Being thankful

A couple of days ago, my 13 year old daughter found out that a girl she had been friends with since they were both 6 had been told she had 4 weeks to live after her cancer had returned.  Just over 24 hours later Beth had tragically passed away. 

In Japanese culture, Sakura (cherry blossom) represents the transience of all things.  Like life, it is beautiful but fragile and fleeting.  So Carpe Diem.  Seize the day.  Make the most of every second and be thankful for all the wonderful things that bless your life.  Appreciate your loved ones.  They may drive us round the bend sometimes, but they're the only thing that really matters.

A Trip to the Beach

 The weather forecast for Wednesday was good, so we decided to get up at the crack of dawn and drive 2 1/2 hours to the beach.  We chose Bracelet Bay near Swansea in Wales, mainly for the name, but also because we've been to the Gower Peninsula before and it's beautiful, as well as being within a reasonable distance for getting there and back in a day.


 This was our first day out at the beach since the childrens' diagnoses, so we had to put quite a lot more thought into food than in previous years.  Knowing we couldn't just pop into a fast food shop on the way home, we took much more food, and left earlier so we could be home in time for tea.  The beloved DS ciabatta were packed, along with lots of gluten-free snacks and cakes.

 It was a beautiful day, the sun was shining the entire time we were at the beach, and some of us managed to burn, even wearing factor 30!  It was a very rocky beach, with only a little sand once the tide was out, but that meant that it was fairly quiet even though it was only a couple of miles outside of the city.  Even the grumpier members of the family (mentioning no names...) had cheered up by the afternoon, and admitted that they enjoyed themselves.

 We arrived home to a letter from Ruth's consultant.  Her blood tests results were all good news - she is no longer anaemic, she is not iron, folate or B12 deficient.  There is no sign of diabetes or thyroid problems, and most importantly her coeliac anti-bodies have gone right down, and are now 'equivocal'.  A great end to a lovely day.

When being polite makes you ill....

This is Ruth.  Sometimes she can be a bit of a moody teenager - but then what 13 year old isn't?  But she is a kind, thoughtful and polite girl, who always tries to consider the feelings of others.

Last year when she was 12, she was diagnosed with Coeliac Disease.  This was hard for her, but we were already used to the diet as Alex had been diagnosed earlier in the year and had been gluten-free for 3 months at that point, so it wasn't as much of an upheaval as it could have been.

Ruth is very eloquent, and usually very self-confident.  She often explains to her friends about Coeliac Disease, and is able to take responsibility for eating safely when she is out with friends, or invited to a party.

But recently there have been a couple of incidents where her politeness and her eagerness not to offend have led to her getting glutened.

In the first incident, her Science teacher knew she was Coeliac, and when she was giving out chocolate after using it in a demonstration, she got Ruth to check the packet to make sure it was safe.  The chocolate was fine, but the teacher cut up chocolate containing pieces of biscuit with the knife which she then used to cut up the gluten-free chocolate.  After the teacher had gone to the effort of checking the chocolate was safe for Ruth to eat, Ruth didn't want to offend her by not eating it.  So even though she knew that there was a risk of her being glutened, she ate the chocolate.  Fortunately it was only a small amount, and she doesn't react very strongly, but it did lead to a blocked toilet.  But any glutening incident is serious.  We talked about how important it is for her to put her health first and that if someone is offended by her telling them she's sorry she can't eat something because it would make her ill, then they probably aren't worth worrying about.

However, 2 weeks later it is the end of term and her form have a party as their teacher is leaving to work abroad.  There are 2 other Coeliacs in Ruth's form, and one of them brought in a gluten-free cake she had made for the 3 of them to share.  There was only one knife for them to use, and it was used to cut the regular gluten-filled cake first, before the gluten-free cake.  Ruth knew it could make her ill, but after her friend had gone to the effort of making the cake, she didn't want to upset her by not eating it.  So she had a slice of the cake (apparently it was very nice).  I was very surprised when she told me what had happened, as I would have thought that the other Coeliacs (both who were diagnosed when they were quite little so have been used to living with it for years) would know it wasn't ok to use the same knife.  Maybe Ruth felt that since they had been diagnosed a long time before her, she could follow their lead, as they would know whether it was ok.  By the time she got home she was grumpy and her stomach was gurgling.  This morning we had a blocked toilet again, this time so badly we had to call out the emergency plumber.

But obviously more worryingly, this is the 2nd time she has been glutened in a month.  Both times she knew it would probably happen, but ate the food anyway as she was too worried about hurting someone's feelings.  Before she was diagnosed, she was fairly asymptomatic so I'm not sure if she's convinced herself that she isn't doing herself any real damage.  She is very intelligent (she is starting Maths and 3 Science GCSEs in September, a year early), so it's not that she doesn't understand the mechanics of Coeliac Disease, I think that maybe she is in denial?

I'm hoping that this time the message has gone in and she really will try to put her health first.

