Two days after my last post my mum had a stroke while dozing in her chair after tea. She was taken to hospital groggy, but communicating and conscious and was stable overnight. The next morning she deteriorated and we were called up to the hospital. It was obvious from looking at her, and from the doctor’s words, that things were bad, and the CT confirmed it. She had suffered a huge bleed which had affected the whole left side of her brain. She was expected to pass away within a couple of hours, but she just wasn’t ready and fought so hard, that it was actually thirty six hours. She died at around 11:45 pm the next night.
Her funeral was Friday June 9th, and her ashes will be interred this coming Tuesday.
I’m not ready to say much more than the bare facts right now. I am coping. My family is coping. The Lord is giving me comfort. I love her and miss her.
Rest in peace, Mum.
My Girls
Sunday, June 11, 2006
Tuesday, May 23, 2006
Moving forward....albeit slowly
New blog for Hannah
I have decided to change Hannah’s caringbridge page into a blog, for a number of reasons. Firstly, I want it to be customisable (big hint to Andy!) and be able to make her a really special page. Secondly, caringbridge can censor their pages, and will not allow you to post links to other caringbridge pages….which a lot of our liver friends have. I’d love to have links to all our online friends’ pages…please send me any you’d like included. Thirdly, I want Hannah’s journal to be searchable, so that people new to biliary atresia or liver disease can come across it.
I don’t want to leave the caringbridge page up indefinitely, for two reasons; someone else could use the space, and I hate defunct websites that haven’t been updated in an age. This means I have been busy copying and pasting all the past updates into the new blog, with the correct dates and times….quite time consuming. So, although I still have a ton of work to do on the new blog, you can find it at www.hannahmcbride.blogspot.com. I will keep the CB page open for the moment also, while things are still in progress.
Why do I need to have a blog for me and a separate one for Hannah? To me, they have very separate purposes…..my blog is my random musings on my life, my thinking out loud place - and the focus of it is me. Hannah’s page always has been somewhere to provide updates on her health and development, and I want to continue that. I guess there will sometimes be posts that I am not quite sure where to put them, but I am not going to double post things in both blogs, unless they are of earth shattering importance! I’ll just post links to Hannah’s blog on mine if there is an update.
The time has come
The car must go. The finances must be sorted. I must get my CLDF fundraising stuff sent off. Before the end of the month. IT WILL HAPPEN. I CAN DO IT.
And speaking of the car, didn’t I put the shiny new wheel trims on – it looked great – only to crack one of them on the kerb at the petrol station.
Caitlin going to school
It’s getting nearer. Last week we went to the parents’ introductory meeting. There is only just over half a term left at nursery…this year seems to have flown by at an extraordinary rate
Lots of mixed feelings…she is hardly going to be four, and she will be out of the house most of the day, and I will miss her! I don’t feel too anxious about her, as she has proven to be an adaptable and confident child all along. I think she may be a little tired to start with, and I am planning on continued use of the double pushchair for the school run, whilst encouraging her to walk, as we do now…the pushchair is very manoeuvrable and light, but I can feel the difference when she gets in! That makes around 60lb of children (more than half my body weight!) – but two miles is a long way for her little legs to trot, so I am prepared to allow her to hop in and out.
I can’t believe that my baby girl is growing up so fast. She is already making good progress with letters and numbers, and writing and spelling her name are on the way. I am also looking forward to this new adventure for her, which I know she will really enjoy…..and to a little more time to myself, especially when Hannah does a couple of sessions at preschool next January!
I am also not looking forward to having to prepare packed lunches…hey ho, but I am not sure we can afford the school meals, even though they look great – I think I could make her lunch for half the cost….maybe I can stretch to one or two a week, or maybe they don’t like you to chop and change….I can find out. It means I could prepare them for Andy too, saving more money…and for Hannah and I, to enable us a bit more flexibility to get out and about for the day.
This time in four weeks….
…we will be on holiday….hooray! Let’s see if I can be organised….confidence is not high! I do hope the British summer gives us at least a few days of beach weather…I know there’s lots we can do in the rain, but preferably not every day. Last year was excellent, and we all enjoyed ourselves, but the age Hannah was (not yet walking but crawling) she ended up spending lots of her time sitting in a buggy. I will enjoy seeing her participating more in things this year.
