Waking Georgi

encephalitis and beyond...

Paul

Paul

  • Age: 51
  • Sex: Male
  • Country: Georgia
  • Member since: Nov 2007
  • Forum posts: 128
  • Login status: Offline

About me

I'm Paul and this is Georgi, my fiancee's child. Georgi has an acquired brain injury caused by herpes simplex encephalitis, which struck him down a couple of months before his 7th birthday, in July 2007. I originally started this blog to record Georgi's progress but, more recently, Georgi himself has been able to use a computer well enough to post a few things of his own. When Georgi first fell ill he was staying at his grand-parents' "dacha" (country cottage) in a village not too far from Tbilisi. He'd stopped talking and was acting very strangely. At the time I was at home in Tbilisi, where I worked. Fortunately our local ex-pat doctor ran a 24-hour clinic, so I was able to get hold of a doctor to call Lana so she could explain all the symptoms to someone in her native Russian. The decision was quickly made to bring Georgi back, and he and Lana spent the night in the clinic. I first saw him when he arrived at the clinic and he was having difficulty walking, and he had a strange half-smile for me when he saw me, but there was clearly something going wrong with him - not that we had any idea how serious it would turn out to be. Our apartment was just down the road from the clinic, so I went home, hoping that he would be better then next day. He wasn't, in fact he'd been transferred to the intensive care unit of the local children's hospital. The next day he went into a deep coma, which lasted a couple of weeks during which time we didn't know if he'd pull through, but he did, and he was eventually able to be discharged in early September 2007. And so began our new lives. From early despair, followed by a few weeks of watching over this "bed-ridden crying thing" with eyes which rarely opened, by November he wanted to stand up all the time and play with his giant physio ball. All this time Lana and Georgi were staying across town with her parents, while I did my daily "triangle" of going to work, going there, then going home. We managed to rent a new apartment within walking distance of her parents house, so I moved in there in April 2008 and got things ready for the "big day", when Lana and Georgi moved in, about a month or so later. My work contract had finished at the end of April, so I took a step back to focus on looking after my family. Things were going great; Georgi was receiving regular physio and speech therapy, and he was progressing. He still couldn't really talk but he was, eventually, able to support his own weight when standing - though he still couldn't stand on his own. It was a bit like trying to stand a pencil on its point. He was well enough to pay his first return to the dacha almost a year to the day, from when he took ill there. Unfortunately this visit also necessitated an emergency extradition but, on this occasion, they were accompanied by full military support in their rush back to Tbilisi - helicopters, tanks, armoured personel carriers, the lot! They got caught up in the full retreat of the Georgian army, who had just decided that trying to fight off the Russians, who were advancing on their positions (a few miles to the north), just wasn't working. The war didn't last long but it was a very worrying time, particularly for Lana and her family, who'd lived through the civil war. Georgi seemed to deal with it very well - so long as he had lots of his own "captives" to play with him, he was happy. Since then things have, at times, been very stressful. Sometimes Georgi seems to regress a little, and not have the energy to talk much, or be able to stand. But, then again, he IS getting bigger every day so we feel like we're (losing) in a race against time to get him to stand on his own two feet, before he gets so big that he'll need two people to lift him. He likes standing and trying to walk, but we don't have any suitable equipment here to help him to develop his enthusiasm into something more. Things have been very tough on Lana, especially, as she is the one who is with him the most but she does her best and knows that, however difficult it may seem to her, Georgi is the one who is really trapped by this thing; sitting in the house every day, listing to other childhoods, outside, out of sight, while all he can do is watch the trees go through their yearly cycle. We take him out as often as possible but, particularly in the winter, it's difficult so it usually means just a drive around in a friend's car. We did arrange a fantastic birthday party for him at a children's play centre, which he really enjoyed, and we hope to get him out a lot more when the summer comes. The joy on his face when he hears that he's going out is something to behold, but the sadness in his eyes when the weather's too bad to go, or when someone forgets something he was expecting, is terrible to see. He can make a few sounds and the odd word, but most of the time he communicates with hand gestures (and squeels & squawks), which he developed, and which we've come to understand. As of the time of writing this summary (early 2009) I'm still out of full-time work - partly due to the necessity of looking after Lana & Georgi, but the global economic downturn has made things increasingly worrying. I do have a part/flexi-time job of sorts, but that's commission-based work and the global slump has affected the business so badly that, essentially, I've been living off my savings for several months now. There's not a lot left in the piggy bank so we've had to cut back on a few things, including Georgi's speech therapist. I think I'm "acting speech therapist" for now! Right now I'm taking whatever small jobs I can find and, if I find something to pay the bills for another month, I'm happy. I suppose I should be more concerned about money, but I feel like we've got through such a difficult time, that things will work themselves out, somehow. Actually, getting a job somewhere else is difficult for two main reasons, apart from the fact that I wouldn't be here. Firstly, there aren't that many jobs around but, secondly, I've found that people like me are a bad risk to companies outside of Georgia. I don't actually blame them because they need to assess the risk involved in employing a particular person and, in my case, the risk they perceive is that I'll hot-foot it back to Georgia as soon as a decent job here comes along. I can't say I wouldn't, but there's ways of mitigating such a risk, so we'll see. All I know is that Georgi will need assisted living, probably for the rest of his life, so my only aim is to see that he gets that. I know of one way I might be able to do that, but it's something I need to work on and hope that some kind souls will help me to achieve it. I also know that Georgi is a very special child who copes with his situation a lot better than I think I would, if I were him. It does still make me very sad when I look at him, sitting there, waiting for someone to come and sit next to him, and I think it always will. But the thought that one day I'll sit next to him for the last time, and never be able to look after him again, one way or the other... well, I have to say, it truly haunts me and makes me profoundly sad. Go to Georgi's blog...