Advent awesomeness!

Check out the advent calendar I made for the children!  I am very pleased with it :) each envelope has a treat, a joke and an activity to do that day, tomorrow's is clear out your bedroom and give toys to the charity shop.  Paul is operating a one in one out policy on anything that crosses the doorstep so we had better be ruthless!

Loving the reflection of our hobbies in the mirror, my basket of mini books and two of Paul's pianos!

Can't wait until the morning to see them open the first one, just hope they are not too disappointed not to have a crap hello kitty calendar with cheap chocolate!!

Randomness!

I love it when I find these random photos on my phone or iPad!  The brilliant thing about digital cameras is that the children can take lots of pictures and I end up with some gems and some strange ones like this: 

Any ideas what it is?!

My month in numbers October

My month in numbers is the brainchild of Julie Kirk from notes on paper and a fun way to record our adventures. 

October was dominated by our visit to Southampton General, 10 days on the children's surgical ward as the next stage on our Hirschsprungs journey with William.  Some of our hospital numbers: 

Slept in beds 9, 3 and 14, moving towards the desk for critical care then back towards the door when we were ready to come home.  Just like the neonatal unit where we moved from room 4 to room 3 then room 1 as he got better.  2 operations, 1 planned with 8 hours in theatre,  3% morphine and the first epidural, whilst it is hard to take William to theatre it was much easier with the team of outstanding doctors we know so well, and they know us so I feel like I am leaving him in very good hands.  We had amazing care and when he was getting more pain instead of recovering he was quickly back into theatre for a second emergency procedure; 4 more hours in theatre, 5 hours in picu, 1 new stoma and 10cm less bowel small and large.  

Some nice bits too!  We met Rhoda again, once of the nurses who looked after William as a baby and it was so nice to see her and for her to see him all grown up!  She taught us so much when he was a baby.  We were visited by Dr Ding Dong, Dr wee wee and Dr bananas who told us lots of jokes "knock knock, who's there? Idunup. Idunup who?"  Honestly it is very funny!  William earned lots of stickers and got a toy from the prize cupboard, we made a pumpkin at the craft session, we made monsters and played the magic hat game a lot!  We watched alot of cbeebies and finding Nemo 5 times in the last 24 hours we were there!  But one of my favourite moments was Gerard being attacked by Darth Vader!  We heard him coming down the corridor and when I pushed Uncle G out to take a picture he ended up like this!

Back at home we started and finished the Sopranos season 6 which was in two parts.  Very good but a strange ending although I quite liked it.

5 nights at Sandy Balls, the balls in question turned out to be geographical feature!  We saw an amazing fire eater, did lots of playing, saw our friends and carved pumpkins.  The sweetest part of Halloween was the children dressing up in their costumes, they wanted to go to the halloween disco but when we got there it was too busy and noisy so they played twister in the dark and then we walked back to our lodge where they took it in turns to knock on the door and say trick or treat to get a sweet! 7.9 miles cycled on our family bike ride including a cake stop and a pub lunch!  And LOADS of ponies and donkeys seen en route :) 

40 Monarchs since William the conqueror, and we know them all thanks to the ruthless rulers song from Horrible Histories, the children can sing along perfectly "William William Henry Stephen Henry Richard John etc.

And now for the communal count : 

I received 20ish pieces of mail this month addressed to me, some junk mail, 4 Christmas mail order catalogues which I am browsing for inspiration for Christmas shopping just not quite yet!  The nicest was 3 parcels with get well presents for William.  A survive in hospital kit for me from my best friend including these fab cosy socks that I wore the day William was in theatre :) 

There was also a lovely guardian angel from William's godmother to watch over us.

A weather related fact!  One night in hospital the wind was really loud and whistled past the windows so much that it was more annoying than the occlusion alarms!  The Children's wards are on the top floor of the hospital and is the first tall building the weather hits coming in from the Solent.  It is always loud but this was something else and the next day we found out a tornado had hit the south coast and had hit us first :) 

Jam tomorrow!

