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!

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 :)

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.

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