I don’t like to be too well prepared for Christmas. To me there is something magical and seasonal about having to get a few bits in the last minute rush. I will never be the sort of person who has the tree up and the presents bought and wrapped by December 1st. This year, however, a nasty cough and cold left me drained of energy and festive spirit at the time when my preparations should have been well under way, meaning it was all a bit last minute for me. Everything was done, and I got to sit and relax on Christmas Eve, but the previous week’s rush and the fact I was up until 3 am wrapping on December 23rd has left me in recovery mode this last week. Hence I am having a VERY quiet New Year’s Eve tonight. Andy has gone out for a couple of games of snooker with my nephew Mark, and then we shall enjoy Jools Holland’s Hootenanny!
Meanwhile, here I am with my laptop and a nice cold glass of Chablis, and a music channel playing cheesy party hits, and time to get the chocolates out soon…..bliss.
Christmas came together pretty damn well. Andy was the master of decorations, and came up trumps with a 7ft tree (which he christened the ‘behemoth’) for half price. The girls had a suitably splendid array of presents, but without ludicrous amounts of money being spent. And Christmas morning doesn’t get a whole lot more magical than spending it with a three year old.
Hoped to put a picture of the tree here, but couldn't get it to work for some reason.
The time has come to reflect on 2005, which on the whole has been a good year. This time last year I was surrounded by boxes and chaos, having been in the house just two weeks, and I was just beginning to get my head around biliary atresia. I’m glad not to be in that place now. This year has a much more stable starting point, and I feel so much stronger than I did then.
When I look back on this year, the lows I can remember seem generally fairly small in the grand scheme of things, and mostly related to my depression, and times when I felt overwhelmed by life. On the other hand, there have been so many major highs. The amazing good health that Hannah has enjoyed, Caitlin venturing out into the world at pre-school and nursery, a brilliant holiday, a special 30th birthday treat, and that is to name just a few. I thank God for all the blessings He has given us, and for the strength I have found in Him.
Ever the optimist and lover of the clean slate/new exercise book, of course I have made resolutions for the New Year. Trying hard not to do my usual trick of setting myself impossible targets, I am trying to keep things specific and achievable. So here goes:
Resolution for 2006
Raise money and awareness for CLDF. I am tentatively hoping we might raise £1000, but knowing nothing about fundraising I am not sure if this is achievable. My first step is to contact the fundraising officer for advice.
Resolutions for January
Gain some financial control!
Sell my car
Perhaps having them on here will help me keep them.
The wine is reaching my brain now (will I stay awake until midnight?) and I had better get this posted whilst still in reasonable sobriety – still have to faff with the Tree Photo.
Happy New Year! (and a belated Happy Christmas, always a bit slow…)
My Girls
Saturday, December 31, 2005
Wednesday, December 14, 2005
Thursday, December 01, 2005
Poo (warning!)
Hannah had four days of pale, beige coloured poos, beginning last Thursday. (Pale poo can mean bile flow obstruction.) The first couple of days, I didn’t worry overmuch, but did begin making sure her food was not responsible (lots of oranges, carrots, tomatoes, lol). By day three, I was starting to stress a little. By day four, it was a struggle to not keep dwelling on it, and to stop myself conjuring up worst case scenarios. I fought particularly hard to keep the phrase Secondary Failure of Kasai from popping into my brain at random moments.
Monday morning, and I phoned Birmingham. There was no-one on Liver Direct, so I left a voicemail message. This turned out to be somewhat fortuitous, as at 1:30 pm Hannah produced a nicely brown coloured poo. When they phoned back at 2 pm, it turned out that the brown poo saved her from a blood test. The last two days have also seen lovely brown poos. If they get pale again, she will need bloods, so over the next couple of weeks I will be a bit anxious at nappy change time. Such is life with biliary atresia; this disease loves to keep you on the edge of your seat, never quite daring to completely sit back and relax.