Well, I wrote this four days ago, and forgot to post it….the update is that the car now contains a ‘For Sale’ notice!
I have decided to change Hannah’s caringbridge page into a blog, for a number of reasons. Firstly, I want it to be customisable (big hint to Andy!) and be able to make her a really special page. Secondly, caringbridge can censor their pages, and will not allow you to post links to other caringbridge pages….which a lot of our liver friends have. I’d love to have links to all our online friends’ pages…please send me any you’d like included. Thirdly, I want Hannah’s journal to be searchable, so that people new to biliary atresia or liver disease can come across it.
I don’t want to leave the caringbridge page up indefinitely, for two reasons; someone else could use the space, and I hate defunct websites that haven’t been updated in an age. This means I have been busy copying and pasting all the past updates into the new blog, with the correct dates and times….quite time consuming. So, although I still have a ton of work to do on the new blog, you can find it at www.hannahmcbride.blogspot.com. I will keep the CB page open for the moment also, while things are still in progress.
Why do I need to have a blog for me and a separate one for Hannah? To me, they have very separate purposes…..my blog is my random musings on my life, my thinking out loud place - and the focus of it is me. Hannah’s page always has been somewhere to provide updates on her health and development, and I want to continue that. I guess there will sometimes be posts that I am not quite sure where to put them, but I am not going to double post things in both blogs, unless they are of earth shattering importance! I’ll just post links to Hannah’s blog on mine if there is an update.
The time has come
The car must go. The finances must be sorted. I must get my CLDF fundraising stuff sent off. Before the end of the month. IT WILL HAPPEN. I CAN DO IT.
And speaking of the car, didn’t I put the shiny new wheel trims on – it looked great – only to crack one of them on the kerb at the petrol station.
Caitlin going to school
It’s getting nearer. Last week we went to the parents’ introductory meeting. There is only just over half a term left at nursery…this year seems to have flown by at an extraordinary rate
Lots of mixed feelings…she is hardly going to be four, and she will be out of the house most of the day, and I will miss her! I don’t feel too anxious about her, as she has proven to be an adaptable and confident child all along. I think she may be a little tired to start with, and I am planning on continued use of the double pushchair for the school run, whilst encouraging her to walk, as we do now…the pushchair is very manoeuvrable and light, but I can feel the difference when she gets in! That makes around 60lb of children (more than half my body weight!) – but two miles is a long way for her little legs to trot, so I am prepared to allow her to hop in and out.
I can’t believe that my baby girl is growing up so fast. She is already making good progress with letters and numbers, and writing and spelling her name are on the way. I am also looking forward to this new adventure for her, which I know she will really enjoy…..and to a little more time to myself, especially when Hannah does a couple of sessions at preschool next January!
I am also not looking forward to having to prepare packed lunches…hey ho, but I am not sure we can afford the school meals, even though they look great – I think I could make her lunch for half the cost….maybe I can stretch to one or two a week, or maybe they don’t like you to chop and change….I can find out. It means I could prepare them for Andy too, saving more money…and for Hannah and I, to enable us a bit more flexibility to get out and about for the day.
This time in four weeks….
…we will be on holiday….hooray! Let’s see if I can be organised….confidence is not high! I do hope the British summer gives us at least a few days of beach weather…I know there’s lots we can do in the rain, but preferably not every day. Last year was excellent, and we all enjoyed ourselves, but the age Hannah was (not yet walking but crawling) she ended up spending lots of her time sitting in a buggy. I will enjoy seeing her participating more in things this year.
Well, I wrote this four days ago, and forgot to post it….the update is that the car now contains a ‘For Sale’ notice!
Monday, May 08, 2006
Excellent clinic visit!
Hannah’s outpatient appointment at the local hospital on Friday went very well indeed! She now weighs 12.2 kg (around 26 lb 12 oz) from the last weight of 10.75 kg which I was worried about back in Feb…so no worries now. Her liver is still enlarged about 2-3 cm below her ribs, but has not got any bigger since November, and her spleen is not palpable. Her blood results were excellent (Bilirubin 8, ALT 25 – woo-hoo!, Alk Phos 275)
So although this was just a basic check up with a general paediatrician, it could not have gone any better, and I am VERY HAPPY! I am going to enjoy these results until we go over to Birmingham for a more detailed check up in the summer.
