The house is gradually becoming de-cluttered. This is the plan: give everything a home or put it in the loft. Organise cupboards and shelving. Get one box/bag down from the loft at a time and sort it out (hopefully getting rid of most of loft contents). One day it may get to the stage where we can actually organise the loft so that we can find the stuff that is up there easily and have enough space left to use it as a room. I can dream…..I feel very positive about this, if I can do this, maybe I can organise other things too! I have also been ironing!!!!!!!!!!
Caitlin has now had a week of the summer holiday from pre-school. Although she has been somewhere most days it still seems like a task to keep her occupied. I’ve had one or two inspirations that have kept her busy for a while but feel as if I need more. Next week I am hoping it will be fine so that we can maybe go to the park a couple of times and I should really get organised to go swimming or find out if there are any M+T groups on during the holidays near here.
As usual I have so much to do and I am trying really hard to focus on one thing at a time otherwise I will panic. Caitlin’s birthday is a week on Thursday and I haven’t planned the party or shopped for presents. We are planning to get her a trike but haven’t thought further than that yet. When I asked her if there was anything she might like she replied “a Wellington boot money box” which they sell in Allen’s Gift Centre, so at least that’s easy. I usually have to buy presents on behalf of other people too so will have to get busy. Hannah’s birthday is only 2 weeks later and I am really struggling there. We have got loads of toys suitable for her and it is not the season to shop for winter clothes. I am determined to try not to get too stressed about either of the birthdays and try and enjoy them.
The girls seem to be growing up more every day. Hannah is getting closer to walking and talking. Her new skill is giving you things and also putting things in and out of containers. The latter is a great hobby which should be encouraged. It can still keep Caitlin occupied for 20 minutes. Caitlin is completely out of nappies apart from when she is sleeping and accidents have been minimal. I am really proud of how well she is remembering to go when needed. The two of them are starting to play together and interact properly now and it brings joy to my heart. When we were walking to the library on Friday they were giggling away together in the pushchair for reason I couldn’t understand. It was wonderful to hear.
Tomorrow it will be August. It will be a very busy month and I am hoping for two things: that I remain reasonably calm throughout and also for a bit of summer weather (which would also help with the backlog of washing!)
My Girls
Sunday, July 31, 2005
Friday, July 08, 2005
Joy and Sorrow
Sharing experiences with other people whose lives are affected by liver disease and in particular biliary atresia has been the single biggest thing that has helped me come to terms with Hannah’s illness. This is why I have the desire to set up some sort of UK based forum. Initially I am thinking fairly small; an online forum specifically aimed at BA in this country. Eventually, the sky’s the limit – perhaps a national Biliary Atresia Support Network, and/or a liver disease forum for the UK similar to CLASS, maybe in conjuction with CLDF. Even setting up the initial basic forum at present seems like a large task and any ideas or offers of help will be gratefully received!
This sharing of other people’s experiences, in my view, not only provides mutual support and understanding which those not directly affected find difficult to deliver, but also helps you keep a healthy perspective on things. You are not alone on your journey, and you see the reality of the disease as a whole, not just your own experiences of it. The individual relationships that can also be struck up are even more precious.
Of course, in order to benefit from this mutual support, you have to give of yourself. You have to take on board other people’s problems, try and empathise with them, pray with them and for them. I think everyone does this, regardless of whether or not they post prolifically or mostly just read.
The world of liver disease is a microcosm of life. There is joy, tragedy, hope, despair, and plenty of good humour and resilience. It’s just more concentrated – rather like Eastenders.
The joy this week was learning that Molly, age 2, from the UK, received her new liver just under two weeks ago. Molly had biliary atresia and had been waiting for a liver since before Christmas. Last I heard she was doing very well and was out of ICU. The sorrow was double edged – firstly for Molly’s donor family (what a gift they have given!), then secondly for Daniel, age 1, from the US, who was doing well after a transplant in April and who died suddenly a fortnight ago. He also had biliary atresia.
These families will be in my thoughts and prayers – and I am lucky enough to know I would be in theirs should it be needed.
I have also been thinking this week about those countries where transplantation is not an option. I have read a lot of cries for help from people who are trying to raise huge sums of money to travel abroad for a liver transplant, while their child is dying of liver failure before their eyes. It is heartbreaking.
I have learned so much already on this journey, not least that nothing we have should ever be taken for granted. And I still have so much further to go……
This sharing of other people’s experiences, in my view, not only provides mutual support and understanding which those not directly affected find difficult to deliver, but also helps you keep a healthy perspective on things. You are not alone on your journey, and you see the reality of the disease as a whole, not just your own experiences of it. The individual relationships that can also be struck up are even more precious.
Of course, in order to benefit from this mutual support, you have to give of yourself. You have to take on board other people’s problems, try and empathise with them, pray with them and for them. I think everyone does this, regardless of whether or not they post prolifically or mostly just read.
The world of liver disease is a microcosm of life. There is joy, tragedy, hope, despair, and plenty of good humour and resilience. It’s just more concentrated – rather like Eastenders.
