I have been trying to write this blog for months. So much has happened since my last Crohn's story it's hard to remember it all. Being in and out of the hospital hasn't helped along with the lack of sleep and catching up with work when I have finally got home has made it simply impossible.
I have been posting for my friends on Facebook to keep them updated when I have been in the hospital. Sharing my feelings on social media has been a bit of therapy for me, don't know why but it has helped.
Here are my posts and the dates I posted them to help explain what has been happening in order and what words of wisdom helped me stay positive. My daughter is currently in Birmingham's Children's hospital as we speak. We have been here for 2 weeks today.
25 November 2016
Skye had her meeting with her doctor today at Birmingham children's hospital. She went with her dad and they talked about new medication and future treatments. This was a lot to take in for a teenager, bless her. Going to get to bed early so I can take her out for a girlie treat day tom just me and her! Once I get my head around everything that was said today about Skye's Crohn's I will write part 3. Skye's doctor is sending a letter explaining everything that was discussed as it was far too much to take in and the doctor knew I couldn't make it.
Thanks to all my friends and family for your support and kindness.
4 January 2017
Been a tough day at the hospital today with my daughter Skye and I could cry! Zac did me this little note all by himself on Sunday, I've stuck it on the fridge door to help me feel more positive and when I want to cry I read this and it totally cheers me up. Will keep it forever!
7th Jan 2017
Someone I love needs a cure!
My daughter's stuck in the hospital again!
8th Jan 2017
Had to leave her in hospital last night. She is 13 so is in the adolescent ward and she wants to act all grown up and stay on her own. I really think it's down to the fact that if I slept over I would have had to sleep on a chair and as she is always putting everybody else before herself she was worried about me getting no sleep. Been awake since 4 am, eager to get in and see her.
Fingers crossed she's a lot better today and we get some answers. All the medication she is taking for her Crohn's disease is just making her worse. Off to see her in a moment and cheer her up bless her, is awful to see your kids suffer.
9 January 2017
Been a tough weekend!
My daughter still not any better with her Crohn's flare up.
Day of more tests MRI and ultrasound.
So grateful to all my friends and family for always being there for me.
To all the other people in the world suffering, hold on to hope for a better day!
10 January 2017
My beautiful princess is home from the hospital. She is a lot brighter than she was and can't wait to sleep in her own bed later. Scan has confirmed her Crohn's has spread and we are being positive that we will fight this and calm the flare up down!
So happy to have her home!
Thanks again for all your kind words.
27 January 2017
My little Crohn's Warrior has been practising her yoga 3 times a week for half an hour.
I am so proud of her as it often hurts a bit due to her Crohn's flare up but she still keeps going. On the days she does her yoga she sleeps much better at night and already she is improving. She is currently being home-schooled due to having no immune system due to taking very strong steroids. These steroids make her bones ache and when she was going to school she was constantly picking up stomach bugs. The stomach bugs trigger her flare ups making Skye extremely sick and loose even more weight. As she doesn't get to do any school sports this is a great way to keep her fit and flexible. I am gaining too as It makes me practise more and along with my two yoga classes a week I can see how more flexible and strong I am becoming by practising 5 times a week. It is also making me feel happier and less stressed.
Happy Yoga Friday everyone!
5 March 2017
Been a very tough week! My poor daughter is having such a hard time with her Crohn's Disease. I can't bare to hear her tears of pain much longer. She has had the results of her MRI scan and things aren't looking very good. She cannot take any more steroids and the medication she's on isn't keeping it away. We adore her so much and it is breaking our hearts to see her suffer in agony most days.
I wish this marijuana oil would hurry up and be legal in the UK, I can only find positive things to say about it as for last 3 years it has helped so many Crohn's sufferers lead a normal life.
When your child is in so much pain and so unhappy what would you do?
It's so important for her to develop and grow properly at her age and her medication is not helping.We are desperate and are thinking of moving to Colorado so she can use this oil without us getting into trouble.
If we move there we wouldn't be able to come back with her as she would have traces of the substance in her blood and until it's legalised for medical purposes in the UK we are faced with these consequences.
13 March 2017
Yoga is not about touching your toes, it is what you learn on the way down.
Been a tough weekend! Anybody who has a sick child or is a Crohn's sufferer will understand the pain and fear it causes. To see my angel suffer like this is taking its toll on me and I look to yoga for help managing my stress and worry.
When my daughter can eat, move and stop sleeping all day, she likes to practice some gentle yoga too. But this week she will have to take it easy as she's hardly been able to eat and spent Friday and Saturday in bed being sick and in agony.
As I have my son too it's so hard for us as a family and we take it in turns to get him out and about so he still enjoys his weekend. I find it hard to leave her when she's in pain but dad's great with her too and my son needs some time with me.
We got her out a bit yesterday as the sickness stopped and she managed to eat a little bit. But as you can imagine we can't go far because she has very little energy.
We are so desperate to see her well again, it is breaking our hearts.
18 March 2017