A side visit to Hospital

What a difference a day makes. Tuesday afternoon after returning from work Lachlan didn't seem quite right and had a temp of 40C. I took him down to emergency thinking this must be another UTI. He was admitted for two nights but they really couldn't find anything and on Wednesday and Today normal temps. Conclusion some sort of Virus (evil things viruses).
Last night we were moved to a room to share with a little girl who had severe cerebral palsy. I have been challenged by coming up to a two year old birthday for Lachlan as the second birthday is a bit more for the child than the first and your mind does go to things that he can't do like talk or walk. I couldn't help but think though that Lachlan compared to this beautiful little girl is doing well he can hold and chew on toys, rolls over, smiles and laughs appropriately. I wondered if they would wish these milestones for their daughter or maybe as she is 4 they have achieved acceptance.

Working towards constant acceptance of how things are not how I wish they might be.

Two weeks til two

Lachlan has exactly two weeks to go until two years old. He goes once a month to see a physiotherapist at disability services. Julie normally works him pretty hard. even doing simple things like standing and sitting with support take a huge effort on Lachlan's part. He usually  is not very impressed with the effort he has to make over the hour. Today he was on a fit ball and they have just installed a mirror. He liked being on the ball.

Lachlan's countdown to Two Years old

So the last post was DandM. I feel the clarity I was trying to achieve when starting a blog. Now I can get back to the fun stuff.
Lachlan will be two on the 23rd. My trisomy friend Cara did a photo countdown to her daughter's second birthday and all good ideas should be pinched so I am pinching this one.

8th July 2012

The Sleeping Prince

Beliefs

Well this blogging lark may become addictive!
Ever since thinking about starting a blog this blog post has been running around in my mind. Obviously beliefs are a very personal view point and I think individual beliefs are an absolute right. This post is my attempt at being honest with myself and anyone who cares to read this blog. It is not designed to upset or influence anyone.
I have always been interested in religion, faith and the human search for meaning. Having a child with a naturally short life span brings these topics to the forefront in many ways.
I was not brought up in a church going family but a very moral and ethical one. My mother died when I was just 12 about to start high school. One of her wishes was that my sister and I attend private high school. We attended a Lutheran school and I am grateful for the education I received there and the insight into the Lutheran faith and the other religious teachings we were able to be exposed to. As I left high school and made my way into the world my belief system has changed and I image it will continue to evolve.
At this point I do not believe in a personal God. However the term agnostic doesn't fit either and I can't imagine atheism. At this point I am comfortable sitting in doubt of religion. I have a belief that somehow we are all connected ( as my friend Cass says maybe we are not supposed to know exactly) that if God exists he resides within us all.
Many of the people on the trisomy journey have a very strong belief and faith. I respect and appreciate that in them.  I just want to say it is possible to be on this journey without that belief system. The qualities that I admire in anyone are a life focused on loving and a humbleness these are generally always present in people of deep faith but they also can be without it.
Submitted with respect,

Rachel

Lachlan's outing to Genetic health

Lachlan and I had a visit to Genetic Health today. Lachlan has a mosaic trisomy diagnosis from blood taken when he was a few days old.There was only a small amount of blood cells that did not have trisomy 18 around 5-6 %. A mosaic diagnosis means that in different cell lines different amounts of trisomy cells will be present for example the digestive tract could have no trisomy cells, skin could have 50% and blood 95% but because we cannot test all the organ systems we never know for sure how a mosaic trisomy child will be affected.
 At todays visit I was requesting another blood test to see if Lachlan's percentage had changed however I was told there is no point doing this as he will certainly have less trisomy cells in his blood now and with every year there will be less. That is the theory anyway. I felt a bit dismissed but I do understand the theory.
I felt that the doctor had a good grasp on the genetic theory of trisomy children but had no real experience with living children. The same thing I am finding with most of Lachlan's doctors. So like he said we dont know what issues will come up for Lachlan and it is just a matter of finding the best doctors willing to care for him. Luckily Lachlan has a great Peadriatrician. The genetic doctor said to leave the medical side of  Lachlan's care to his Peadriatrician and just enjoy being his mum. Easier said than done and probably not going to happen that mum suddenly takes a back seat but very glad we have the care for Lachlan that we are getting.

 Not going back to genetic health again- unless it is to show Lachlan off.

Beginning

My name is Rachel and I am the mum of a very special little boy. His name is Lachlan he has an extra 18th chromosome. This condition is called Trisomy 18 or Edwards syndrome. The life expectancy of children with Trisomy 18 is usually short so short that most people have never heard of the condition. Lachlan is defying the odds he has passed the two week expectation he recieved when his diagnosis was confirmed at 12 days old. He passed the one month mark and the five month mark when he got the pneumonia that he appartently shouldn't have survived. He turned one something only 5- 10 % of all children with trisomy 18 get to celebrate. He has just turned 22 months which encourages us that he will be still here to celebrate his two year old birthday with us.
Why blog? I have been close many times but Lachlan recently had his first surgery and I promised myself if he came through I would start. Other parents blog about their children with T18 and I enjoy reading their blogs and see the value the record can provide for a life that may not be measured in years. Emotions can be mixed and complicated and recording can provide clarity. Also there is the desire to provide that spark of hope that may be very elusive to fellow parents finding about this condition for the first time. Also to give and gain support from others on this journey.

I hope to use this blog to track Lachlan's progress,sort through feelings and provide insight to myself.