The joy this week was learning that Molly, age 2, from the UK, received her new liver just under two weeks ago. Molly had biliary atresia and had been waiting for a liver since before Christmas. Last I heard she was doing very well and was out of ICU. The sorrow was double edged – firstly for Molly’s donor family (what a gift they have given!), then secondly for Daniel, age 1, from the US, who was doing well after a transplant in April and who died suddenly a fortnight ago. He also had biliary atresia.
These families will be in my thoughts and prayers – and I am lucky enough to know I would be in theirs should it be needed.
I have also been thinking this week about those countries where transplantation is not an option. I have read a lot of cries for help from people who are trying to raise huge sums of money to travel abroad for a liver transplant, while their child is dying of liver failure before their eyes. It is heartbreaking.
I have learned so much already on this journey, not least that nothing we have should ever be taken for granted. And I still have so much further to go……
Hannah’s news
Starting with the easy one, this is almost the same as the journal update on her CaringBridge page.
The last few weeks have been busy for Hannah. She had blood tests done on 3rd June (not a whimper, brave girl) and we obtained the results on 10th June at an appointment with Dr Coad. Her LFTs remain stable, in normal range apart from a mildly elevated ALT. Here are the results.
Total bilirubin 5
ALP 344
ALT 60
I also raised the issues we have had with the paediatric assessment unit (help, something else to blog about!) at this visit and have since received a copy of a letter Dr Coad has sent to them so hopefully next time there will not be any more problems….hmm, won’t hold my breath….
Monday 4th July was our first visit to Liver Clinic since January. Unfortunately we did not get to see Dr McKiernan but did see an excellent registrar who was most informative and receptive. There was plenty of good news. If things continue as they are, and subject to confirmation from Dr McKiernan, then she can stop her vitamins in October (1 year post Kasai), return to Birmingham in a year, and move to 6 monthly blood tests and local hospital visits. Woohoo!!!
She will continue indefinitely on her rotation of antibiotics. In a way this is a relief as I would feel extremely nervous about her stopping them. Her Urso has been increased from 60 mg twice a day to 100 mg twice a day. This is partly as her weight has increased and also to try to relieve the itching she gets in her ears (she scratches them until they bleed). If this fails then we have been advised to try Piriton (an antihistamine) before moving on to any of the more heavy duty itching meds.
More good news – her liver is now a normal size and long may that continue! The veins on her tummy which had been dismissed locally as ‘insignificant’ were discussed as a possible symptom of portal hypertension. The doctor said it was encouraging that her liver and spleen are not really enlarged but reassured us that this would be monitored and we may have an ultrasound at our next visit to see ‘what’s going on in there’.
So all in all a good visit and our little miracle girl continues to astound us.
The last few weeks have been busy for Hannah. She had blood tests done on 3rd June (not a whimper, brave girl) and we obtained the results on 10th June at an appointment with Dr Coad. Her LFTs remain stable, in normal range apart from a mildly elevated ALT. Here are the results.
Total bilirubin 5
ALP 344
ALT 60
I also raised the issues we have had with the paediatric assessment unit (help, something else to blog about!) at this visit and have since received a copy of a letter Dr Coad has sent to them so hopefully next time there will not be any more problems….hmm, won’t hold my breath….
Monday 4th July was our first visit to Liver Clinic since January. Unfortunately we did not get to see Dr McKiernan but did see an excellent registrar who was most informative and receptive. There was plenty of good news. If things continue as they are, and subject to confirmation from Dr McKiernan, then she can stop her vitamins in October (1 year post Kasai), return to Birmingham in a year, and move to 6 monthly blood tests and local hospital visits. Woohoo!!!
She will continue indefinitely on her rotation of antibiotics. In a way this is a relief as I would feel extremely nervous about her stopping them. Her Urso has been increased from 60 mg twice a day to 100 mg twice a day. This is partly as her weight has increased and also to try to relieve the itching she gets in her ears (she scratches them until they bleed). If this fails then we have been advised to try Piriton (an antihistamine) before moving on to any of the more heavy duty itching meds.
More good news – her liver is now a normal size and long may that continue! The veins on her tummy which had been dismissed locally as ‘insignificant’ were discussed as a possible symptom of portal hypertension. The doctor said it was encouraging that her liver and spleen are not really enlarged but reassured us that this would be monitored and we may have an ultrasound at our next visit to see ‘what’s going on in there’.
So all in all a good visit and our little miracle girl continues to astound us.
Too many things to blog about…….
The last few weeks have been very busy for us and so much has happened in the news that I have been left with an outstanding list of things to blog about.
I am going to attempt to work my way through as many of the following topics as possible:
Hannah’s clinic visits and blood tests
Our fantastic holiday!
Views on abortion (I’m not afraid to be controversial am I??)
The London bombings
Other children with biliary atresia
The title of my blog – although maybe this should be altered to ‘So much to say, so little time!)
There will probably be more – best get cracking!
I am going to attempt to work my way through as many of the following topics as possible:
Hannah’s clinic visits and blood tests
Our fantastic holiday!
Views on abortion (I’m not afraid to be controversial am I??)
The London bombings
Other children with biliary atresia
The title of my blog – although maybe this should be altered to ‘So much to say, so little time!)
There will probably be more – best get cracking!
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