Quick update

There has been nothing notable to report since my last update, but I thought it was time to stop in and say that no news from me is invariably good news. Hannah is her usual sassy self and there have been no appointments or tests to comment on. So all is good. I can use my favourite words 'normal' and 'stable'.

Ooh, how could I forget?!? Hannah is now officially a cover girl! She appears on the front cover of the Winter 07/08 issue of the CLDF's Delivery Magazine.

Here is a link to the pdf version of the magazine. As usual she was filthy (covered in paint from the creche at the conference and chocolate from a cake she had just eaten) but it's a picture that truly shows her mischievous personality and that spark of vitality she has.

Reminder - every day is a gift

It's a while since I updated, but there hasn't really been anything new to report. That's good, I've had a few weeks where it's been easy to pretend that liver disease isn't part of our family life :) Hannah has continued to thrive at nursery - she seems to be friends with everyone and at the parents' meeting her teachers said she listens really well! Why doesn't she listen to me?!? She wants to be able to read and write like Caitlin, so she makes up stories to go with the pictures in books and can do a great 'H' to mark things with her name. It will be time to get the hankies out next week when she does her nativity, and then again for Caitlin's the following week.

Hannah is at clinic at the local hospital on Friday (the one where the doctor asks me how she is doing....) and we had her bloods drawn today. I have also been writing an article about BA; not a personal perspective, but a factual one. As I have been writing, I have been thinking that this disease I am writing about sounds really depressing. And it does. I started to write something about long term outlook and survival and thought, I don't want to write about the fact that there are survival statistics, that some children die. I want to write about the hope that there is, not the worst imaginable. But it would be a lie, and an injustice to the children who have died and their families, especially those who are in my heart and I call friends. I want to write about the hope to protect myself from the reality of the darkest place a parent can go. Up until then, I was writing in a fairly dispassionate way; it was only when I got to that survival part that I thought about those precious children and then CRAP! - my daughter has this, and I want to make it sound like it's all going to be ok.

So I left what I was writing, and came here to write about feelings not facts. As I logged in, I saw how many weeks it was since I updated, and then started off recording that the reason I haven't been here is 'normal life' and a happy, thriving three year old. So what started off as a tight little knot of fear has dissolved into an appreciation of everyday life with Hannah and a reminder that it is something to be celebrated here more regularly.

Three years today since Kasai

...and there is so much to celebrate and be thankful for. Three years of answered prayers.

A day to appreciate being at home just getting on with life, to enjoy the fact that the children have no idea of the significance of the day.

A day to look at Hannah, to hold her close, and give thanks for my miracle.

First Day at Nursery

Hannah started at nursery today! She was very excited beforehand as Caitlin has been telling her all about what to expect. She was thrilled to wear a uniform and be just like her big sister. Today's session was only an hour with half the children there as an induction, and the parents stayed too. They build it up for the next two days then the full sessions (2.5 hours) start on Monday.

Hannah had a great time and didn't want to leave at the end! She managed to cram an awful lot of busyness into an hour, and already has plans for what she is going to do tomorrow!

I can't believe how grown up she looks in her uniform...and I feel sad and excited at the same time that I am going to have every weekday morning to myself....my baby is growing up too fast!

Hannah is 3!!!!!

HAPPY BIRTHDAY HANNAH!!!

When you have a child with a chronic illness, birthdays are a strange entity. A reminder of the miracle that is in front of you, a lesson that nothing in life is to be taken for granted. A time for great joy, but also a time when the fragility of life is markedly obvious.

One year ago today, I posted with the wonderful news that Hannah had made it to two years old, a milestone that she would never have reached without life saving surgery. Not only that, but she reached that milestone by hurtling full on towards it, not by stumbling along. And now, we have had another whole year of amazing and wonderful health. The future will always be uncertain, but there will never be any doubt about the blessings that we have had. Thank you God for Hannah, for everything she has taught me, for the many tears I have cried and for the many times when she has brought me sweet and unbridled joy. Thank you for my miracle, and help me not to take it for granted.

Blood results from Tuesday

Hannah's blood results have come back and they are pretty stable....some in the right direction and some in the wrong direction, but overall pretty good :)

I phoned up for them so didn't get the full panel, they should come with the letter. Here are the ones I have, with commentary.

