Katie has kindly shared with us her experience of finding out one of her newborn twins had biliary atresia ,and the overall effect on family life . Now we hear how life has changed again since Rosie has started school.
Rosie had attended pre-school for a year and enjoyed it so much that neither she, nor her twin sister Daisy wanted to go into the reception class! But I knew that Rosie was more than ready to start school, she’s a strong character and is keen to learn. It also helped that she and Daisy were put into the same class. Luckily my instincts were proved correct. She loves going into school every morning and is always keen to tell me about her day. Currently, the girls and their older brother, Marley are all at the same school which does make life easier. It’s a large primary but they all enjoy it which is the important thing.
Health wise, Rosie has not been admitted to hospital for a year now which is the longest spell we’ve ever had. I know it’s something she thinks about however as she talks about hospital most days and often gets upset when we take her temperature. She had a bit of a setback recently with her spleen enlarging, which is something which could bring complications, so we definitely don’t take anything for granted. Rosie will remain on prophylactic antibiotics until she is two years clear of a hospital stay, something which used to seem near impossible, but now we are more hopeful.
Naturally we do all we can to minimise the impact of Rosie’s biliary atresia on her and the rest of the family. Daisy doesn’t say much at all about it, but we notice that if they are ever apart due to appointments or sickness, they clearly miss each other and are always happy to be reunited. Big brother, Marley, who is seven, did struggle a few months ago with understanding Rosie’s condition and we’ve had the sibling toolkit from Children’s Liver Disease Foundation which has been great to use. This is certainly something we shall also request for Daisy if it looks like she’s showing signs of anxiety too.
We try not to put too much focus on Rosie’s temperature as this can cause upset for all three children if it stops us doing certain activities (as happened earlier this year when Rosie was admitted to hospital on holiday and it upset them all).
Our friends and family are very considerate about being around us if they are poorly themselves and although sometimes this can upset the children if they feel they are missing out, we need to keep as safe as possible and reduce any unnecessary hospital stays.
Rosie’s life is certainly not all about biliary atresia though. She’s a positive, full of life, bossy little lady who doesn’t let anything get in her way! As well as excelling at school, she loves gymnastics club and swimming. She thoroughly enjoyed last year’s holiday to Morocco, and we managed to get up to Northumberland for a family Christmas which was just magical!
Rosie’s dad, Alex, recently had a tattoo done showing her Kasai scar. Rosie loves it and tells her dad that she knows it’s there, so she doesn’t feel lonely having a scar!
Using Children’s Liver Disease Foundation has always been a lifeline for us, whenever I am feeling unsure or just need a bit of support. I know the support is there and for that I am eternally grateful.
