Tag / cah


Oodellally Golly What A Day

Isn’t it typical that two days after pouring my heart out about Elfie’s disorder she becomes ill? Will and Hux have both been afflicted with man flu this past week and after thinking Elfie and I had escaped it, she fell ill this morning. She woke me up crying at 6am and was lying on […]…


Illness, Baby Cuddles and Britney.

Whenever Elfie is ill I get the overwhelming feeling of “it’s not fair”. When she had a bug as a baby it was all whinging, taking blood sugars, constantly checking temperatures and days in hospital. Thankfully now she’s older, stronger and we know her condition inside-out we no longer need to do the dash to […]…


Elfie at 19 Months

It’s weird, looking at Elfie now you don’t see a baby anymore. You see a toddler, a mini-person. Especially when she’s dressed in the next size up of 18 months-2 years clothes which seem seem so much more geared towards making toddlers look like children rather than babies. Thank goodness for onesies which I will […]…


A Hellish 24 Hours

When Elfie is growing up I never, ever want her to consider herself different. Despite the medication and the doctor’s appointments she will always be normal. One hugely comforting thing I took from my last post about her is that it’s not just us in a difficult situation; every family has their quirks, their intricacies, their […]…

Elfie Pregnancy

Genetics and Pregnancy: What Would You Do?

A background on Elfie’s condition can be found here and a post I wrote when she was diagnosed is here.  We had some really good news from our genetic counsellor last week. The scientists in Frankfurt who have been analysing Elfie’s blood have managed to isolate and identify the changes in Elfie’s genes which leads to her condition, […]…


Life with Elfie as a Poorly Baby

I’ve been wanting to write about Elfie’s condition for a little while, to record what it’s like to live with a little one who has different needs to normal babies. Elfie was born with a very very rare genetic condition. She is about one in a very small number of people in the whole world […]…

Ill Elfie

Archived: Hospital Beds

I originally wrote this on 22nd October 2010, around the time Elfie was first diagnosed with her condition. It’s still hard for me to read; I feel a lot of guilt even though I logically know it wasn’t my fault she was so very poorly but the thought that we could have lost our little […]…