Albumin 45 (previous result 40) Albumin is a protein made in the liver, and if it isn't working well enough the albumin will be low. This is actually Hannah's highest EVER albumin, so great news!

Alk Phos 677 (previous result 1057) This can measure bile duct damage or bone damage, but can be elevated in children when their bones are growing. I'm very relieved it has dropped down so much! It's back within BCH's normal range for Hannah's age group (250-850), although still higher than Hannah's usual, so hopefully it has all been down to her growing so much recently and will continue to drop.

ALT 68 (previous result 36) ALT measures liver cell damage. Not so happy with this one, because as you can see it has jumped up since the last test to above normal range (less than 45). It is also the highest Hannah's ALT has been for over 2 years. However, it is still a good value for someone with chronic liver disease. Hoping it was a one off jump and not the start of an upwards trend.

AST 67 (previous result 56) AST also measures liver cell damage but as it is found in other parts of the body it is less specific to the liver than ALT. Again not overjoyed with the upward trend and above normal value, but like the ALT it is really not THAT high.

Bilirubin 7 (previous result 5) Low bili means no jaundice! This has hovered between 5 and 8 from a couple of months post Kasai. Normal is less than 20, so this is my favourite result. Pre Kasai my little yellow baby had a bilirubin of over 200!

Gamma GT 51 (previous result 57) Gamma GT is very specific to bile duct obstruction. Hannah's GGT is very good for someone with a bile duct disorder. The similar results mean I can use one of my favourite words - stable.

PT 11 seconds (previous result 11 seconds) This is the most important indicator of Hannah's ability to clot blood, and it is completely normal. This reaffirms that Hannah's liver is doing a very good job!

APTT 39 seconds (previous result 35 seconds) This is another blood clotting indicator. The last value of 35 was at the upper limit of normal, and the fact it is now prolonged means that her liver probably is not producing quite enough of certain clotting factors. On it's own though, it is not a concern, as long as the PT stays normal.

No varices!!!!

Yes, that's right, no varices!!!! I am so happy!

Today went really well. Hannah was a little star from start to finish, and viewed everything as a new adventure. She was very impressed by the sticky plastic covering the little blobs of numbing cream on her hands in preparation for the cannula. She held her hands out in front of her for about half an hour and wouldn't use them, and she kept prodding at the squishy bits with the cream underneath. She got through the whole day without shedding a tear, even when the cannula was put in and taken out (although I think it helped a lot that we wouldn't let her look). She recovered very quickly from her anaesthetic too.....after 10 minutes she was drinking juice, after 25 minutes she was scoffing sandwiches, crisps and a chocolate bar, and after and hour she was asking if she could go to the hospital outdoor play area.

It was about an hour and a half afterwards that the doctor came and told us there were NO VARICES!!!! I have had this worry in the back of my mind for so long that it is hard to believe it has been put to rest for now. Praise God!

We are still left with a nagging little worry. The doctor decided to take some biopsy samples of the gastrointestinal tract during the endoscopy. We are not entirely clear on the reasoning for this, whether it is routine or not, and what they may or may not be looking for. I am not good at coming up with questions when I have surprise news, so I didn't say much apart from 'I see' which I don't really. The biopsy results will take a while to come back (possibly a couple of weeks) and Dr McKiernan is away at the moment so I'm not sure when we will be able to find out more. I don't have her blood results (I did ask and it was agreed to, but the doc obviously didn't remember and neither did I until after we left) so I will be ringing tomorrow to get those, and will see if I can find anything out then.

No varices! No varices! No varices!

It's the big day tomorrow!

I can't believe how fast the last few weeks have gone. At least the waiting is now over and this time tomorrow at least we will know one way or the other.

We went over to Birmingham for the bloods today. It seemed a bit weird turning up with no forms for the bloods; I found myself thinking we would get there and they would say "Hannah WHO???" Of course the forms were waiting in phlebotomy. Amazingly we went almost straight in (number 10 was in there and we were number 11) which I think was a lot to do with my choice of going at lunchtime when there weren't any clinics running.

Hannah has bloods frequently enough that she knows what to expect, but not frequently enough to make them a matter of course. It was so much easier when she was a baby and just angry that they were sticking a needle in her and then it was forgotten. She told me in no uncertain terms beforehand that she doesn't like getting her arm checked. She was fine until we got in there and then she started struggling and saying "I don't want you to do it". We just got on with it as quickly as possible, and while the needle was in her arm she kept saying "PLEASE take it out now, PLEASE" through floods of tears. As soon as it was over and she was introduced to a singing lobster and got her stickers she was all smiles again.