Have any of you had a similar experience?  How do you deal with these kind of situations?  Is it something you just learn to deal with over time?

Any advice or help would be greatly appreciated :)

The End of an Era

 Today is Alex's last day of Primary School - where have the last 7 years gone?!  On Wednesday a special surprise was organised for a group of the Year 6 children - a ride in a stretch Hummer!  It was a lot of fun, but as you can see from the photos, rather hot and sweaty.  And VERY loud!  Glad I wasn't stuck in there with them, my ear drums wouldn't have coped.

This morning was a special leavers' assembly, which the children organised with the help of the teachers.  There wasn't a dry eye in the school hall by the end of the assembly.  Alex started crying after the sketch he performed, and hadn't stopped by the time I had gone home.  He was smiling, laughing and singing through the tears though.

One of the classroom assistants is also a photographer, and has been working with the children since they were in Year 1.  She had kept all the photos on her hard drive so that once the children reached Year 6 she could make a montage to show on the screen at the front of the hall.  Well you can imagine how emotional we all got, seeing the photos of them growing up into such amazing children. 

Primary school has been an interesting experience for Alex.  The photos from Year 1 showed an Alex that had disappeared for several years.  We think (looking back at how he was affected), that he developed Coelaic Disease when he was about 6.  So the first photos on the screen were a happy, smiley boy, small and slim but with round, rosy cheeks.  Then he started to get thinner and thinner, and more and more unhappy.  He struggled with school work, concentration, anger/frustration and depression as well as stomach aches from the age of 6 until he was diagnosed with coelaic disease last summer.

A year on from his diagnosis, and almost a year of living totally gluten free, and again we see the happy, confident boy who finds school work so much easier.  His sense of humour, empathy and intelligence are shining through again.  It's wonderful to see the real Alex able to shine through at last, not held back by the horrible medical condition that caused him so much pain.

Thank you to the teachers, especially Miss Parker, for being able to see his potential, and helping him to have the confidence to know he can do anything he puts his mind to. 

Now we look forward to a new future - healthy and happy.

The Great Gluten Free Recipe Challenge!

The lovely Caleigh over at glutenfreekblog set us a challenge - to cook a gluten free recipe where the main ingredient is orange.  As well as being gluten free, the recipe could also not include any dairy products, almonds, hazelnuts or chestnuts.  So quite a challenge for an unadventurous cook like me.

I spent a few days thinking about what I could make with oranges, as they're not an ingredient I tend to use very often.  I do however love lemons (as does my husband) and use then often.  That got me thinking - one of my favourite gluten free recipes is Lemon Drizzle Cake, so I wondered whether I could adapt the recipe to make an Orange Drizzle Cake.

The recipe I use for Lemon Drizzle Cake is one I've adapted over the past few months, but was originally based on this one from Tana Ramsey http://www.bbcgoodfood.com/recipes/4942/lemon-drizzle-cake  

The Orange Drizzle Cake came out surprisingly well, and was finished up within a day or two.  Although if pressed, I'd have to admit to preferring the lemon version, this makes a nice change.  I wasn't particularly adventurous this time round, I'll have to try to be more so in future challenges.

Thanks to Caleigh for organising the challenge, and I look forward to seeing what the other gluten free bloggers have come up with.

Orange Drizzle Cake
Ingredients
For cake:
200g cooking margarine (normally I use Stork, but as one of the rules was that it had to be dairy free, I used Pure Sunflower margarine)
200g Caster Sugar
3 eggs
Zest of 2 large oranges
200g Gluten free self-raising flour
For drizzle:
Juice of 2 large oranges
85g granulated/caster sugar

Method:

1. Heat oven to 180°C,160°C fan, Gas Mark 4.  Line and grease a loaf tin.

 2. In a large mixing bowl, beat together the margarine and sugar until creamy.

 3. Add the eggs one at a time, mixing thoroughly.

4. Sift in flour, then add the lemon zest and mix well.
5. Spoon the mixture into the loaf tine, and level with the back of a wet spoon.

6. Bake for 45 mins, then test to see if cake is cooked by inserting a cocktail stick into the centre - if it comes out clean, the cake is done.  If not, leave it to bake for a few more minutes then try again.
7. Remove cake from oven once cooked, but leave in tin to cool.
8. As soon as cake is removed from oven, heat the sugar and orange juice for the drizzle over a low heat until the sugar has dissolved into the juice.

9. Prick the warm cake (still in tin) all over with a cocktail stick.

 10. Pour the drizzle evenly over the cake, and leave in tin until completely cooled.

According to the original recipe, the cake will keep in an airtight container for 3-4 days or freeze for up to a month, but in my experience it won't be waiting around that long, and will be gobbled up in a day or so!

Birthday Parties

This week Ruth and Alex were invited to their first birthday parties since they were diagnosed with Coeliac Disease.  Obviously this makes things a whole lot more complicated.  Being vegetarian meant that it was a bit more difficult as it was, but this is a whole different league.

