hopefully by the summer we will be tube free….but I can’t get to excited or push too hard as we don’t want to back track like earlier in the year. 

    So for those of you that see me and see that at times I feel like everything’s slowing down and we aren’t getting where we want to be with other teams….give me a gentle reminder that we’re making progress in other areas and progress  in one area is better than none.

    ….Oliver hasn’t quite grasped the idea of a jumperoo….not even the leg part we understand that. He won’t even touch the toys 😂 one step at a time and all that