We stayed at the hospital for lunch and spent some time after at the outdoor play area. Hannah has the view that the hospital is really quite a fun place (apart from the arm checking) and I want to promote that as much as possible. She doesn't remember all that she went through as a baby of course and things have been so stable since that she has not had the opportunity to build up any fear.

Everything is ready for the extraordinarily early start tomorrow. We have read 'Katie goes to the hospital' (for an ear operation) several times and Hannah understands that she won't be allowed to eat or drink and that she will be put to sleep while the doctors take pictures of the inside of her tummy with a camera. She asked if I would leave her on her own at the hospital and I said I would be with her all the time, except I wouldn't be allowed in the room while they take the pictures. She is also prepared that she may have to stay overnight (hopefully not, but nothing is a given). I've packed for an overnight stay as if I didn't that would guarantee we would have to. And I checked out the location of the medical day care centre so we know exactly where we are going.

So, we're as ready as we will ever be. Hopefully the next time I update I will be able to say Hannah's labs are great and most importantly that she has no varices.

One week to go

This time next week Hannah will have had her bloods done and we will be gearing up for the endoscopy. I will be so thankful to get it over with and know one way or the other. I so want everything to be ok and to return to our normal sense of denial for another year (barring scary unexplained fevers, but I have learned to live with those). A flu jab and the pointless check up at the local hospital will not do too much damage to that.

I have only admitted this to one person before, but ever since Hannah's kasai I have had a horrible irrational feeling that portal hypertension will be her downfall, if you like, that her liver will keep on coping (I feel sure Hannah's liver has exactly the same fighting spirit that she has herself) but the PH will be what causes her complications or sends her to transplant. Nothing at all to back that up, so depending on what happens in the future that feeling will either be proven to be an incredible case of mum's intuition, or more likely a ridiculous paranoia. I really want it to be debunked for at least the immediate future.

Clinic letter and full list of bloods

"Height: 99.1 cm (91st centile)
Weight 15.0 kg (75th centile)

It was lovely to see Hannah in the outpatient clinic on 10 July 2007. She is full of life and energy and she looks extraordinarily well and is clearly making excellent physical and developmental progress.

Her ultrasound has shown a significant degree of splenomegaly so we discussed surveillance endoscopy. I will arrange an admission for this.

We also discussed what to do if she should have oesophageal varices and I will give the parents some information on a clinical trial of prophylactic banding.

In the normal course of things I would try and stop her Ursodeoxycholic Acid but in view of the itch I think it is reasonable to continue with this.

Investigations:

Haemoglobin = 11.9
White count = 5.7
Neutrophils = 1.7
Platelets = 263
PT = 11 secs
APTT = 35 secs
Fibrinogen = 2.1
Sodium = 139
Potassium = 4.0
Urea = 3.6
Creatinine = 40
Calcium = 2.62
Phosphate = 1.60
Magnesium = 0.84
Bilirubin = 5
Unconjugated bilirubin = 5
Alk. Phos. = 1057
ALT = 36
AST = 56
Gamma GT = 57
Albumin = 40
Total Protein = 70

She will be admitted on 22 August as a day case for endoscopy and will be reviewed here in one year's time or sooner if necessary."

More on endoscopy

I feel like I know as much as it's possible for me to know about endoscopy, portal hypertension, varices and banding.

The most important thing that I have learned is that there is no real way to predict which patients are at risk of developing varices. The only definitive way to find out is by endoscopy. The clinical signs of portal hypertension do not always correlate with the risk of dangerous varices.

Something else I have discovered is that while collateral circulation can develop almost anywhere in the gastrointestinal system, the only varices which are at risk of spontaneous rupture and massive haemmorhage are the ones which develop in the oesophagus. So it seems to just depend on whereabouts the varices happen to develop as to whether a particular patient might be at risk of bleeding. Patients with portal hypertension will almost inevitably develop some collateral circulation, but it might be that is in a 'safe' place.

So what that means for Hannah is that although she does not have many clinical signs of portal hypertension, the fact she has some means that she has probably developed some collateral circulation. It all depends on where that blood is being diverted to as to whether she is at risk of developing varices that will bleed.