Fortunately I'm good friends with the mother of Alex's friend who's party he was invited to, so she knows a fair bit about Alex's needs as I've spent quite a lot of time speaking about it over the past year!  She and her son decided to make sure all the food at the sleepover was ok for Alex so he wouldn't feel left out, or have to ask if each thing was ok for him.  How good it is to have considerate friends.

We decided between us that the easiest thing would be for me to make some gluten free cupcakes and we sorted out the other snacks and drinks between us.  I was unsure how the cakes would go down - 10 and 11 year old boys aren't known for their tact or diplomacy!  

I made 12 plain sponge gluten-free cupcakes, marbled yellow and red food colouring through them to fit in with the Nerf gun theme, and decorated them with yellow icing, Dr Oetker Polka Dots and Haribo sweets.  Alex came home telling me the boys all loved the cakes, and the four of them wolfed down 3 each - that's about the highest praise you can get!

Ruth is now 13, and very independent.  I asked her whether she wanted me to phone the parents of her friend who's birthday it was, and she said no, that she had spoken to her friend herself.  She'd told her friend what she could and couldn't eat, and about cross-contamination, and her friend had made her a pizza using a DS pizza base.  I was very proud of her for dealing with it herself.  This is a skill which she will need more and more as she gets older, so it's good that she is comfortable doing this.

So all in all, these parties have been been a pretty successful.  I'll feel a lot less worried when they get invited to parties in the future.

Progress

It's been a long hard battle to find out what was wrong with Alex, and get him well again.  He started to struggle at school around the same time his health started deteriorating, around 4 years ago.  Now his health has recovered, he has finally been able to start catching up at school.

His latest report was a joy to behold - he has made the same amount of progress in the past 6 months, that he would normally be expected to make in a year.  He is now slightly above average for reading and literacy, and catching up fast in Maths.  He has been taken off the SEN (Special Educational Needs) register, and is now only 'M' (Being monitored).  His confidence in himself and his abilities continues to grow, and his teacher is so happy to see him making the progress that she knew he was capable of. 

All this time, it was Coeliac Disease that was holding him back in every aspect of his life.  Now we know and he is settled into his gluten-free diet, everything is turning around for him.  A year ago he was so ill and unhappy, it was heartbreaking to see.  Now he is happy, full of energy and doing well at school.  We couldn't be happier.

Teenager!!!!

On Valentine's Day Ruth was 13 - a teenager!  She has grown up so much the past few years, it is a joy to see her flourishing.  She's coped so well with her diagnosis with Coeliac Disease, and change in diet, we're so proud of her. 

We arranged her presents into 13 parcels to make the day even more special.  It was an interesting mix of presents this year - some very grown up ones (Skull Candy headphones, Death Note books and Blu-rays), but she still likes toys, so she also had My Little Ponies and a Monster High Doll - Cupid of course since she's a Valnetine's baby.

We had lunch in our favourite Itatlian restaurant, Puccinni's who do amazing Gluten-free pizza.  This was the first year that any of us could remember, that Alex wasn't ill on Ruth's birthday, which meant that all of us could relax and enjoy it so much more.

For her birthday cake, she chose gluten-free Red Velvet Cupcakes - 13 of them and heart shaped of course!  

Apparently it was the best birthday ever :)

My Little Sister's Wedding!

Austin (Best Man), Tom, Rosie and me (Maid of Honour).

It was soooo cold!

Ruth and Alex both looking gorgeous.

Me looking very happy :)

Alex and Great-Granddad

Rosie looking stunning in the sun

Tom, Rosie and me

On Saturday 11th February, my little sister Rosie and her finace Tom got married.  It was freezing but the sun was shining and the sky was blue.  Everything went perfectly, the bride was stunningly beautiful, the groom handsome.  A wonderful day :)

I'm still here!

I hope everyone had a lovely Christmas and New Year.  Apologies for the huge gap since my last blog post. 

I think I wrote last time about having been diagnosed with a UTI and feeling very poorly.  Well after 2 courses of anti-biotics I still had awful abdominal pains so I went back to see the Dr again.  He sent an armful of blood to test me for everything under the sun, but they all came back normal.  So he sent me for a CT scan.  That came back normal too.  So 8 weeks of horrible pain, and we still couldn't find the cause. 

Christmas and New Year came and went.  We spent them quietly, at home, which made it easier for me, as even dinner at my mother-in-law's house for a couple of hours wiped me out.  So I've been given anti-spasmodics (the wonderful Buscopan that so many of my friends swear by) to try for a week.  Keeping everything crossed they work, as the next step is a colonoscopy, and I'd really rather avoid that if possible!

As well as neglecting the blog, I've also been neglecting the camera, and only doing the bare minimum cooking-wise, but I'm feeling a bit brighter this week, so hoping to get back into the swing of things.  I'm not one for New Year's resolutions, but I do have a good feeling about this year :)