Last year we shared Katie’s story of coping with a biliary atresia diagnosis in one of her twin baby girls, whilst also coping with a toddler who needed his mum I’d advise anyone to ask for help – Childrens Liver Disease Foundation (childliverdisease.org). Now her twins are three, we’ve caught up with her again.
Unfortunately Rosie’s not been too great this year, she is back on her prophylactic antibiotics after some high liver function test results, we’ve had two long hospital stays this year and she is being monitored more closely now. Having said all that, she remains a brilliant little character.
I think the difference in hospital admissions now is that Rosie is becoming much more aware of what is happening to her and therefore becomes anxious. And Marley, who is now five, gets upset because I’m in the hospital with Rosie and he wants me at home. So it’s fair to say that hospital admissions now take their toll on the whole family.
There’s also financial strain to consider as both mine and my husband’s work don’t pay us after a certain amount of time off work.
So I am definitely planning to join CLDF’s get together with other families this month. I’m sure I can’t be the first mum to have been in this situation and it will be great to hear other people’s coping strategies. And if I’ve got any tips to pass onto other parents, I’d only be too pleased to!
I should stress that it’s not all negative. Rosie is making good progress in other aspectss and the times we are at home are amazing. This situation is teaching us all to live in the moment and to make life as good as we can for our children.
