Still here!

Yet again far too long since I updated and I think even my small band of loyal readers are starting to give up on me!

As I said in my last proper post, August was a very busy month. The girls had wonderful fun with all their birthday celebrations. The main event of course was the Jungle Junction party which went very well indeed. I managed to get there in plenty of time without getting stressed which as anyone who knows me will agree is a pretty major achievement. The food I prepared all went down well and there was enough for everyone without too much left over. The only nearly catastrophe was that I made the mistake of thinking that Jungle Junction supplied the squash...they don't, if you are doing your own food you have to bring your own squash and they supply the jugs for you to make it up in. Thankfully I was saved by the early arrival of my friend Mandy who nipped down the road to Sainsbury's for supplies. The girls had a wonderful time, but sadly due to organising the food and drinks for the children I didn't get chance to take more than a handful of photos. On their actual birthdays we had family round for a cuppa and birthday cake - so in total they had three cakes between them! Lucky girls (and lucky me, I managed to get my fair share...)

Hannah's endoscopy went very well indeed. I won't go into too much detail as I know it's all on her blog, but the main thing was she has no varices (still having trouble getting that to sink in) and she was a star for the whole day.

It was lovely to meet with Danielle, Liz, Maribel, Sam and their families for the Hugs and Hope day on the 19th of August. Sadly it bucketed it down for the whole day and as we had picked an outside activity it really spoiled our plans. The kids didn't mind splashing in the puddles though and we got to have a good natter together.

Here is the montage of photos I made from the day:



September started with Caitlin going back to school on the 5th. She was very excited to go back; it is great that she enjoys school so much. Being not terribly bright I had booked Hannah's home visit for nursery at 11 am that day. This did not exactly give me much 'one child instead of two children who mostly want to kill each other time' to make the house look presentable. Amazingly I managed to make the living room look like part of a respectable person's home, although the hidden bits of the house were very scary and I prayed that they wouldn't need the loo! It was a good job too...because the headmistress arrived with Hannah's teacher!

The following week we enjoyed a visit from Elly, Arthur, and Sylvan. Hannah has finally managed to work out that Sylvan is not called Shiny, which is progress. Arthur was perfectly happy as long as he could watch Thomas the Tank Engine (note to Elly: We now have a new video player so there is the potential for Arthur to watch more than one episode of Thomas next time he comes!)

The next highlight was Hannah starting nursery on the 26th of September...here she is....



...having a great time, and thankfully that has continued. In fact I have to chase her into the classroom for a goodbye kiss!

The 6th of October was the CLDF conference. This is the third time we have been and as usual it was an excellent day, being extremely interesting and informative. It was also the day of my big moment...the talk I had been asked to do. I worked really hard on it and also had some invaluable help from Andy. It was all worth it; not only did I manage not to cock it up but I have had some wonderful positive feedback about it.

So....*breathes*....I think that is our major events of the last three months caught up with....

Happy Birthday Hannah!

My miracle girl is 3 today! Have a wonderful day Hannah, I love you so much!

Lots of love and kisses from Mummy xxxxxxx

Happy Birthday Caitlin!

My big girl is 5 years old today! I am so proud of her.

Have a wonderful day sweetheart, I love you so much, love and kisses from Mummy xxxxxxxxxx

The usual ups and downs

Two weeks in and we are surviving the summer holiday and I am still sane (although of course everything is relative!)

We have mostly been chilling out doing things at home, because the next three weeks are going to be hectic. Puzzles have been very popular and Hannah has a new addiction for sew and lace cards. We had a lovely day at my friend Rachel's house on Tuesday. She invited us and some other friends over for the day. The kids played together beautifully (mainly!) and we relaxed in glorious sunshine in the garden.

The girls have made their own 'gardens' in planters which was a particularly messy experience. Each garden has a pond, a path, and some wierd totem pole things they made out of lolly sticks. Oh, and a few plants! As we have finally had a glimmer of summer like weather this week I decided to turn the sand pit into a paddling pool. There were a couple of good reasons for this; we have no sand, and it took about a thousandth of the time it would have taken to clean, inflate and fill the actual paddling pool.