Mum’s big day also went well :)
So although this was just a basic check up with a general paediatrician, it could not have gone any better, and I am VERY HAPPY! I am going to enjoy these results until we go over to Birmingham for a more detailed check up in the summer.
Mum’s big day also went well :)
Thursday, May 04, 2006
Tired, happy, and a little nervous
Busy day today….
Woke up grumpy, shouting at kids :( until restored by caffeine fix an hour later.
Trip to post letters with Hannah walking (wrist strap deployed!) took half an hour! It just melts my heart when the girls walk along holding hands…intermittently, as Caitlin doesn’t like sweaty hands.
Dug up some more weeds (the garden is improving hugely after 2 days hard work last weekend :)) with help from the girls. Hannah can now tackle Caitlin’s slide unaided….yikes.
Caitlin’s three year old view on the disappearance of the ladybird she adopted…."I DON’T WANT TO WAIT FOR ANOTHER ONE! I WANT ONE NOW!"
Hannah is fascinated by ants….I loathe the buggers, especially as they keep coming into my kitchen, and the shops all seem to have sold out of ant killer….however my opinion of them improved tenfold today when I saw how long it kept her occupied trying to catch them….”’pider, wait ‘pider”
Then lunch, and the nursery run, voting in the city council election on the way back. A lovely walk in glorious sunshine :)
A brief sit down, then a few chores, and a run up to the hospital with Dad (routine appt). A bit of shopping, pick Caitlin up from nursery, drop girls at Von’s for tea, bring Mark back here for his maths lesson.
15 mins in, it’s time to collect Dad, this time in the rush hour, then back to finish Mark’s lesson. Then a coffee, and some tea…girls in their jamas, and off to work.
Then some bit and bobs on the computer, accompanied by a couple of glasses of wine.
And here I am…
Nerves about tomorrow
Hannah’s clinic visit at the local hospital is tomorrow morning. Still feeling nervous about it, mainly because of the length of time since the last visit and the fact that liver deterioration can be asymptomatic until a very late stage. Will update on this tomorrow.
Mum also has a big day tomorrow. I hope and pray from the bottom of my heart that it goes well for her.
A Summer’s Day
Amazingly, the weather has been truly glorious today, and it is only May 4th! Thank you Lord…the sunshine always gives me a lift, and anyone with small children will appreciate the relative ease of getting out of the house when the weather is warm.
Comments
I want to thank all of my friends for the supportive comments you leave on my blog.
Woke up grumpy, shouting at kids :( until restored by caffeine fix an hour later.
Trip to post letters with Hannah walking (wrist strap deployed!) took half an hour! It just melts my heart when the girls walk along holding hands…intermittently, as Caitlin doesn’t like sweaty hands.
Dug up some more weeds (the garden is improving hugely after 2 days hard work last weekend :)) with help from the girls. Hannah can now tackle Caitlin’s slide unaided….yikes.
Caitlin’s three year old view on the disappearance of the ladybird she adopted…."I DON’T WANT TO WAIT FOR ANOTHER ONE! I WANT ONE NOW!"
Hannah is fascinated by ants….I loathe the buggers, especially as they keep coming into my kitchen, and the shops all seem to have sold out of ant killer….however my opinion of them improved tenfold today when I saw how long it kept her occupied trying to catch them….”’pider, wait ‘pider”
Then lunch, and the nursery run, voting in the city council election on the way back. A lovely walk in glorious sunshine :)
A brief sit down, then a few chores, and a run up to the hospital with Dad (routine appt). A bit of shopping, pick Caitlin up from nursery, drop girls at Von’s for tea, bring Mark back here for his maths lesson.
15 mins in, it’s time to collect Dad, this time in the rush hour, then back to finish Mark’s lesson. Then a coffee, and some tea…girls in their jamas, and off to work.
Then some bit and bobs on the computer, accompanied by a couple of glasses of wine.