I am left wondering why. Is this liver related, or just how poo varies? Unsurprisingly, I never took much interest before. Never had a burning desire to be a poo expert, or do much with it apart from flush it away. I am a fully self confessed knowledge junkie, and find it difficult to accept there are things I can’t find out the answer to. I won’t know, unless it happens again, which obviously I would rather avoid, so I suppose it is a waste of time worrying. It’s the same thing with her liver being enlarged, then not enlarged, then enlarged again. Why? But there won’t be any answers unless it turns out to be a problem, which it might not, yet.
In a few years, if this blog still exists, Hannah will not be impressed with me discussing the minutiae of her bowel movements with anyone who cares to read it. Sorry, Hannah.
Excitingly, I am fully booked with students, and loving every minute of the lessons, although it is an effort of willpower to drag myself out of the house in the evenings after the girls are tucked up in bed! It is amazing how much improvement can be made with individual encouragement, as long as there is an intrinsic work ethic present. I am beginning to wonder if there is a way I can teach one-to-one or small groups forever!
Today was wet and windy; the sort of weather that makes me feel glad to be alive, although somewhat defenceless. I braved the walk to nursery both ways, meaning, I think, that soon it will be time to say goodbye to my car.
Monday morning, and I phoned Birmingham. There was no-one on Liver Direct, so I left a voicemail message. This turned out to be somewhat fortuitous, as at 1:30 pm Hannah produced a nicely brown coloured poo. When they phoned back at 2 pm, it turned out that the brown poo saved her from a blood test. The last two days have also seen lovely brown poos. If they get pale again, she will need bloods, so over the next couple of weeks I will be a bit anxious at nappy change time. Such is life with biliary atresia; this disease loves to keep you on the edge of your seat, never quite daring to completely sit back and relax.
I am left wondering why. Is this liver related, or just how poo varies? Unsurprisingly, I never took much interest before. Never had a burning desire to be a poo expert, or do much with it apart from flush it away. I am a fully self confessed knowledge junkie, and find it difficult to accept there are things I can’t find out the answer to. I won’t know, unless it happens again, which obviously I would rather avoid, so I suppose it is a waste of time worrying. It’s the same thing with her liver being enlarged, then not enlarged, then enlarged again. Why? But there won’t be any answers unless it turns out to be a problem, which it might not, yet.
In a few years, if this blog still exists, Hannah will not be impressed with me discussing the minutiae of her bowel movements with anyone who cares to read it. Sorry, Hannah.
Excitingly, I am fully booked with students, and loving every minute of the lessons, although it is an effort of willpower to drag myself out of the house in the evenings after the girls are tucked up in bed! It is amazing how much improvement can be made with individual encouragement, as long as there is an intrinsic work ethic present. I am beginning to wonder if there is a way I can teach one-to-one or small groups forever!
Today was wet and windy; the sort of weather that makes me feel glad to be alive, although somewhat defenceless. I braved the walk to nursery both ways, meaning, I think, that soon it will be time to say goodbye to my car.
Saturday, November 19, 2005
Burgled - and an update on Hannah's clinic visit
So here, albeit a little late, is the promised update. I didn’t intend it to be quite this belated, and on Tuesday night after a Maths Lesson sat myself down to catch up on some emails. Managed one post to BA network, and had just begun a long overdue email to Danielle (sorry Danielle, have got no further with it :-() when I heard the front door shut. Andy was not in the room, and I assumed he had gone out to put something in the bin. In fact, he was upstairs, and some ******* ****** (insert expletives of choice) had brazenly walked into our house, when we were here, at 9:30 pm, and swiped my handbag and Andy’s mobile from the kitchen.
The next four hours saw frantic cancelling of credit cards, deactivation of phones, Andy stomping round the neighbourhood, and a visit from the police (the woman who took the call seemed quite excited when she realised it was a BURGLARY!). They had tried to use one of the cards within 10 minutes of stealing it; unsuccessfully because they didn’t know the PIN. Scenes of crime came round the next morning, but didn’t find any prints. Not surprising really as they didn’t have to touch anything apart from what they actually took. It’s possible there may be CCTV from the cash machine where they tried to use the card, but that is the only possible lead.
