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!

    Getting from tube to no tube

    Oliver is tube fed. This is due to the lack of understanding on his part of the suck, breathe swallow reflex. This is something we all take for granted as we do it without thinking. Next time you’re having a drink out of a bottle think about it while you’re chugging down your Coke or Fanta. Now imagine trying to relearn it, not an easy task.

    We feed Oliver 6 times a day with the tube at the moment and we’ve had a battle to get to the point of being able to bottle feed anything. We’ve gone from struggling to do 5ml to taking 15-20ml a session now. This mainly being down to Mike not me. For someone who generally isn’t very patient he’s worked wonders with Ollie and has got the bottle feed down to a fine art now! We’re just waiting for speech and language team (salt) to see his huge improvement in a matter of days and check we’re ok to carry on the way we are and continue to let him dictate what he can and can’t do

    For pws parents who are struggling to get their little one to feed here’s what we’ve been doing

    First we’ve had the ok to bottle feed by the salt team.

    Second we get comfy on the couch with our legs bent up  We lay Oliver on our bent knees so that he’s stable (holding in your arms can make him need to find his balance, so distract from what he should be focusing on)

    Put a timer on for ten minutes and start feeding.

    Some feeds we get five minutes in and we can see he’s had enough and stop, other feeds at the end of ten minutes he wants to keep going but we don’t want to push him and wipe him out. It’s more important to us that he tries to feed each feed than get one solid bottle done a day.

    We are making progress and he never seems to fail to surprise us with what he does. Yesterday he brought wind up no problem! There were cheers in our household and smiles all round and I’ve come to realise this is what being a parents all about. Not showing your baby off but learning to celebrate all the small things that they achieve. 15-20 ml is nothing for most new born babies and for us and our seven week old it shows a huge leap in progression that when leaving the hospital we thought would take months because of google

    Oliver 0.5 – 0.5 PWS

    We’re coming to claim that point five PWS don’t think you can keep it!
    Note: I will continue to update this post as and when we make more progress. Hopefully it won’t be long before a full bottle every feed and we can get rid of the tube