Faster, Higher, Stronger.....

When Daisy was nearly 7 months old she had a gastrostomy tube inserted as an emergency case.  It was an emergency because at the time we were relying on a nasal-gastric tube to feed her and her vomiting and excess secretions meant that it would come out several times a day and she was losing weight and dropping her blood sugars constantly as a result - as we now know the weight loss was going to happen regardless as her gut became unfeedable but at the time we had to try every option.

Gastrostomy insertions are often done as a day case or overnight but at that point in her life Daisy was needing intensive care after every anaesthetic so she had 24 hours in ICU plus a couple of days on a surgical ward before she was well enough to come home.

That week in July was a big one in the UK and Daisy and I were able to witness it all , while the rest of the family were at work and school.  On the 6th July we turned on the TV for the live announcement of the decision on who was to host the Olympics in 2012 - I had been following the progress of the bid keenly and was over the moon when the announcement was made, hugging Daisy, not really thinking about what the next 7 years would bring.

Take time to smell the roses

When I walk home with Jules, my 9 year old son, from school we pass a house which has roses in the front garden.  These are not the weedy, insipid offerings you see on garage forecourts, these are big, blousy, fragrant roses - the old fashioned ones I remember from my childhood.  And more often than not I stop to smell them. Just have that moment, breathing in their heady scent, before the chaos of the evening descends.

I'm a kitchen table revolutionary

I went to my first ever conference for bloggers last week. What an amazing experience to completely immerse myself in the world of blogging with hundreds of like minded women (and a sprinkling of men), hear some inspiring speakers, ask lots of questions and just have time to really think about where am I going with my writing.

Too much information?

An article appeared in the New York Times this week announcing a breakthrough in antenatal testing which is non-invasive so carries no miscarriage risk but could potentially identify up to 3,000 genetic diseases caused by gene mutations

http://www.nytimes.com/2012/06/07/health/tests-of-parents-are-used-to-map-genes-of-a-fetus.html?_r=1

At the moment antenatal screening is limited to a handful of know disorders such as Downs, or where there is an inherited risk such as Cystic Fibrosis.  The definitive test involves an invasive procedure, either amniocentesis or CVS (chorionic villus sampling) to obtain genetic material in order to establish the baby's karyotype and whether they are carrying a known genetic disease.

Genome mapping and it's applications was in its infancy when Daisy was born but within a year the mutation for Costello Syndrome had been identified and there is now a theoretical chance that babies could be diagnosed antenatally with the syndrome.  This new test also means that screening can be done for a huge range of known genetic syndromes without any risk of miscarriage. Pandora's Box has been opened....

When I was pregnant with Daisy, we were given a 1:4 chance of having a child with Downs.  We had breezed into the scan, with a family holiday booked for the end of the week and feeling like we were old hands at this pregnancy game, that's when the first of the thousands of Daisy-shaped curve balls hit us.  The consultant seemed to spend ages looking at the monitor and then made an excuse to leave the room, when he came back it was with a Nurse - we now know she is the nurse specialist for Fetal Medicine and that's when we were told that our chances of having a baby with Downs were 1 in 4.  And all that was mentioned was Downs, or at least that's what we heard, we went home and I googled and read and tried to remind myself that 1 in 4 meant that the odds were still in our favour (just!).

Trying to keep my head, when all around me are losing theirs.....

Daisy had another hospital stay this week, another surgery, another anaesthetic.  She had to have her Hickman line (the central line tunnelled into a main vein which rests near her heart) removed and a new one place in a new vein as the old one had been repaired once and was at risk of breaking and also was colonised with bugs which we were just about keeping under control but which could have caused sepsis at any time.

I'm losing count but by my reckoning that's 9 central lines she has had in her life (with the scars of insertions and removals crisscrossing her chest and neck to prove it) and close on 60 anaesthetics for various surgeries and procedure.....more than the majority of the human population will experience in their lifetime.

Spontaneous Planning

We are at the end of another half term and have made it through in one piece.  I am so grateful for every school holiday we get to spend together because we have lost so much family time over the years. This time of normality has also shown us how different our lives in the real world are as we try to function as a family, this week provided many examples and made me realise that what I am constantly trying to do is spontaneously plan in order to do the normal childhood stuff other families take for granted.

It can't have escaped anyone's attention that there is a lot going on in my home town of London at the moment - all this week we have had the Diamond Jubilee Celebrations then in a few weeks time the Olympics start.

Volunteering - it's a two way street

Not many people know this, and I don't really talk about it (not because I don't want to, I guess talking about my family takes up most of my time!) but in what minimal spare time I have in my life I am a leader of a Girl Guide Unit.

Some of you may be new to this blog and not realise how little spare time I actually have,  if you read some of the old posts and the All about me link the you will see that my life is very full on and spare time is something of a premium in my world.  But being involved in Girl Guiding is something very important to me and so I make time for it.

Actually, thinking about it my experience as a Girl Guide has really shaped a lot of my approach to life although maybe I didn't know it at the time.  Like many women my age I was a Brownie (no Rainbows in my day) and once I turned 10 I moved up to Guides.  Those who know me well will not be surprised to learn that I embraced everything about Guiding, I did every badge I could, I entered every competition, I read my Guiding Handbook from cover to cover and I achieved the ultimate Guiding accolade - The Queen's Guide Award.

Yes, I have kept my old Guide uniform!

I have Costello Syndrome, Costello Syndrome does not have me

I have amended this quote from one I saw on the back of a running vest as I ran the Bupa London 10k on Sunday - the quote I saw was "my name is Jo, I have MS, MS doesn't have me".  That really inspired me.

If Daisy could talk fluently and tell you how she felt then I think she would say this because this is how she lives her life.

Every single day is a monumental challenge for Daisy and truly I do not believe even those closest to her know what a challenge it is - I guess only Andy and I as her parents have a little inkling of the mountains Daisy has to climb day in day out just to squeeze every moment out of her day and be the little girl she wants to be.