The bastard even answered my phone, as if it was his!!! :- Obviously this was before I deactivated it. GRRRRRRRR
Why can’t these people do honest work for a living, like the rest of us do? Probably because it was drug related. Now there’s a topic for another post…..
In many ways this unpleasant event is actually a good thing. We have lost our sense of complacency regarding our security both when in and out of the home. Andy has spent £200 today on security devices for our home, and we haven’t finished yet. I have realised that there is not really any need to keep all my credit cards in my purse, when I rarely use them. They should be kept safely at home unless I need them.
This has also been achieved with the minimum of harm done. Really, it has just been a matter of inconvenience. We received most of the replacement cards within 48 hours, and the replacement sim cards to enable us to keep our mobile numbers within 3 days. We are also very relieved that Andy (or indeed me) did not come face to face with him/them, as they may have been high on drugs and/or armed. It was only that he had gone to the bathroom which prevented him from bumping into them……scary….
So I guess, shit happens, and it could be much worse. A lesson has been learnt. The worst inconvenience is losing our numbers stored in our phones – everything else is replaceable. And it is nice to have an excuse to update our phones…… ;-)
I had so much news before that I wanted to post but half of it has gone out of my head, so I will try and get through a few of the major events, in the 10 minutes I have before the Strictly Come Dancing result.
Firstly I wanted to say that I am so happy for Andy that he has been given a project at work that he is enjoying, for the first time in a couple of years. Of course, this means I have become a ‘java widow’ again, but I can live with that for a few weeks ;-)
Next, Hannah has had bloods (31st Oct) and a clinic visit (4th Nov). Bloods excellent, first ever normal across the board. Hurrah!
For those who care, they were
Total Bilirubin 4 (remember we’re in the UK!)
Albumin 41
ALT 39
Alk Phos 355
Total Protein 63
The clinic visit was OK, although her liver was palpable again, about an inch (it shouldn’t be felt below the ribs). It always used to be, but then in the two clinic visits in early summer it wasn’t. There seem to be three possibilities. 1) This is because she is growing 2) This is because the enlargement was missed in the summer 3) This is because her liver is getting bigger. Hope it’s the first. Time will tell.
Aaah, running out of time. Hannah was also part of a Diploma in Child Health exam at our local hospital. This was kind of a ‘Guess the diagnosis’ scenario. Both candidates who examined Hannah correctly gave BA as the most likely diagnosis, which I was fairly impressed with, given that there are only 50 new cases per year in this country. I was relieved that I have done so much research, as the first guy (who knew what a Kasai was – well done) described it as “a palliative procedure to keep the child alive for the first year until a transplant can be done”! That could have sent me into a panic! In some cases, he was right of course – I can well believe that is what he has read about it.
Right, time for SCD. My fix. Who will be out? Don’t want any of them to go. Sob. (Get a life, Sharon!)
The next four hours saw frantic cancelling of credit cards, deactivation of phones, Andy stomping round the neighbourhood, and a visit from the police (the woman who took the call seemed quite excited when she realised it was a BURGLARY!). They had tried to use one of the cards within 10 minutes of stealing it; unsuccessfully because they didn’t know the PIN. Scenes of crime came round the next morning, but didn’t find any prints. Not surprising really as they didn’t have to touch anything apart from what they actually took. It’s possible there may be CCTV from the cash machine where they tried to use the card, but that is the only possible lead.
The bastard even answered my phone, as if it was his!!! :- Obviously this was before I deactivated it. GRRRRRRRR
Why can’t these people do honest work for a living, like the rest of us do? Probably because it was drug related. Now there’s a topic for another post…..
In many ways this unpleasant event is actually a good thing. We have lost our sense of complacency regarding our security both when in and out of the home. Andy has spent £200 today on security devices for our home, and we haven’t finished yet. I have realised that there is not really any need to keep all my credit cards in my purse, when I rarely use them. They should be kept safely at home unless I need them.