Although I trust the recommendations of Hannah's doctor, I also like to think things through for myself and work out how the doctor arrived at that conclusion. That process helps me to ask any relevant questions and clear up what I don't understand beforehand rather than being faced with having to make a quick decision on something without knowing much about it. I trusted the opinion that Hannah has a small risk of dangerous varices, then found out why that is for myself in my own time. It has also reassured me that there is more to this than just my own peace of mind, which was one of my inital doubts.

If Hannah does have those varices, then I feel I want at least the chance of having them treated, even if it is only 50:50. They don't know yet that it's the best thing for children, but they do know it is the best option in adults, so it is not a complete unknown quantity. So we are probably going to agree to take part in the study if Hannah is eligible. If we qualify but fall into the no treatment group, we will be able to set up a plan in the event of a bleed, and the information we provide will help to decide what is the best treatment for Hannah and other children like her in the future.

I have to admit I am feeling pretty scared about this. The chance of Hannah having dangerous varices is less than the chance of her not, and I am doing my very best to remain optimistic and believe we will be in the majority, but when you already have been hit with a 1 in 15000 disease which is the one everyone hopes it isn't, you know that the bad shit can and does happen to you (as indeed it does to everyone).

So I'm frightened. Frightened that Hannah will have those horrible varices, and we will move into a new phase of our life. One much more medically intensive than we have been used to to undergo an as yet unproven treatment, or one where a life threatening haemorrhage is is a real possibility.

We have been very lucky, and very blessed. We have watched the tiny sick yellow baby become a distant memory and Hannah beat the odds in every way. Around 50% of babies born with BA need a transplant in the first two years of life. Around 60% have one or more episode of cholangitis in the first couple of year post Kasai. Many struggle with weight gain and sometimes development issues. Hannah has not had any of those complications so far. We've been more than lucky, and can hope and pray and imagine it will continue, but can never assume it.

In a discussion with her doctor about Hannah's prognosis last year, he told me that she stood a very good chance of reaching age 10 without needing a transplant, in the region of 80%. The biggest obstacle to overcome to reach that is portal hypertension. So what they find or don't find in this endoscopy will affect that outlook to some degree. I hope and pray that they will find absolutely zilch and tell us she doesn't need another endoscopy for 20 years, but until we have got through it I can't help but worry. I really do like my version of a normal life, and I'm pretty sure Hannah does too.

And, of course I am still anxious about that stupid Alk Phos. I really hope they run that as part of the pre-scope bloods and it has come down and I can stop stressing about it. She really has been growing a lot and it is sure to be down to that but there is a little flashing sign in my head saying 'bile duct damage' about a thousand times a day. Silly woman that I am.

I'm not looking forward to the general anaesthetic either. The last one was for the Kasai. I remember every moment as if it was yesterday and I think those memories will be hard to suppress. In the future a general will not be so closely linked in my mind to the Kasai, but for this time it is.

This just shows how we have been so blessed to have such a non medical life over the past two and a half years. This is all relatively minor compared to what we went through with the Kasai and what other liver kids deal with all the time, but the fact it is something major for me is a good thing. We are not so accustomed to medical procedures under anaesthetic that we see them as routine and thank goodness we are only there for a day instead of three months.

I am trusting in God's plan for Hannah, that whatever it may be we will find peace with it.

Pants!

I am extremely happy to announce that Hannah has been in pants during the day for a whole week! She has done really well, with only a few puddles and most times they were on the bathroom floor so the intention was there! We have coped with Asda, church, and other outings without mishap so far, so I am hoping this is it.

I think the joy of nappyless daytimes is probably worthy of a post on my own blog, after almost five years without a break!

I'm not going to spoil the ecstatic theme of this post by talking medical stuff, so that will have to wait.

Endoscopy date - already!

The letter came this morning and it is booked for 22nd August. I somehow didn't expect it to be quite so SOON. Crap.

I've been doing some homework and thinking a lot since my post weighing it up. More soon.

Blood test results

The news is good! Almost everything was normal or close to it.

Total bilirubin 5 (normal). This measure whether she is getting jaundiced.

ALT 36 (normal)
AST 56 (normal/slightly elevated)
GGT 57 (not sure on the definitive range for this one...some give this value as normal, others as slightly elevated). These three are all markers of liver cell death.

Albumin 40 (normal). This is produced in the liver and measures how well the liver is functioning.

