Trisomy a positive experience

Feels like it is an exciting time for the trisomy community at present. A study of parent responses to living with there children has been recently published and overwhelmingly the parents reported their children enriching their lives and leading happy lives themselves. This is in contrast to what many people including myself are told during the pregnancy. In my case since I did not confirm with an amino that Lachlan had T18(he received his diagnosis at 12 days old) it was in the form of subtle conversations during my high level ultrasound scans. Comments like "Termination is still possible if you had an amino and found T18" and "You do have other other children you know" and " if we do and amino and find T18 you wont be able to have a c section". However I was never really pushed and I did have a wonderful OB/GYN who respected my decision not to find out but was still preparing me that Lachlan would have some issues. He also is blessed with a wonderful Paediatrician who values him.
If I could go back and advise myself or give the doctors advise on how to approach someone who decides to carry to term (as opposed to deciding on termination) I would have like to be told your journey will be filled with challenges BUT your child will be worth it no matter how short their life may be, you will have the opportunity to met some of the most inspiring people on this journey- the other parents who share this unique journey, you will grow as a person and surprise yourself with your ability to cope and your eyes will be opened to the unique people who live with trisomy and other severe disabilities.
If you are part of the trisomy community you may have already seen these but if not may I recommend Jill's  blog g-giftoflife.blogspot.com titled July 23,2012 we have a voice and http://neonatalresearch.org/2012/07/23/our-children-are-not-a-diagnosis-the-family-experience-of-trisomy-13-and-18

Where you can read of all the people behind these exciting articles.

I truely believe as a society we will become more inclusive and better informed and technology will help us do this as we are able to read each others stories. Life is challenging for us all at times together we can make it easier.

Lachlan turns 2

Today Lachlan is two. We are very proud of him and just love him more every day. The first year of his life we were always on tender hooks expecting him not to make it to his first birthday. When he did it felt like we finally breathed out and he had a huge party to celebrate. This second year feels like the adjustment is being made into what having a child with special needs is more about. We are not having a party this year but have done some special things and made a great cake. Yesterday I had the privilege of talking with two other T18 mums in Australia for the first time on Skype. It was really wonderful and the connections made through the Trisomy community are a continued support to us.

my teddy cake for today

my icecream cake from last night

 thank you Nanna and Pop

"Guess how much I love you"

recordable book. Tastes good

so does my card

in the stander that he got a  a couple of months ago

look how far I have come this is me at my first birthday.

Thank you for reading

Cardiology

Lachlan had a cardilogy check up today. His VSD is still there. It is pretty loud you can hear it easily. Thats a good thing because it means the hole is small. It hasn't changed in size over the last year approximately 2mm. The good news is that his heart is the right size and there is normal pressure in all chambers (no pulmonary hypertension) His cardiologist is happy to review in 2 years!! He was also very happy to see how happy Lachlan was.

One week and one day til TWO!

Hanging out with my Family

 Hanging out with Dad (tastes good this controller)

 With Abby

and Hannah

And mummy tickling me

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.