Here we are then two weeks ago today we were very stressed, however two weeks since the operation now and things are much easier.
Robbie is recovering well and the scars still are looking clean and healing well. Robbie hasn’t complained of them being sore much at all, although you can see him scowl and grimace sometimes when you take his right hand (his battery pack is obviously still a bit tender)
Our main focus has been to make sure Robbie is getting into the habit of charging himself every day as we are keen to ensure this just becomes a routine for him moving forward, and also making sure he takes a little exercise and fresh air daily to try and keep him on the move.
We are contemplating putting Robbie back to school next week, in order to get back into a normal routine, he got a lovely surprise from his classmates through the post the other day, when a big A4 envelope came through the post, and it contained about 30 handmade get well soon drawings from each of the pupils, some of the messages in the cards were absolutely fantastic to read out to him, and again as I read the cards out to him, all I could feel was that oh so familiar lump building in my throat, we were all really touched by this kind gesture from the school, it truly is unbelievable how many people are wishing the best for Robbie. We also picked up some work for Robbie to do at home whilst he is off in an effort to help him keep in touch with studies.
As for Robbie in general, it is still very early days but we haven’t seen many further changes as yet, but it is as I say still very early days, on the positive side the foot which he wears his splint on still seems to be much better postured than before his surgery, however on the downside he is still having a problem with his other leg staying very stiff and he seems to be really struggling to bend this, this is giving him major difficulties when walking and even more so if he falls as he really struggles to get up again... but as I say very early days as yet so we are not too disheartened. I think he is still a bit tender where his battery pack is placed in his chest, so again this will probably still be having an impact on his ability.
As for myself I have again felt a bit of a real mix of emotions over the last few days, probably down to my own impatience, and sometimes I feel there is a change, and other times I question myself if I am kidding myself on (self doubt is a problem), I am pretty sure there have been small changes, although being with Robbie 24/7 I know I am probably expecting far too much far too soon, and may well be the last one to click on as the changes are slight.
I have included a scan of Robbie’s x-rays post op clearly showing both the implants and power unit, I still find these remarkable to look at a week after I got them, and thought they may be of interest. After the op all parents are given an A4 laminate referred to as a DBS passport, it is basically an official notification from Guys and St thomas NHS foundation trust advising has a rechargeable activa RC deep brain stimulation implant, date of surgery, and then goes on to state the lead targets in the area of brain where they are positioned. The passport also gives some advice i.e. avoid contact or close proximity to magnets, no MRI svans to be done, and surgical advice guidelines for in the event of an emergency, the back of the passport contains the contact details for the CMD team for emergency contact.
To be honest I have copied a few of these, one sits in the glovebox of the car at all times, one in his charger bag, and one is ready to be given to the school upon his return.
Overall he is still doing really well, and is still happy as ever
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