PT 11 (normal). Measures how well blood is clotting.

Platelets 263 (normal). Low values cause easy bruising and bleeding.

Haemoglobin 11.9 (normal). A low value indicated anaemia.

White Cell Count 5.7 (normal). Low value could be due to liver disease, high value commonly due to infection.

The only one that was concerning was her Alk Phos at 1057. This can indicate bile duct blockage or bone damage. That value is pretty high for Hannah - previously it has been 403 (Jan 07), 274 (Oct 06), 275 (May 06). I know (and the nurse reminded me) that it can be elevated in children due to growth, and Hannah has been doing plenty of that lately! The nurse also told me that Alk Phos can be elevated with vitamin deficiency, particularly Vit D. Her vitamin levels are not back yet so we will have to wait and see with that one.

Endoscopy and study - thoughts so far

I have been doing a great deal of thinking on the subject of the endoscopy and study. No conclusions yet, but lots of random thoughts that need organising.

An endoscopy is being recommended for Hannah because she has portal hypertension. Portal hypertension is elevated blood pressure in the portal vein which carries blood between the liver and the digestive system. In Hannah's case this is caused by restricted blood flow through the liver because it is damaged. Varices form when the blood tries to find other routes back to the heart. It travels through other veins and these can become overloaded with blood meaning they can burst. A variceal bleed is a life threatening medical emergency. Hannah has been diagnosed with portal hypertension because her liver and spleen are both enlarged. At this stage it is considered to be mild, based on how much her spleen is enlarged.

The thought of a bleed from portal hypertension has been my number one fear since Hannah was diagnosed. A decline towards transplant does not happen overnight, and there would be time to take stock and adjust. The thought of finding Hannah covered in her own blood is the stuff of nightmares. I wish someone had told me in the early days that it is uncommon for varices to develop in the first 18 months of life if the Kasai is working and the liver is functioning. My anxiety levels would have at least halved.

My mind has gone to many dark places in the last 2 years or so on the subject of varices and bleeding. For children with BA and successful Kasai a major bleed can come completely out of the blue. It's often made me wish I can see what was going on inside, to know whether I can put that fear to rest for now. I would have thought I would have jumped at the chance of the endoscopy to find out for sure. Now I am having some doubts.

One of the thoughts I am having is that I don't want Hannah to go through an invasive medical procedure solely for my peace (or anxiety!) of mind. While her doctor is recommending it, the ultimate decision as to whether to go ahead lies with us. I really need to think through the possible outcomes of the endoscopy and whether having it done would be beneficial to Hannah.

If treating any risky varices was the point of the endoscopy, I would have no doubts whatsoever. The problem I am having is that a) if Hannah is not part of the study any varices would not be treated anyway b) if she is part of the study she only stands a 50% chance of being selected for treatment. Perhaps this would be a good point to go into the current protocols and the details of the study.

Currently here in the UK children with varices are not usually treated unless they have a bleed. There are some exceptions to this (such as those based long distances from the liver centre). The treatment is to put a rubber band around the varices which is done by endoscopy. There are drugs to treat portal hypertension but they tend not to work so well in children as in adults.

It has already been established through trials that in adults it is desirable to treat varices before a bleed. At the moment it is unclear whether the same is true for children. This is what the study is seeking to establish.

The way the study will work is that when children are recommended for routine endoscopy they will be invited to take part. To ensure there is no bias the decision to take part is made before the routine endoscopy is carried out. Children are eligible to take part in the study if they are found to have large varices which are at risk of bleeding. They are then divided randomly into two groups; those who will have banding treatment and those who will not. For those who have the treatment, the first banding will be carried out immediately, and further banding will take place until the varices are all gone. There will then be further follow up and banding if necessary for the rest of the two years of the study. The other group will not have any varices banded unless they have a bleed. They will also be followed for two years. One of the things I need to know is what is the plan after the two years are up? If that is not included in the information pack from the hospital then I will definitely ask.

There are so many different scenarios to consider. In some of them the endoscopy seems a no-brainer, in others it seems pointless.

