A very bad day for us today, particularly for Mike. As some of you know we were off to the Austin today for Mike to have a few tests. Unfortunately these did not go to plan … well the tests did, just not the results. We still don’t have the full details but basically some really bad news about the functioning of Mike’s kidney and bladder. Very upsetting given the hard nursing work that has been done in this regard over the last week. The results feel like a massive leap backwards but we will wait to talk to the specialist next week to really understand the medium to long term ramifications of this. I was so sure that I spoke to the guys on the roller-coaster and said that we were over it and to turn the damn thing off! I have never seen Mike so stressed and this of course led to uncontrollable (and extremely painful) spasms all day.

Worst of all he was so upset that he couldn’t do a FES bike session in the free time in the afternoon.
(and for those that have asked since the video went up – Mike is not doing that himself. His hands are strapped on to the bars and then the machine is turned on, it moves his arms either passively (ie, with the motor) or via electrial stimulation to key muscle groups).

On more positive notes:
- physio session (as usual) was awesome. Leanne was a wonder and a marvel and got Mike to roll over. I’m sorry I missed it but will ask for a repeat performance asap and will try to nab it on video (yes Sparky, the right way up!) While Michelle was in last night with Baby J she (ie, baby J) rolled over – MIke was asking her to do it again to show him how — well done Jazzy – you are a good teacher (even if you are only 4 months old!)
- was great to catch up with the guys in Hawaii doing prep for the Hawaii ironman (Skype is a wonderful thing) — good luck Sammy and Brett, happy cheering Naant and hope you are on the mend quickly Mitch. We will be cheering for you from Talbot (or hopefully home!). Bridie – sorry we missed your call;
- had a really good meeting today with the patient advocate for Austin Health in an attempt to improve Mike’s program or at least be allowed to bring in external people;
- we had the best ever ambulance transfer guys over to the Austin – thankyou Reg and Denise you were amazing!
- the lovely and amazing Harri came out to Talbot tonight to do Mike’s nightly stretching, massage and range of motion work to give my back a rest, me an early-ish night and some time with Ash. Thanks Harri – was great to read to Ash until she feel asleep tonight, precious time.

All-in-all an OK day, and let’s face it, we were due a setback— just wish it weren’t so major or permanent!

We have another appointment tomorrow – we are regular jet-setters (or ambulance-setters) these days – with the maxio-facial guys to suss out why his jaw doesn’t align, why he can’t bite properly and why some of his teeth are about to fall out. Hopefully an interesting outing with some easy and non-surgical solutions.

Will try to get Mike home for the weekend. I think after the setback of the week will be good to re-group at home (and fairy ballet!) for a bit of normalacy. Thanks for the messages of support – will try to keep the video (right way up) coming – maybe some of Mike playing ball with Ash and Mike doing his “tricks” in physio.

Finally a huge thanks to Sparky for the fairy-wheels clip – Ash honestly thinks she is a movie star. I think i have watched it about 20 times – she is mesmerised!