This has also been achieved with the minimum of harm done. Really, it has just been a matter of inconvenience. We received most of the replacement cards within 48 hours, and the replacement sim cards to enable us to keep our mobile numbers within 3 days. We are also very relieved that Andy (or indeed me) did not come face to face with him/them, as they may have been high on drugs and/or armed. It was only that he had gone to the bathroom which prevented him from bumping into them……scary….
So I guess, shit happens, and it could be much worse. A lesson has been learnt. The worst inconvenience is losing our numbers stored in our phones – everything else is replaceable. And it is nice to have an excuse to update our phones…… ;-)
I had so much news before that I wanted to post but half of it has gone out of my head, so I will try and get through a few of the major events, in the 10 minutes I have before the Strictly Come Dancing result.
Firstly I wanted to say that I am so happy for Andy that he has been given a project at work that he is enjoying, for the first time in a couple of years. Of course, this means I have become a ‘java widow’ again, but I can live with that for a few weeks ;-)
Next, Hannah has had bloods (31st Oct) and a clinic visit (4th Nov). Bloods excellent, first ever normal across the board. Hurrah!
For those who care, they were
Total Bilirubin 4 (remember we’re in the UK!)
Albumin 41
ALT 39
Alk Phos 355
Total Protein 63
The clinic visit was OK, although her liver was palpable again, about an inch (it shouldn’t be felt below the ribs). It always used to be, but then in the two clinic visits in early summer it wasn’t. There seem to be three possibilities. 1) This is because she is growing 2) This is because the enlargement was missed in the summer 3) This is because her liver is getting bigger. Hope it’s the first. Time will tell.
Aaah, running out of time. Hannah was also part of a Diploma in Child Health exam at our local hospital. This was kind of a ‘Guess the diagnosis’ scenario. Both candidates who examined Hannah correctly gave BA as the most likely diagnosis, which I was fairly impressed with, given that there are only 50 new cases per year in this country. I was relieved that I have done so much research, as the first guy (who knew what a Kasai was – well done) described it as “a palliative procedure to keep the child alive for the first year until a transplant can be done”! That could have sent me into a panic! In some cases, he was right of course – I can well believe that is what he has read about it.
Right, time for SCD. My fix. Who will be out? Don’t want any of them to go. Sob. (Get a life, Sharon!)
Tuesday, November 08, 2005
Where have I been?
The computer has taken a back seat in the last month, hence my lack of blog posts and email contact – both of which in general require a lengthy session – although I have managed to pop up on the odd forum here and there.
That time of year has arrived again. Yes, it is time to resume my strange addiction to Strictly Come Dancing. I LOVE this programme. This is not normally my kind of show; I’ve never watched Pop Idol or X Factor or anything like that. I am not the sort of person who plans my time around the TV (good job as with only the five network channels there is often little to bother with), so tend to watch programmes that can be seen in isolation, like documentaries or things like Grand Designs (How cool? To design and build your own house? But how stressful!).
What do I love about SCD? Of course, there is the connection with Dirty Dancing, all-time favourite girlie movie, reminiscent of teenage years and one-time crush on Patrick Swayze. The fact that I can’t dance and am usually too shy to try makes me in absolute awe of the celebrities who put themselves under that pressure and scrutiny in the name of charity, and even greater awe of the professionals who make it look so perfect and effortless, just like I was blown away by Cynthia Rhodes’ dancing in DD. I avidly watch both the show itself and the fanzine It Takes Two, having to video them as they coincide with the girls’ bedtime..
Last year, I felt the winners of Strictly, Jill and Darren, were head and shoulders above the others. This year, there are a lot of good couples. I think my current favourites are Patsy and Anton, as I like their dancing and also think they both come across as humorous, down to earth people. I wish people didn’t have to get voted out (although this is how they make the money for charity) so you could see how everyone progressed over the time period. I also feel sorry for them when they have put in so much time and effort.