And here I am…
Nerves about tomorrow
Hannah’s clinic visit at the local hospital is tomorrow morning. Still feeling nervous about it, mainly because of the length of time since the last visit and the fact that liver deterioration can be asymptomatic until a very late stage. Will update on this tomorrow.
Mum also has a big day tomorrow. I hope and pray from the bottom of my heart that it goes well for her.
A Summer’s Day
Amazingly, the weather has been truly glorious today, and it is only May 4th! Thank you Lord…the sunshine always gives me a lift, and anyone with small children will appreciate the relative ease of getting out of the house when the weather is warm.
Comments
I want to thank all of my friends for the supportive comments you leave on my blog.
Tuesday, April 18, 2006
Making a little sense of my personal chaos
This blog is subtitled ‘A place to get my thoughts together’, and I haven’t used it as such for a while….maybe that’s why I have seemingly dozens of fragmented and unrelated ideas whizzing around in my brain, with not a coherent thought among them. I thought this meant it was time for a little writing therapy.
Self Frustration
I’m feeling pretty fed up that my New Year’s resolutions (damn, knew I shouldn’t have put them in black and white) are barely any nearer to completion, and May is approaching. I still have the car….I should have sold it over a year ago. The trouble is, it is always on the medium rather than the high priority list. Same with all my lofty ambitions to raise money for CLDF…they never make it onto the “bad shit will happen soon if you don’t do this now” list, which is the only one things ever get done from. Every time I think I am going to have a few days to breathe and to sort some of the backlog out, something scuppers my plans.
Oh, I so want to be an organised person! I have read and been given lots of tips and sound advice…but the one of the things none of them ever say is when I am supposed to find time to set it all up. Or how you get quickly back on an even keel after disruption to your routine, or how to be flexible enough that unplanned events do not upset it too much. I think I need one of these life coaching gurus or something….somebody help me!
Really, the trouble with me is that I want instant results. My organisation is much better than it was a year ago, but slow steps irritate me. I keep on wanting to wake up tomorrow and be instantly transformed into super mum. Silly I know. I shall continue doing what I am doing, which is getting up each day and doing my best, and trying to remember to count my many blessings.
Liver Disease
I have lots of our liver disease friends in my thoughts and prayers at the moment. Several children from Liver Families are acutely unwell at the moment. One has just received a new liver, and the family are anxiously waiting for their little one to stabilise. Another has anaphylactic reactions to … nothing. Another is having breathing problems, and needed to be resuscitated during a simple procedure.
Here in the UK, an adult BA patient who was transplanted a few years ago is very ill, and needs a second transplant urgently. I am also thinking of my dear friend Elly and her beautiful son Arthur, who has an endoscopy this week.
I won’t go on and on, but there are others too. Sometimes the difficult aspect of mutual support is that I am reminded of just how hard things could be for us in the future, and how suddenly your life can change in the world of liver disease. But it also makes me appreciate every day that Hannah is stable and healthy – and of course Caitlin too. I also appreciate the fact that here in the UK we have free access to good quality medical care.
I would never want to be without my ‘liver disease’ friends, who are some of the most incredible people I have ever encountered. They have given me knowledge, support, friendship and much, much more. The fact that I know they will be there for me if the road gets rockier for Hannah is an amazing comfort. I pray for strength and peace for them all and healing for their children.
Nervous
Our six months in liver disease limbo since last bloods and local clinic visit are almost at an end, and the next couple of months will give a slightly more accurate picture of how Hannah is progressing. I can see a healthy and happy child, but I am aware that appearances can be deceptive, and the paranoia is starting to rise.
Next week Hannah will have bloods, so that is the first thing for me to worry about. I can see she obviously isn’t jaundiced, but the others could be pretty much anything. I just hope they are stable and still normal! The local clinic visit is the following week, and then I will find out if her liver is more enlarged as I suspect, and whether that has any short term implications, and also if her spleen has become enlarged at all. More nerves there.
In July (I believe, although the appointment has not come through yet) we go over to Birmingham for the first time in a year. I think (!) that Hannah will be having an ultrasound and also the bile acid test then, and we will have a clinic appointment too. The ultrasound will tell us whether she has portal hypertension, so finally I confront my biggest fear head on for the first time.