Today we are mostly talking about food!  William would have liked a boiled egg for breakfast but had to settle for weetabix instead.  He is being really funny talking about all the things we are going to make when we get home.  Apparently we are going to make strawberry jam (have never made jam but we'll give it a go!) to put on 4 pieces of toast and some scones we will also be baking.  Madeleine and I can have jam on scones but not toast that is for William only!  

He is almost tube free so hopefully later we can go for a walk to the playroom.  All very exciting.

Yesterday he waved to the pets therapy dog at the door who waved back! It is so nice to hear him really laughing again, he is being very cheeky and chatty today. We have had lots of special treats during his stay, the radio lollipop people helped him make a cool door hanger with dinosaurs, the play specialists gave him some really cool monsters to make to encourage him to sit up in bed and today Dr Bing Bong, Dr Bananas and Dr Wee Wee came to visit us and told lots of silly jokes the punch line to most seemed to be poo poo which went down very well!

The change today is huge, there are no more iv lines, no more beeping monitors, thankfully he hasn't forgotten how to wee so now his catheter has gone we are using the loo brilliantly.  The new stoma is doing what it should so we are aiming to leave on Friday morning.  Keep everything crossed for us!!

What a difference 24 hours makes!  Next stop jam making!

Possibly, maybe, tentatively turning a corner?

W continues to make positive progress slowly but surely :)  lots of big steps today, the epidural is gone, the morphine is gone, he's had some milk and some toast and is sleeping through the bake off!

If all goes well he won't need to go back into theatre tomorrow to have a feeding line inserted and if he keeps eating and the new stoma works well we might (whispering!) be able to come home soon.

He is so much better as you can see: 

He is very skinny now and needs more rest and recuperation but I am hopeful :)

Next stop Sandy Balls!!

Calm after the storm

We've had a very quiet day today.  W came out of surgery at about 11 and spent a couple of hours in paediatric ICU before coming back to the ward.  His emergency procedure was a success and his small intestine has been untangled from the space it decided to move into!

Today he is very sleepy and grumpy, he is sore but so much better than he was yesterday.  He can move which he wasn't doing at all before and so I have spent a lovely day sitting next to him watching tv and periodically untangling the 6 lines coming out of his neck each time he rolls over.  He must be better because he called Paul poo poo!

Paul was here last night which was really nice and he has gone back to collect Maddie now.  Next emergency is to bring me enough clean clothes for another week :). 

After such a busy and worrying night it is nice that it is the weekend and the hospital is quiet.  This morning I walked to the car to swap dirty for clean clothes and saw these beautiful trees.  Sometimes you just need to stop and see the small good things that are all around us.

Nothing is ever straightforward!

One thing we have learnt on our Hirschsprungs journey with William is that nothing is straightforward or predictable!  He started to go downhill a little yesterday and was really unhappy today, after lots of monitoring he had an X-ray that showed he has an obstruction in his small intestine above his stoma, not connected to the previous surgery but it needs to be fixed so tonight he is in the emergency theatre having the blockage sorted and a new stoma formed.  All very worrying but at least it happened while we were here and had Mr S on hand to sort it out.  You have to have respect for someone who will stay on all evening to operate after he has been at work all week, we know everyone here will do their very best to get William well again quickly.  It is seriously impressive and makes me want to drag the Tories round to see amazing NHS service in action (after they have taught y9 for a day  of course!)

Anyway fingers crossed he will be out of theatre late tonight and on the mend over the weekend, hoping to get home mid / late next week so I need to email home a list of clean clothes I need!

Before all the drama started in William's room this happened in the corridor!

Bet that is the last time G agrees to call in to see me to bring hot chocolate on the way to a day out with Claire.  Attacked by Darth Vader then dragged by the wallet round Gunwharf Quays by his wife.  You have to feel sorry for him!! And photo bombed by Ariel the mermaid :)