We are finally here, 6 months post transplant! It has been such a goal since January and we've made it relatively unscathed. It's hard to imagine where we were 6 months ago now, in some ways it feels like a lifetime ago, in other ways as though it was yesterday. It was a very scary place to be and I'm still coming to terms with it all if I'm being honest.
We have been quite lucky so far in that she is doing so well with no serious complications although transplant is not a cure, it is a treatment pathway and as it was the only option left for Erin, I'm so very grateful to the kind donor who gave us this chance. I think of them and their family often, we are hoping to write a letter to their family soon to let them know how much we are cherishing this gift.
Sometimes I feel like we are still living on the edge of a knife, it could all go wrong quite quickly and I find my anxiety is quite difficult to subdue at times but I won't let it stop us from enjoying this relative period of normality. A few things have cropped up recently that have sent us back to the 'phone the team for advice' or 'head to the hospital' quandry. As always this tends to happen at 11pm on a Friday. It is so so hard to know when we are being over reactive or worse, under reactive. I had a very sleepless night after a day of pale stools (all our liver friends will know that feeling) but thankfully we have put it down to the change from formula to whole milk. I'm so glad we have such a fantastic Liver nurse, Jenny, who is always there to guide us and reassure me when I'm imagining ascties or jaundice!
Erin has been ill again recently with a chest infection but is over the worst now, we were thrilled to have avoided bloods for the last 3 weeks and we are hoping to make it to 4 weeks!
At the moment Erin's favourite word is 'Hannah' so she shouts this all day. She can't say Poppy yet so she has renamed the naughty dog 'Eh eh eh' because that's what she thinks we call her. She is toddling around very happily now with some assistance and often insists on being on her feet rather as in her buggy. We have had a few nice family days out recently and are planning a week long holiday in Berwick after her next bloods on the 9th. I'm hoping she'll be able to get on the beach and even have a little paddle in the sea!
I've uploaded a few wee videos for those of you that have been asking for an Erin fix, enjoy!
Erin you're amazing, love you so much especially wee "crazy face" :-) Great video! What a difference in her, its fab to see her so full of life (& cheek.. so hard to decide where she gets that from tho)!!! happiley dancing away & always smiling after everything she's been thru. So sweet she's copying Hayley's moves... highland dancer/horse rider in the making!! well she's got the best teachers anyway. Enjoy your much deserved holiday, see you when your back miss you all, sending lots of love & big squeeshy cuddles xxx
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