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cah

Elfie

Oodellally Golly What A Day

February 6, 2013
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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 her bedroom floor. I scooped her up – poor thing was all rolling eyes and floppy limbs – and deposited her on Will’s side of…

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Elfie

CAH and Elfie: What It Is, How It Affects Us and Why It’s Making Me Run

February 4, 2013
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  I‘ve written before about Elfie’s health problems, but have never gone into specifics about what is wrong with her. At the time I thought I was doing it to keep a little privacy for us all. But really I think it was because it was too hard. It’s only now that Elfie is 2 and a half years old that I’ve begun to come to terms with her diagnosis and the emotional upheaval we went through when she was…

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Elfie

Illness, Baby Cuddles and Britney.

November 10, 2012

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 casualty but there are other reasons why a poorly Elfie pulls on the heart strings. She can speak, for one, and when she’s ill she…

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Elfie

Elfie at 19 Months

January 27, 2012
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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 be keeping her in forever – she’s always my baby in her onesie. Elfie is growing so fast and can now walk if you hold…

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Elfie

A Hellish 24 Hours

November 21, 2011
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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 differences. People have problems and issues but they just don’t get discussed, and that’s why it’s easy to feel isolated and alone. So thank you…

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Elfie Pregnancy

Genetics and Pregnancy: What Would You Do?

November 13, 2011
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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, and rather than her having one gene abnormaity, she has two. Which means that they are now going to be testing mine and Will’s blood…

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Elfie

Life with Elfie as a Poorly Baby

July 14, 2011
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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 who suffer with this: it’s so rare that there isn’t much research to go on so Googling (my usual saviour) didn’t help when she was…

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Elfie

Archived: Hospital Beds

April 12, 2011
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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 girl is unbearable. I write this in hospital, sitting by Elfie’s bedside, which is where I’ve been since 5pm on Tuesday. We have been so…

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