To start with, I am finding it hard to justify going through with if we are not going to agree to be involved in the study. I see two end results - the first, and most likely, being that she does not have any large varices, in which case the endoscopy has served no purpose other than to give peace of mind to the adults involved in her care (and of course me!) The second would be that she was found to have large varices at risk of bleeding. The current protocol means the banding procedure would not be available, at least in the short term, so that would mean spending the next however long in a state of perpetual anxiety about a bleed. I suppose there are some benefits to having knowledge of what is going on, whether or not it is going to be acted on, but that needs to be weighed up against putting Hannah through an invasive procedure.

If we agree to allow Hannah to take part in the study, then there are three end results. Again the most likely is that she is found not to have large varices, and nothing much has been gained apart from peace of mind (not that I am understating how valuable that can be, just weighing it up). If she does have threatening varices, then there is a 50/50 chance that she will not receive any treatment, so again we are back to the major bleed anxiety situation. If she does get picked for the treatment group, then it involves a lot of endoscopies and a medical way of life that we have thankfully become unaccustomed to.

Then, on the other hand, there is the big part of me that says I would move heaven and earth to prevent any possibility of Hannah having a bleed. If that involves some disruption and taking some chances, well, maybe it is worth it. If I were to do nothing, and she had a major bleed, would I forgive myself? I need to do a lot of thinking and praying about this, and Andy and I need to spend some time in discussion.

I know an endoscopy is, when all is said and done, a minor procedure. But I know every parent out there would agree with me in saying that putting your child through any medical procedure is a decision not to be taken lightly.

Birmingham - the news so far

We had a productive and interesting visit to Birmingham yesterday. Dr McKiernan is very pleased with Hannah's growth and development, and her energy levels. She now weighs 15kg (33 lb) and is 99 cm tall! Nothing was flagged up from her abdominal exam, although he said he couldn't be sure of its accuracy as Hannah was so tickly!

We had her bloods done there - the most comprehensive panel for a long time - so no results on those yet. I can either wait several weeks for the clinic letter to come in the post, or I can phone Liver Direct and get the results from there in a day or so. Guess which option I am choosing........expect an update on those very soon.

I didn't get chance to ask any of my questions about possible worsening of portal hypertension. Dr McKiernan threw me for a loop before I had chance by saying he is keen to do an endoscopy to check for varices in the next few months. Apparently age 3-4 is the most common time for varices to develop. I'm still a bit in shock from this as although I knew that a scope was likely in the future, I just didn't think it would be quite this soon. I have quite a few mixed feelings about this. Although an endoscopy is routine it is still an invasive procedure and requires a general anaesthetic in children. If the endoscopy shows large varices, Hannah will be eligible to take part in a European study on prophylactic treatment of varices. We need to make the decision BEFORE the initial procedure. More on this later.

Working through the worry

With Hannah's yearly Birmingham check up coming up tomorrow morning the paranoia is cranking up several notches.

Will her bloods be normal? That is always the first worry. Last time her enzymes which indicate liver cell death were higher than the previous result. I hope that's because she was unwell, and that they are the same or lower than then, putting them back into normal range. The enzymes don't tell us how well her liver is working, but the way I see it the lower they are the happier her liver is. Previously the tests which show how well her liver is working (albumin, bilirubin) have been perfectly normal and there's no evidence they will be otherwise this time. If there was a problem with those she would have noticable symptoms - fluid in her abdomen (ascites) or jaundice. Those are the really important ones and along with clotting factors are the ones where abnormal results would indicate we would be thinking about transplant.

The next thing to worry about is whether there is any indication that her portal hypertension has worsened. This would be the case if her spleen is palpable or if her platelets are low. If those are both OK then we should be good to go till next year before she has an ultrasound and possibly endoscopy. If there is an indication it has worsened (I've now also convinced myself she has spider veins on her face, hoping this will be debunked) then those may take place this summer.

Really, the main worry is whether something will happen this visit to detract from our 'normal' life. Sometimes I feel like we have always got the lucky hand when it comes to liver disease and that one day we will be dealt a really shitty one to make up for it. Like our lion has spent so much time asleep that when he wakes up he is going to be full of energy and ready for a fight. Each time we go for a check up and they are so pleased with Hannah's progress I am walking on air, but at the same time feel like I was given a get out of jail free card. When the next appointment is due I can't help but wonder if one day they might all be used up.

So hopefully this time tomorrow I will have an update that says 'stable'. I've opted to have the bloods done there this time so will have to wait another couple of days for those.

