We are now into the sixth week since Robbie’s implant and again a further busy week has been had, it kicked off with the local press taking pictures of Robbie and some of his classmates in order to announce the fundraising the school had done for the Dystonia society to the local community. This should appear in the local press later this week.
Other than this we have had a mountain of school activities to attend for both Robbie and his little sister Chloe, who have now had their nativity plays, school Christmas dinners etc, so there have been several distractions to keep us all amused and to add to the already high spirits that the lead up to Christmas always brings. Just this week’s school parties to go then the holidays are here... so all good on that front.
Anyway back to the matter in hand, as per last week’s blog where I explained Robbie had been back to get his DBS settings changed, we have been astounded by the changes that have occurred by this settings increase, all in a very, very positive way... Robbie has progressed immensely since this change and is now walking in a way which he hasn’t managed for many, many months, no longer is he walking two steps and falling over, hanging on to whatever he can reach instead he is walking much steadier, and seems to be able to balance much easier... to watch him doing this and improving these skills again is heart warming to say the least, and a deeply emotional experience for us all to see this wee man improving each and every day... the strange thing is we never saw any change for the first couple of days, and then he seemed to show an improvement one morning with his left leg becoming less stiff, and he has steadily progressed from there... part of me wonders if this was his confidence growing once the leg seemed to loosen off, then again it could have simply been it taking a bit of time for him to learn to use his leg again.... either way it is truly miraculous to see and witness.
In a similar fashion since the change his hand control seems to have improved further yet again, and he is managing to hold a pencil etc in a very much, less awkward manner, this has allowed him to have much more control over handwriting, drawing, colouring in etc and as such he seems very much less frustrated, and able to get on and do his schoolwork. (We are getting some really good feedback from the school and it seems Robbie is doing really well with his work at this time)
Overall this is by far our best week yet since the op, it really is turning into a really positive experience, and I will repeat to any reading this that may have the opportunity of the op and be in two minds, to go ahead and get it done 100%...
They have basically given this brave little soldier new mobility which he was definitely loosing had the complex motors team not arranged for the procedure to happen, side effects are minimal, his hair has now grown back in and seeing the scars is difficult, pain has pretty much been non existent (that said I still think it is taking him a while to come to terms with the battery pack in his chest – I think it is because he is so conscious of it being there still)
The only other downside is Robbie is patiently waiting for an opportunity to lie down in the bath, he cannot immerse the scars in water for the first two months post op, he can and does have a shallow bath, but can only get wet from the belly down, he was in the bath the other night and announced he is "dying to lie down in the bath" all will come in good time, unfortunately mid January in Robbie's case, this made me chuckle.
Most of all it is good to see Robbie getting better, and believe me it really is good to hear and see him fighting and arguing with his siblings (surely a sign he is feeling much better), he is happier within himself, he will readily go and join in any games where for a long time he just wanted to watch, on reflection this may well have been due to his lack of mobility stopping him from joining in, not now though he is right in the thick of it all, don’t get me wrong we sit watching him with great fear in case he bangs his head or chest but to be honest we realise we cannot wrap him up in cotton wool anymore and he needs the freedom to play and learn again, and he certainly is doing much better.
Uncle Robbie also got to feed his little new niece (Josie) this week, and managed with no issues whatsoever, this was something he would have really struggled with post DBS.
Unfortunately Robbie has picked up a sickness bug over the end of the week, which has slowed him down Fri/Sat but he seems to be past the worst of this by now (Bit like his Dad when he is unwell he feels really sorry for himself – could be a guy thing)
So there ends this week’s update, it really has been an amazing week and we feel this week has been the biggest step forward to Robbie’s progress by far, again all is good in the Ovenstone household. DBS we owe you the world.
Can I also just give a quick special mention to Alison Birkin who has been a true inspiration and rock for me to lean on over the last year or so through the bad times and the good, it is good to share with someone who has been there – thanks Alison, indeed I thank each and every one of you all for the support, kind words and encouragement you have all given during this time.
I also cannot forget to mention my wonderful family who are truly my reason for being, I simply couldn’t ask for a better Wife, children, brothers, sister and parents without whom this time would have been so much harder to face... Money and possessions are nice, but give me my little happy family over these things any day, as long as we can eat, keep warm and have a laugh, cry, play and be happy together then I now realise (years down the line) this is the true route to happiness.
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