I have been asked to speak at this year's CLDF conference about caring for a child with chronic liver disease! I feel very nervous about this and really hope I can do a good job. The conference is in 2 months so there is plenty of time to be terrified....sorry, I mean to prepare.

I have been doing the happy nappy dance for the last couple of weeks! Five years ago I was a week away from becoming a mum. I really do not want to think about how many hours of my life since then have been devoted to nappies. At last, there is light at the end of the tunnel. We are nappy free during the day! I feel like a new woman!

There is so much going on during the next few weeks that my head is spinning. This week we have William's birthday on Monday, then I need to get organised and get Caitlin some presents before Saturday! Then there is the girl's party on the 17th, Hugs and Hope day on the 19th, Hannah's bloods at Birmingham on the 21st, Hannah's endoscopy on the 22nd, Ethan's party on the 25th, and Hannah's birthday on the 26th. I can see the rest of the 'holiday' disappearing very rapidly.

I've been feeling quite down the last couple of days. I am scared about Hannah's endoscopy although I am trying not to be, and I just have an overwhelming desire to talk things through with Mum. I remember how when Hannah was ill as a baby I would be ringing her from the hospital every couple of hours. She was like my anchor. There are so many good and bad things that I just need to share with her and now I can't.

I am also missing a friend who I am used to sharing a lot of stuff with. She has a huge amount going on in her life at the moment and isn't around as much as I am used to. Thankfully it's just a temporary situation.

Summer holidays are here!

The last couple of weeks seem to have been quite busy. Of course the first thing after my last post was Hannah's Birmingham appointment. I made some lengthy updates to Hannah's blog about it, but forgot to mention it here.

So, a quick summary...

Hannah's appointment went very well overall. The only thing which is a slight concern is her Alk Phos level has shot up from its normal level. This can be caused by bile duct damage (what we don't want!) or bone damage, which in the case of children can be because they are having a growth spurt. It seems likely that growth could be the cause with Hannah but we just have to wait and see if the result trends downwards over time.

The other news is that Hannah's doctor has decided it is time for her to have an endoscopy to check for varices. These are internal varicose veins which are at risk of bleeding. We have also been invited to participate in a study to see whether treating large varices before a bleed is better than waiting for a bleed before treatment. We will only be eligible to take part in the study if the endoscopy shows that Hannah has varices which are at risk of bleeding - obviously we hope that will not be the case. If she does qualify, she will be randomly assigned to either the treatment group or the no treatment group. We haven't made a final choice about whether or not to take part yet, but at the moment we think that we probably will.

I have also booked a birthday party for the girls at the Jungle Junction soft play area. Their birthdays are two weeks and one day apart so the party is (almost) in the middle. As you can imagine they are very excited even though there is still over three weeks to go.

We have enjoyed seeing my niece Lisa who is back home at the moment after a year in Gibraltar. The girls love spending time with her and she has taken them out to have fun a few times.

We had fun watching the Godiva Festival carnival parade the other weekend, thankfully with a rare appearance from the sun! The girls chose some revolting multi coloured ice lollys which of course turned a muddy brown as soon as they started eating them, coating their clothes with unmentionable looking stains. We didn't go and look around the stalls though; although it is a 'free festival' there are plenty of things the girls would want to do which do cost money...bouncy castles, trampolines, helium balloons, face painting....so instead we went to the playground after the parade, which they enjoyed just as much, and I enjoyed more!

The school year has finished and thankfully the girls have been into relaxing more than doing so far. This is good because it is giving me time to chill out for a few days too! I did plan to take them to the library yesterday but they decided they would rather just read some of the books at home and so we snuggled together on the sofa for a story session. It was perhaps a good job we didn't do anything too interesting as a shopping trip to Asda sent them both into a giddy whirl of excitement! They have played very happily at home this morning, then we went to Grandad's for lunch and they burned up lots of energy racing around his garden.

I'm sure there is more but a rare rainless day has me in a frantic washing frenzy, and the latest load has just finished.............