Christmas comes but once a year...

This year, we will be having two. We promised the girls a Christmas when William came home from the hospital. We were separated for the real thing last year and the thought of our special Christmas together really kept us all going through those long weeks after William's illeostomy operation when we were battling to get his fluids and electrolytes balanced.

We had a Christmas party on Friday complete with mulled wine. People were so generous in briging cards and gifts for us so there was an exciting pile under the tree to tease the children. William enjoyed the pary food too - it all smelled good. He carefully arranged two cherry tomatos on the table and announced to all that he had 'made an illeostomy'. He had a fab time playing engines with one of his friends. This was great to see as he is not very good at sharing, especially engines, and can find playing with other children a bit overwhelming.

Today was our 'Christmas Day' and we had the works; a real Christmas tree, bucks fizz and smoked salmon for breakfast, dinner with all the trimmings and lots of chocolate and mince pies. Father Christmas very kindly returned to fill the stockings we left hanging on the fire place over night. There were plenty of Thomas goodies, including a fantastic track table made by Paul. The girls had a mix of pink fluff and glitter and make-up, chemistry sets and pens and pencils. The icing on the cake for them was a laptop...each. They are combined Christmas and Birthday presents (although their birthdays are a way off) but will help them keep up with their school work and friends when they have to stay at Mum and Dad's next time William is in hospital. It is too much for Dad to move his life into our house any more so, in future, Hope and Ellie will go to them in Stoke-on-Trent with educational support to keep up with school. The lap tops are brand new ones, designed for children and a bit different to traditional ones. They are called EEEPC and I'm sure Paul will blog more on the technical info. They are arriving on Tuesday so the girls had to settle with IOU notes today. The laptops have built in web cams so we hope we can use those to chat live when we are separated again.

It was a fab day and felt very authentic. It was strange to go to church for a Lent service rather than carols. There was no Christmas TV either - that was not so missed. The girls made up for both the lack of festive entertainment and religious input with a rendition of the Nativity story complete with songs. Thankfuly for them, my camera was lost under the goegraphical layers of wrapping paper at that point in the day.

Back to normal tomorrow for the first time in 3 1/2 months. The girls are back at school. William has 3 sessions at playschool, a hospital appointment and a driving lesson on the power chair. I have a training day to do with some Brompton Fountain Area Co-ordinators and need to get back on track with work in general. It is going to be a busy week and challenging to get into routines to manage everything along side William's new needs. I'm sure there will be plenty of fun and mishaps along the way to post on here.

A Grand Day Out

Aren't these just lovely pictures! We had a fantastic day out today. We started off watching the guards depart and arrive during the changing of the guard at Buckingham Palace. The Queen was in today so they all saluted her and the retiring life guards paraded to the front of the palace and saluted her with a bugle. I wonder if she actually watched these salutations anymore? We were guided through the action by an old chap who watches every single change - every other day in Winter and every day in the Summer. He was very helpful and spot on with his timings.

From the palace, we walked through Trafalgar Square (stopping at The National Gallery for a nappy change and bag empty), through Leicester Square and China Town to The Rainforest Cafe. We won a £35 meal voucher in a raffle at our community nurse team's family day back in September. The voucher went out of date last week but, when I explained the situation, the manager let us come anyway and in half term, when the orignal voucher wasn't valid. It is an amazing place. We certainly wouldn't have been going without the voucher as it is not at all cheap and the food is pretty standard. The atmosphere and effects were amazing. We had a pair of elephants watching over us as we ate and gorilla's and monkeys were near by. All the animals are animated. A star lit sky was above us and thunder rumbled from time to time. We were promised a good table and we certainly had one. The only problem I had was that there are no disabled facilities and the restaurant is down a steep flight of stairs. However, the staff bent over backwards to help us to get Wills down there. The children had a great time. Willam, as ever, enjoyed pushing engines around the table and smelling chips.

After lunch we revisited Trafalgar Square where the children ran around together. We went back into the gallery for another nappy and bag empty but this time stayed to look around a bit. At the suggestion of visiting it properly, Hope complained that galleries were boring and then complained that we weren's spending long enough at each painting once we were in. I promised her a return visit on our own so we can stop, stare and talk about the paintings together without her younger siblings chomping at the bit.

Hope, Ellie and I decorated our Christmas Tree whilst William played with his engines on the table. A perfect day really. William does struggle with pain while sitting for long periods. We have to build a bit of a jump around to help him drain every couple of hours into days out like this. It is a bit of a military operation really with all that needs to come with us and timing medicines, flushing TPN, bag emptying... All well worth it though, just look at those faces!

Home Sweet Home

 
 

We are home and William is finally enjoying his new garden. He can't wait to get out there as soon as he is off his TPN. I must admit to enjoying simple things like washing his sheets and Hope and Ellie's uniforms and haning them out in out lovely new garden on such a lovely sunny day (although rather cold!).

We are settling down and getting used to the practical challenges, such as William's illeostomy that drains huge amounts every time he moves, coughs, sneezes, laughs... We now know that his bowel really doesn't move at all. We also know that William secretes enormous amounts of fluid and salts though his gut. All this pools in his distended loops and floods out when he moves. This can result in some very messy situations if the bag fails. We have him attached to a urine drainage system over night and when he is in his chair but it is tricky when he is running around. He is very patient though, not least because he hates having his bag changed when it leaks. The illeostomy has certainly helped decompress his gut but he is still very distended and often uncomfortable. His x-rays still show obstruction - in William's case due to "pseudo-obstruction", meaning obstruction due to gut motility failure rather than a mechanical blockage. They are still awaiting some neurology tests to see if he is suitable for transplant assessment. It is highly likely we will find ourselves back at Birmingham for assessment at some stage. We also face some tricky decisions as to whether we opt for painful surgery to correct his feet deformities or decide that we let things be, resulting in increasing disability and potential wheelchair dependence. We will face all this step by step over the coming months but, for now, we are home and enjoying being together. We are getting festive too. For us, it is Christmas Day a week on Sunday!