I think there are still five weeks to go, so still plenty for me to look forward to. My increased TV viewing (as well as a return by the amusing Mitchell brothers) has brought my nine month abstinence from Eastenders to an end. Arghhhhhhhhh! Have also got back into Holby City, after trying to break that cycle.
To make things worse, 31st October saw the release on DVD of Star Wars Episode III, Revenge of the Sith. We tried to fit in a viewing of the other five beforehand but only got through Episodes IV and V. Despite our best intentions, we missed out on seeing Episode III at the cinema so this had been eagerly awaited. I think Star Wars is like Marmite, you either love it or hate it, and being firmly in the former category (part of my assimilation into Sci-Fi by Andy), I really enjoyed it, and thought it a good completion of the saga. Personally, I am incredibly impressed by this whole, detailed, concept that George Lucas has created, and I disagree with critics who say that this or that should have been done some other way. It is the way it is, and I love it!
I have also been taking on some more work in the evenings the last couple of weeks, so, excuses over, I solemnly promise to deliver in the next week:
1) A blog post with news!
2) Emails to people who may be wondering why they haven’t heard from me.
Off now to put all the blasted links in this post, and to watch video from earlier of SCD It Takes Two, Eastenders and Holby City. I think my life may lack excitement…..
That time of year has arrived again. Yes, it is time to resume my strange addiction to Strictly Come Dancing. I LOVE this programme. This is not normally my kind of show; I’ve never watched Pop Idol or X Factor or anything like that. I am not the sort of person who plans my time around the TV (good job as with only the five network channels there is often little to bother with), so tend to watch programmes that can be seen in isolation, like documentaries or things like Grand Designs (How cool? To design and build your own house? But how stressful!).
What do I love about SCD? Of course, there is the connection with Dirty Dancing, all-time favourite girlie movie, reminiscent of teenage years and one-time crush on Patrick Swayze. The fact that I can’t dance and am usually too shy to try makes me in absolute awe of the celebrities who put themselves under that pressure and scrutiny in the name of charity, and even greater awe of the professionals who make it look so perfect and effortless, just like I was blown away by Cynthia Rhodes’ dancing in DD. I avidly watch both the show itself and the fanzine It Takes Two, having to video them as they coincide with the girls’ bedtime..
Last year, I felt the winners of Strictly, Jill and Darren, were head and shoulders above the others. This year, there are a lot of good couples. I think my current favourites are Patsy and Anton, as I like their dancing and also think they both come across as humorous, down to earth people. I wish people didn’t have to get voted out (although this is how they make the money for charity) so you could see how everyone progressed over the time period. I also feel sorry for them when they have put in so much time and effort.
I think there are still five weeks to go, so still plenty for me to look forward to. My increased TV viewing (as well as a return by the amusing Mitchell brothers) has brought my nine month abstinence from Eastenders to an end. Arghhhhhhhhh! Have also got back into Holby City, after trying to break that cycle.
To make things worse, 31st October saw the release on DVD of Star Wars Episode III, Revenge of the Sith. We tried to fit in a viewing of the other five beforehand but only got through Episodes IV and V. Despite our best intentions, we missed out on seeing Episode III at the cinema so this had been eagerly awaited. I think Star Wars is like Marmite, you either love it or hate it, and being firmly in the former category (part of my assimilation into Sci-Fi by Andy), I really enjoyed it, and thought it a good completion of the saga. Personally, I am incredibly impressed by this whole, detailed, concept that George Lucas has created, and I disagree with critics who say that this or that should have been done some other way. It is the way it is, and I love it!
I have also been taking on some more work in the evenings the last couple of weeks, so, excuses over, I solemnly promise to deliver in the next week:
1) A blog post with news!
2) Emails to people who may be wondering why they haven’t heard from me.
Off now to put all the blasted links in this post, and to watch video from earlier of SCD It Takes Two, Eastenders and Holby City. I think my life may lack excitement…..
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