Friday, November 23, 2012

Sometimes...

Sometimes liver disease is unbearable. Watching my own child suffer and watching her friends suffer is too much. That's it for today's post, it just had to be said.

Thursday, November 22, 2012

Medication and Routine

Bethany is struggling with her health at the moment. She's got to take all of these meds before school (there are 2 syringes off the side of the photo too). They start at 6.30am and go until 8.30am. One has to be taken at a time when she's had no food an hour before and after (hence starting at 6.30am). One has to be before food. Two have to be after or during food. One is an oral gel so goes after food ideally or it doesn't work as well. She is also supposed to have a physio session and foot treatment before school but its impossible. She's having 2 meds in school then several more, just as complicated in the evening. In the evening she also has a physio session and foot treatment which takes an hour. The poor girl is exhausted (as is her mum!!). I can't wait until some of them are finished and we are back to 3 meds a day. In the meantime, if you see me looking like a zombie you'll know why!

Oh yes, and when these meds are done we have other ones waiting in the queue that I can't physically fit into the routine right now because the day doesn't have enough hours. Forgot about that - something else to look forward to!

Tuesday, November 06, 2012

A Little Bit Of Magic...

I just wanted to share a photograph of something Bethany made for a special person :)

Sunday, November 04, 2012

Bonfire Night

We've had a busy day today. We've been to the cinema to watch Madagascar 3, which we all enjoyed and walked away singing one of the songs over and over. Da da da de la de da da circus...

After that we went to a fireworks display. It was a bit further than we would normally go - Elland - but it was to raise money for the Elland Round Table so we wanted to show our support. One of the down sides of having a child who needs to use a buggy when she's tired is that we have to get a space by the display before other people or she can't see a thing because she's too low down. When they lit the fire my dad pushed Bethany through to the front in her buggy and I put Eloise on my shoulders which was painful but she enjoyed it! For 10 minutes, when the fireworks display was in full swing, the girls forgot to complain about being cold and stood mesmerised by the magic. It helped that there were other families around us saying 'ooh' and 'ahh' :)

I hope you have enjoyed watching a firework display or you will do on 5th November. Keep safe and remember to keep your animals indoors.

Thursday, November 01, 2012

Jeannie

Here is our fabulous friend, Jeannie, who recently visited us. She lives in USA so it's always a big treat to see her. The girls absolutely adore her and begged to see her every night after school whilst she was staying near us :)

Upside Down Child

The photo today is brought to you by a hyper-mobile, upside down child!

Testing again!

Hallowe'en 2012

Monday, October 29, 2012

Painting :)

I've been painting some bookshelves for the girls room. It's taken me a long time because I suffer from chronic back pain and can only do a little at a time. So I'm very please they are finally done! All I need to do now is remove the poster that they are covering up and the job's done. Hurray!

I know the blog cuts off the right hand side of my photos but you should be able to see that there is one lilac one and one pink one.

Sunday, October 28, 2012

The British Transplant Games

Through the miracle of modern technology I am now able to update my blog through my mobile phone which means I might actually get round to blogging rather than just thinking about it!

Thank you to everyone who sponsored Bethany and Eloise for their sponsored silence. The girls manage to hit their target of £300 which helped contribute to their team (Leeds Children Transplant Team) funds and compete in the British Transplant Games. It was amazing to see the children and adults competing, all individual miracles coming together to make one special event. The girls enjoyed meeting up with friends that often they only get to see if Bethany is poorly and in hospital. It's a great way to celebrate their achievements and show the world how incredibly important organ donation is and what a difference it makes.

I've added a photo of Bethany competing in the 50m race. She also competed in the long jump, ball throw and obstacle course. Although she didn't win a medal she did a wonderful job of competing, especially as she still suffers with a lot of pain. I'm incredibly proud of Bethany and Eloise, moments like these just show how special they really are.

Sunday, August 12, 2012

The British Transplant Games

It's been a long time since I've updated here. I've missed my little blog, I loved that this was about the fun things in life even though it covered our stuggles with Bethany's health too. Life has taken over recently, there never seems enough time to update anymore.

Yet here I am, finally updating after so long, and it's to shamelessly plug Bethany's fundraiser to raise money for the British Transplant Games. Later this month Bethany will be competing in the British Transplant Games. Each family who attends tries to raise some funds towards the costs of competing, travel, hotel etc.

It's also a great way to raise awareness of organ donation and show that each person who receives an organ is a miracle. Without the person who said yes to organ donation our family would be forever incomplete. Not only did they save her from death, they gave her a chance at life, which is so much more.