In the meantime I am appreciating my blissful ignorance, and hoping that these are to be Hannah’s only encounters with hospital personnel in the near future.
I am also concerned about Caitlin and her recurrent constipation, and the lack of explanation for it. I have requested investigation by a paediatrician, as the GPs can’t do a whole lot except prescribe lactulose and senna, but four weeks later I am still awaiting even a letter to tell me when the appointment is. All I can do is try my best to keep her comfortable.
Resolution
More later. That helped.
Self Frustration
I’m feeling pretty fed up that my New Year’s resolutions (damn, knew I shouldn’t have put them in black and white) are barely any nearer to completion, and May is approaching. I still have the car….I should have sold it over a year ago. The trouble is, it is always on the medium rather than the high priority list. Same with all my lofty ambitions to raise money for CLDF…they never make it onto the “bad shit will happen soon if you don’t do this now” list, which is the only one things ever get done from. Every time I think I am going to have a few days to breathe and to sort some of the backlog out, something scuppers my plans.
Oh, I so want to be an organised person! I have read and been given lots of tips and sound advice…but the one of the things none of them ever say is when I am supposed to find time to set it all up. Or how you get quickly back on an even keel after disruption to your routine, or how to be flexible enough that unplanned events do not upset it too much. I think I need one of these life coaching gurus or something….somebody help me!
Really, the trouble with me is that I want instant results. My organisation is much better than it was a year ago, but slow steps irritate me. I keep on wanting to wake up tomorrow and be instantly transformed into super mum. Silly I know. I shall continue doing what I am doing, which is getting up each day and doing my best, and trying to remember to count my many blessings.
Liver Disease
I have lots of our liver disease friends in my thoughts and prayers at the moment. Several children from Liver Families are acutely unwell at the moment. One has just received a new liver, and the family are anxiously waiting for their little one to stabilise. Another has anaphylactic reactions to … nothing. Another is having breathing problems, and needed to be resuscitated during a simple procedure.
Here in the UK, an adult BA patient who was transplanted a few years ago is very ill, and needs a second transplant urgently. I am also thinking of my dear friend Elly and her beautiful son Arthur, who has an endoscopy this week.
I won’t go on and on, but there are others too. Sometimes the difficult aspect of mutual support is that I am reminded of just how hard things could be for us in the future, and how suddenly your life can change in the world of liver disease. But it also makes me appreciate every day that Hannah is stable and healthy – and of course Caitlin too. I also appreciate the fact that here in the UK we have free access to good quality medical care.
I would never want to be without my ‘liver disease’ friends, who are some of the most incredible people I have ever encountered. They have given me knowledge, support, friendship and much, much more. The fact that I know they will be there for me if the road gets rockier for Hannah is an amazing comfort. I pray for strength and peace for them all and healing for their children.
Nervous
Our six months in liver disease limbo since last bloods and local clinic visit are almost at an end, and the next couple of months will give a slightly more accurate picture of how Hannah is progressing. I can see a healthy and happy child, but I am aware that appearances can be deceptive, and the paranoia is starting to rise.
Next week Hannah will have bloods, so that is the first thing for me to worry about. I can see she obviously isn’t jaundiced, but the others could be pretty much anything. I just hope they are stable and still normal! The local clinic visit is the following week, and then I will find out if her liver is more enlarged as I suspect, and whether that has any short term implications, and also if her spleen has become enlarged at all. More nerves there.
In July (I believe, although the appointment has not come through yet) we go over to Birmingham for the first time in a year. I think (!) that Hannah will be having an ultrasound and also the bile acid test then, and we will have a clinic appointment too. The ultrasound will tell us whether she has portal hypertension, so finally I confront my biggest fear head on for the first time.
In the meantime I am appreciating my blissful ignorance, and hoping that these are to be Hannah’s only encounters with hospital personnel in the near future.
I am also concerned about Caitlin and her recurrent constipation, and the lack of explanation for it. I have requested investigation by a paediatrician, as the GPs can’t do a whole lot except prescribe lactulose and senna, but four weeks later I am still awaiting even a letter to tell me when the appointment is. All I can do is try my best to keep her comfortable.
Resolution
More later. That helped.
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