Date through for Birmingham clinic

The letter came through today for Hannah's annual check up at Birmingham. It is the morning of Tuesday 10th July. She is not scheduled for an ultrasound or anything, but she is due for bloods. I am going to get them done there which means we won't have them on the day, but I'd rather that as I want to make sure her vitamins and the bile acid test get done. I can just imagine the fun (!) of trying to sort out getting those tests done round here, and I'd prefer for all tests to be done at once.

I hope we get to see Dr McKiernan as based on previous experience I will learn an awful lot more than if we see a registrar. I have a few little niggles I want to ask about. She seems to get tired more easily than she used to, but I don't know if that might be 'normal' rather than 'liver' as she is starting to grow out of her daytime naps. I also think she is starting to get some small spider veins on her face, and I want to ask if there is any plan if her labs this time have trended upwards again (there was a very slight upwards trend on the last lot but they were done because she was unwell so that could be why).

Well, with 5 weeks to go it looks like I better start work on my lists of questions. When we only go there once a year and the local checkups involve the doctor asking me how she is doing, then I make the most of it! I will have two - a registrar one and a Dr McKiernan one!

Quick update

There isn't too much to report. Hannah is still enjoying pre-school. Health wise she has not had any appointments or check ups, although she wasn't well with a virus at the beginning of last week and since then has been tired and extra itchy. Yesterday I noticed the skin is peeling off all her fingertips. I haven't decided yet if it is something I need to worry about or not.

Hannah will be three in August and I am wondering if I will ever have the strength to get her dummy off her. She has a thousand times as much willpower as me. She is not allowed to take it out of the house but it is a constant fixture in her mouth when she is at home. When we get back from our holiday in June I will have to tackle that and give her a bit more of a push towards potty training.

Hannah is due for her yearly check up in Birmingham in July. She will have bloods done and I think her vitamin levels and bile acids checked.

After a long battle, I have finally won disability living allowance care component for Hannah. This has been awarded on the ground of monitoring her medical condition for life threatening changes and also the treatments she needs for her itching.

I must make an effort to add more pictures of Hannah to this blog, and to finish off her medical history.

Nursery Place and the scar

We had the letter in the post this morning telling us that Hannah has been accepted for a morning place at nursery for next September - hurrah! Even better, so have her friends Caitlin (why does she have a friend with the same name as her sister?), Alfie and Aoife.

Hannah has been enjoying pre-school. Every time she goes she tells me she has "made lots of new friends" so she is obviously a social butterfly!

Today Hannah noticed her scar for the first time - she has been completely oblivious to it up until now. She was complaining of an itchy tummy and suddenly spotted it as we were rubbing her Vitamin E cream in. "What's that?" she asked. "Is it a band?"

"No, that's your scar." I said. "The doctors had to make a hole in your tummy when you were a baby to fix it."

"Why did the doctors have to fix my tummy?"

"Because it didn't work properly"

"Why didn't it work properly?"

I struggled with putting that one in her terms. Eventually I settled with

"Because you were yellow"

"But why did they have to fix it?"

"Because otherwise you would have got more and more poorly. That's why the doctors check your tummy and your arm [Hannah calls a blood test 'checking her arm'], to make sure you are not getting poorly again"

"I know THAT!"

End of conversation for now. I knew I would have to deal with questions about this one day, but hoped I could put it off as long as possible. It's only going to get harder as she gets older and more articulate. I've always tried to be very honest with my kids, particularly about things which are unpleasant. Not brutal, but honest. If they are getting a vaccination, I tell them. Not days in advance, so they can work themselves into a frenzy, but a couple of hours, so they have time to discuss the forthcoming unpleasant event and prepare themselves a little. Far preferable in my book to someone grabbing them and sticking a needle in them without warning. I don't tell them it won't hurt either. I tell them it will hurt a little bit, and they might cry, but it will be over quickly and then they can have a sweet. So when Hannah starts to ask more about her illness, I will have answer her honestly within the bounds of her age. And Caitlin too, and that breaks my heart just as much. The girls fight a great deal but also have a wonderful bond and love each other very openly and very dearly.

Hannah's grandad (my dad)is in hospital at the moment with an undiagnosed heart problem. Also my dear friend Amanda is undergoing life saving surgery today. And some of our other friends at Liver Families are also having very difficult times at the moment with children in serious or critical condition. They are all very much at the front of my mind today.

(Perhaps the last paragraph is an indication that I am ready to start back on my own blog..)