So please, please, please, consider sponsoring Bethany and Eloise as they try to raise funds for their team to compete in the British Transplant Games. On Friday morning they are going to do a 5 hour sponsored silence. Anyone who knows them knows it will be almost impossible - especially for Eloise who is my little chatterbox! They will deserve every penny if they manage it :)

If you'd like to make a donation or read more about it, the link is http://bethanysbtg.org/

Once you have sponsored the girls please pass this link onto all of your friends. Not only do we want to raise as much money as possible, but we also want to raise as much awareness of organ donation as we can and what a positive way to do it. Once the British Transplant Games are over I will post some photos here to show how much fun we had competing and sharing with wonderful friends. Here is a photograph from 2 years ago when Bethany last competed in the British Transplant Games.
 

Saturday, August 20, 2011

Alcohol and Liver Disease

So many documentary programmes these days seem to deal with the subject of alcohol, alcoholics and abuse of alcohol. I know a lot of the families who have been through what we have been through are very angry that some people go through it by 'choice' when, in our case, it was genetic. I don't feel that way although I do understand why some people do.

But I just have to get it down somewhere, get it out of my system, that it's so incredibly frustrating to see. It doesn't make me angry, it makes me sad. I want to go to each and every person who is binge drinking and feel they have it under control, or those who are where they are just because of a boozy lifestyle, and show them what we went through. I want to show them what they are going to put their family through in the future, how those around them may suffer even more than the drinker because it's so unbearably painful to watch someone you love suffer so much. I want to show them photos of Bethany with tubes coming out of her body, explain how she will always have to take medication to keep her alive, how she has to be so careful of infection and has a restricted diet, how it's weakened her body and how the drugs she has to take can further weaken the body causing various complications.

I've never been a person to say, "You've only yourself to blame." Everyone travels their own path and no one knows what it's like. I remind myself that if the worst you've ever had is a cold then a cold feels just awful and that if my friends complain about something I feel is trivial then it's still important to them. I think some people have stronger personalities than others. I could be an alcoholic if I wasn't so pig headed! Everyone has a vice, my present one is crisps! But seriously, it's not the fact that they are drinking or that there could be blame that hurts, it's that I know what they are about to go through and that it can be avoided. Some of us didn't have that chance.

I often wish I had the chance to speak to people on adult liver units and explain what lies ahead if they dont stop. I appreciate that some people don't want to be helped and some desperately do but will never get to the stage of being free of alcohol. I appreciate that I might not make any difference at all. But I think, as with the organ donation awareness too, if I make a difference to one life then it's worth it. My heart aches for those who have either a transplant or a slow and painful death ahead of them due to alcohol. My heart aches for the families who are going to watch them die. My heart aches for all of those affected including the staff on the ward who live it every day. My heart aches for us because we didn't have a choice and that's why I wish I could take that away for someone else before it's too late.

Next time you joke about alcohol, about how funny it is that your liver hurts because you had such a good night or how you need to detox because you've drunk so much this week please remember that someone could be listening or reading who knows all too well the consequences and aches to show you that your joke isn't funny. It hurts. And please remember that you can't always fix a broken body, you don't want to find out too late that this also applies to you.

Monday, May 02, 2011

Having a Blast in Kendal and Lake Winderemere

We started our trip in Kendal, meeting up with friends and discovering Kendal Castle (ruins). Eloise had great fun running around the ruins, finding the dungeon, being the Queen of the Castle and playing in the playground. Bethany took it easy and found all of the seats, testing them out for size!














We headed to Gummers How in the Lake District and met up with some different friends. It's great having friends all over the country, wherever we go there are people to meet and we always get the best advice about local attractions! Gummers How is a huge hill overlooking Lake Windermere. It's very difficult for a child who gets aches and pains in her legs but we all eventually made it to the top and it was a wonderful vantage point. It felt like we were sitting on top of the world.




































On one of the days we went to Brockholes National Park. Eloise was her usual mad self. The girls went on a bungee trampoline. Eloise bounced as high as she could, trying to make shapes with her body and do mid-air tipple overs. Bethany was nervous but stayed on for the whole time and bounced a little higher before her time was up, I was a very proud Mummy watching her fight her nerves. The scenery was beautiful and we spent a full day happily exploring the grounds, playing in the adventure playground and lazing on the balcony eating ice cream. I think we would have gone back there for another day if we'd had more days available. I hope we get chance to go again.































And so endeth another adventure.