Our last update brought Max's story up to his fifth birthday. For his birthday, at the suggestion of a friend, we got Max a 'Kinect' for our Xbox video game console. If you are not already aware, the Kinect is basically a motion sensing device that sits in front of the television and allows you to control games with your body movements. So, instead of sitting on your backside with a video controller in your hand, you must stand up and physically act out the required actions. For example, when playing bowling, to get your avatar to do the corresponding movements, you must physically perform the action of bowling a ball. Previously Max had not shown too much interest in video games, but he loved playing games via the Kinect. In particular, he liked thrashing his dad at Boxing! It was very satisfying for us to see him so enthusiastically take to it, particularly when he had spent so much of the previous year stuck in a hospital bed.
Skin wise, Max still had wound issues. As a result of the persistent wounds that just would not heal on his right palm and wrist, Max was not using the fingers and thumb on this hand. Max was keeping his hand consistently in a fist in order to protect these wounds from harm. Wise? - perhaps. However, his skin on the underside of his fingers had tightened to the point where could no longer straighten his fingers. According to the doctors, there was a very high risk that if not resolved, this disfigurement could become permanent.
This splinting however did not last long, as the wounds on Max's hand were being aggravated by the splint. The decision was made to only reintroduce the splinting process once the wounds had fully healed. As it turns out, this was to take more than a year!!
In August 2012, during an appointment with Dr KT, the question was asked of Max whether, due to his permanent hair loss, he wanted a wig. The GVHD had left Max with a bald noggin but this seemed to be one of the least of his worries. From time to time Max will forlornly ask us why he has no hair on his head, but when we explain why, he tends to get over it very quickly. He also happens to have a beautifully shaped head, so it was easy decision for both us and Max to say 'no' to the wig - for the time being.
September brought on a case a deja vu with a trip to emergency as a result of Max experiencing a fever and headaches. As it turned out, Max tested positive for, not one, but two cases of the flu (para-influenza and influenza B)! Max was admitted to hospital but was fortunately sent home a few days later.
As a precaution, he was put on a five day course of tamiflu (cue nausea, vomiting and diarrhoea!) and another course of antibiotics to try and knock out any infection that may have got in through the wounds on his hands. Probably the biggest difference with this trip was that there was no central line into his body to complicate matters. Oh, how much simpler things were without having to worry about that dreaded line! Around this time, Max made one of his regular (2 monthly) appointments to the ENT doctors to have his ears cleaned of excessive wax. It's worth mentioning, as Max seems to have quite an unusual fondness for having this procedure performed.
It was also around this time that the hospital were able to schedule regular Physiotherapy and OT appointments in the home. It was a lot of fun for Max but also very practical as the the therapists made an effort to integrate his 'belongings' into the sessions. This made it so much easier for us to continue on with the recommended exercises at home.
In October we were on high alert as Max had a number of vomiting episodes triggered by an ability to clear phlegm from his throat. We never knew whether something more sinister was at play or whether it was just the unfamiliar remnants of the flu stuck in his throat that were sending him into a panic. Either way, the episode only lasted a month or so. Blood tests did show that his eosinophil count (a GVHD marker) was up, so as a consequence, his steroids, after nearly being dropped all together, were once again raised (from 0.2 ml to 1ml).
In November, it was Bee's turn to be laid low with illness, after coming down with a severe case of the flu (possible pneumonia) which left her bedridden for ten days! Fortunately, we had a lot of help at hand and as Bee 'lived' upstairs for the duration of her illness, Max thankfully avoided the bug. On the upside, during this time we managed to get good use of our renovation - which has not been utilised for 'living' as yet....
December, as it does, brought on the festive season. Although compared to the year before, we were all in a much more festive mood. In early December we attended the 'Challenge' Christmas Party, at which Max had an amazing time. Do those people at Challenge do a brilliant job or what!? Imagine a carnival with all the rides and food choices that you would expect of a carnival, but with a quarter of the crowds and without a cent to pay? Oh, and they also have fast cars there so Max and Tim got to take a ride in a Lotus. What a day!
Max had his last day of kinder on the 19th. It was another reminder of how far Max had come in the past 6 months. At the start of the year, Max struggled to stay awake until the end of class but now he was able to make it through with ease. His progress made us all the more confident that he would be able to make it at school.
Christmas Day arrived and Santa Clause was kind enough to drop a trampoline in our backyard for Max (the word from Santa was that those things are never as easy to put together as they make out in the video, particularly when you are doing it in the dark and have had a couple)! Santa had obviously had a word to a physiotherapist as trampolining is an excellent way of exercising for Max (given it's size - and weight restrictions, Santa must of also snuck a peak at Tim standing on the scales, as it was safe for both Max and Tim to bounce together). Max was a little cautious at first, but over the year he has grown much more confident in his bouncing abilities.
2012, following on from a fraught last third of 2011, was a very challenging year for Max. What gave us great hope was the way he bounced back from being in a very precarious position. Max der Starke indeed! We were all optimistic that 2013 would be a great one for Max and it would be fair to say that all our hopes have come to be realised.
Although we had always known, given his age, that 2013 would be the year that he would start school, it wasn't even until September 2012, given what had passed over the previous 2 and a half years, that we even began to contemplate actually sending him off to one (Bee had always anticipated that she would have to home school him). Thanks to some help (was it from upstairs?) we were fortunate enough to get Max into an amazing local Catholic Primary school. Ever since our first contact with the school, they have shown great compassion and empathy towards Max and not surprisingly, the whole school community has embraced him.
Actually, I'm probably running ahead of the story a bit here. We shall pick this up again next time. Stay tuned for the next episode of 'Max der Starke' where we find out all about:
* Max's school days
* Max the billiard / pool shark
* Max the artist
* Max's adventures with Hi-5
* Max's magical 6th birthday party
* Max is getting a sibling!