Hi there everyone,
It’s been some time since our last progress report, but it’s all been great news generally. We’ll start with an e-mail from Rachel on 16 September at 9.38 pm:
Good evening all,
It has been nearly a month since we sent an update through to you all as a group communication and a lot has happened, as most of you know. I thought I would commence regular updates again now that it would appear Matthew has finally moved from being a ‘medical patient’ to being a rehab patient in the true sense.
After our last photo and update sent in mid-August, Matthew had a number of setbacks which he and the family found terribly frustrating and worrying, however in true style Matthew has recovered from those issues (detached retina, bone growth, superbugs, just to name a few) and while he had a sad day or two, decided to ‘snap out of it and focus on getting better’….his words, of course.
Matthew’s days are spent working with the physios in the gym, focusing on core strength and stability at the moment. His stumps are fully healed although the sensation of arms and legs remains with him and he does get phantom pains, which the family help with by rubbing his legs/arms when we can. It seems to reset his brain to remind it that it doesn’t need to focus on those peripherals anymore! Matthew is working closely with OT’s who, along with all family members, are looking for technological solutions and equipment to help him progress from ‘now’ to ‘then’, whatever ‘then’ maybe….we all recognise that this process will be step by step, discovery by discovery as Matthew defines his space and how he wants to operate it in it. For example, his first electric wheelchair worked a treat as chin controlled. Well, two weeks later and a plumbers plunger inverted on to a joystick makes for an even better controller using his arm! An ipad, a long stylus and duct tape helped him search the net and now we have found software that he can use by controlling and moving his face. An evolutionary process which has us all quite engaged!
The key focus for now is Matthew’s independence – and he is pretty determined. Over the last week, Matthew has conquered 30m’s moving across the floor on his own, is now climbing stairs, can manoeuvre between chairs and beds on his own. Pretty amazing to watch. When I visited on Friday, Matthew’s rehab doctor was trying to Skype Sydney to some medics who have been involved with paralympians to see if we can find solutions for his limbs and prosthesis. These will be further down the track and we will leave no stone unturned to find the best for him, or rather he won’t let us!
The kids spent last Thursday in the gym with Matthew and the physio doing a Paralympics session. Bottom shuffle races, push daddy over challenges etc. A very special time for all. Matthew, in his true competitive spirit, said to me that there was cheating involved by the kids as they used their legs and arms. He was smiling from ear to ear.
The kids have started to have sleepovers up in the rehab room. There is a foldout bed, and it is pretty delightful for Matthew to have them cuddle into his arms at night while they watch a movie together. The kids also seem to love the ‘room service’ and the satellite TV! The kids are now fighting over who gets to sleepover with Daddy. Matthew and Diane are have rare moments to have date nights, however we still need to encourage this a bit more. The rehab nurses have been funny and last week when I popped back up to the room to grab something, caught them plotting and planning for arranging Matthew to go to the florist to buy flowers!
Matthew has been doing some little excursions in his wheelchair:
– Luke had his confirmation last Sunday and Matthew was able to attend;
– A very big moment for him was last Friday when he and Diane went back to the ICU to visit the staff that saved his life. Matthew had told them he would come back to visit, and come back he did.
– Matthew went home today and the family had a chance to simply spend a Sunday at home together. Matthew has been looking forward to just sitting on the couch and thanks to the first of some modifications to downstairs, his wheelchair can get inside and he was able to do just that. Apparently it was a lovely day for all.
A few moments from my memory bank over the past few weeks:
– Matthew called me using his new ‘blueant’ set up from his mobile. When I answered, he replied ‘ thank god, this has taken me 20 minutes to get this bloody Siri to work’. After a few minutes the phone was disconnected so I rang him back. I asked what happened and he said the phone had been on his belly, it had fallen onto his stump and he had accidentally pressed off. I asked if he found it all too frustrating at times. His response was ‘ no, not frustrating. Just incredibly fascinating ….in a macabre sort of way….it really is very interesting’.
– In one catch up, Matthew said to me…’I think I am a bit scary to some people’. This was after the family had been to Southbank again for a visit to the park. Apparently some kids came over and asked what happened. Matthew replied ‘sharks’. The kids ran away.
Matthew has such a positive and formidable view on this ‘next chapter’ in his life, and his humour is amazing. In his words, he does not want to be defined by his disability. His job is to get as strong and as independent as possible so that he can spend the rest of his life with the kids and Diane.
It has been great to welcome more friends into the fold and those who have visited Matthew have brought a fabulous energy, perspective and different focus for Matthew as well and it has been truly welcome. We appreciate your patience with us as we have grappled with timing and we know we got it pretty right. Monday’s and Thursday’s from 4.30pm open to general visitors, although txt Di / me just in case there are lots visiting and we can let you know! The kids tend to visit all other days so it is pretty chaotic then! Matthew can also be contacted by mobile phone , if you don’t have his number txt me and I will send it through.
In all of this, Diane continues to keep her head above water and remain strong, upbeat and positive. The kids are so well balanced and I simply do not know how she has done it but certainly the support she has received from those closest to her has been amazing. Thank you.
Hope you all have a good week.
So that was on the 16th. Since then, Matthew has been taking himself slowly of some drugs he was on that he felt were making him a big sluggish. One of these was a drug to suppress nerve activity in phantom arms and legs. I saw him on Monday evening on a quick day trip to Brisbane from Rockvegas, where I started to interview him for a documentary we may make in the longer term. It was already evident that he was feeling ‘clearer in the head’. Late on Friday afternoon (21 September) I received a skype call from Matt. He had organised it himself, courtesy of the long stylus Rachel ordered from the US, and his iPad, and not that he wasn’t ‘back’ before, but even he says now that he can feel he’s back to himself. He apologised for my looking up his nostrils because he couldn’t move the iPad around once he got it started, but we laughed. Him being back to himself also comes with not sleeping very well because he’s so busy thinking about all the things he needs to do, but that’s a good problem to have.
Eventually, we’ll hand this blog over to him, or we’ll transfer you all to his own blog as you follow his progress to the top of the mountain, but in the meantime, I’ve got a few more posts coming that perhaps will give an indication of where this journey might go.
Here are some photos…