Emma

For those of you who maybe don't know how we got to the rather daunting point of kidney transplant I thought I would do a quick catch up of Emma's life so far.....!

Emma was born on the 10th March 2001 at 32 weeks weighing a hefty 3lbs 8.5oz. I had pre-eclampsia from very early on and it was decided that an early delivery was needed.

Life pootled on quite normally until she was diagnosed with a growth disorder at 3. We were told she had 'metaphyseal chondrodysplasia'- basically a type of dwarfism. Although this was hard to accept at first we were reassured when we were told 'she would just be short with no major health issues to deal with'. At this point I was pregnant with Meggie and we had 1 year old Greg. As soon as we knew about Emma we realised Greg had the same condition. As it is genetic we knew Meggie also had a 1 in 4 chance of having it. When she was born in February 2005 it was obvious she was the only one not to have 'special bones'!

By April 2008 life was great. The children were at school and preschool and I was really happy in our new home in Oakley. Emma though really wasnt herself. Countless trips to the doctors, phone calls to nhs direct even trips to A&E didn't get to the bottom of why she kept being sick. Long story short eventually a doctor at the CDC in Bedford decided to check her blood pressure.... and life hasn't been the same since. She was rushed to Great Ormond Street with 'life threatening hypertension and chronic renal failure'. After 3 weeks they had managed to get her blood pressure down to a safe level using all sorts of drugs.

Between then and October 2009 we were back and forth to clinics. Checking her blood levels. We also started the process of living kidney donation. Alistairs blood isn't a match but mine is so I started the tests. Nothing was straightforward and I had to have numerous extra tests. But the end result was fantastic as I was given the all clear to donate when needed.

The plan was always that Emma would have a 'pre-emptive transplant'. This would mean she would avoid dialysis. Unfortunately in October her blood test results went unexpectantly high and she was rushed into GOSH again. A peritoneal dialysis catheter was inserted into her stomach and we began the next stage in our lives.... This type of dialysis can be done at home so we were given lots of training and again after 3 weeks came home- along with our machine and a garage full of fluids, drain bags plasters, wipes, swabs etc, etc.

Alongside getting used to dialysis our date for transplant came up- 15th December 2009. So 2 rather major things to get our heads round. Luckily with amazing support from family, friends and of course all the staff from GOSH we are heading towards this date with positive thoughts. Yes it is scary but Emma's quality of life will be so much better for it.

Emma goes into GOSH on Monday 14th and I will be at Guys hospital. The operation is on Tuesday and I will hopefully be with Emma by the Friday. Emma needs to stay on the ward for 7-10 days then we will be in the patient hotel over the road for as long as it takes to stabilise things.

I hope to be able to keep everyone informed by this as I then know everyone is aware of what is going on. I will try and text as well but I sometimes can't text straight way and then I know some people worry!

The picture by the way is when the children presented the money raised at Oakley Lower School to Victoria Ward. They were so pleased to get the money and so grateful to all the staff, children and parents.