LONDON'S CALLING!!!!!

With all of Tristan and my amazing health news we have decided to go and live a much bigger, more adventurous life. We are moving to London, ENGLAND!!!!

That was where my baby was born. So we will pack up our lives into 2 suitcases and around December 27th we are 'leaving on a jet plane'. Tristan has decided to do an English Literature degree in London and so we are off for him to get his A Levels and then onto University.

I am really excited to be going to a much bigger country, with more people that have EDS and more doctors that know what it is. I hope to meet people that have it and especially people with Classical EDS. Stay tuned for our new exciting adventure to unfold.

Love Rowena XXXXX

More amazing news!!!!

Hi Everyone,

I hope you are all well and again painfree. I know I always add the painfree comment, but I really do wish that for everyone. There is nothing worse than trying to have a wonderful life with the constant presence of pain.

Anyway, I just wanted to scream this from the roof top. Tristan had a mitral valve leak in his heart (like a little flap) when he was 4 years old. He has just gone back for his 10 year check up and it has healed itself and he does not need to go back to a Cardiologist for 10 years. That means he does not need an operation to correct it. I told him it was because I loved him so much, that's why it healed. He was too focused on his play station 3 to answer me and just slipped out a very monotone 'Mmmmm!"

So only one more check up to go now with my boy and that is for his spine. Having scoliosis has meant that his spine has a slight curvature. So having a happy life, wonderful healing abilities and lots of love is the ingredients for my boy being on the mend.

Love Rozee

x x x x x x x x x x

Tristan's operation was a huge success!!!!

Hi Everyone,

I hope you are all well and pain free. I just wanted you to know that Tristan's operation was a huge success. His surgeon Zachary Moaveni was incredible and has created the most beautiful chest for my son. Poor Tristan was in sooooo much pain and the medication from the epidural made him very sick. Vomiting when you have had your chest reconstructed was one of the most painful things I have ever seen.

I honestly did not think that I could love my son anymore than I already do, but I can. He was absolutely incredible through this whole experience and he did not complain once.

Here are some photos of my incredibly brave son:

















Already you can see that his chest is flat and looking very gorgeous. He was just sooooo incredibly brave. He is my absolute hero!!!! So there you are, my boy is fixed and is on the mend.

Love Rowena

X X X X

Wonderful News!!!!!

Hi Everyone,

I hope 2012 has brought you happiness and pain free days. I just wanted to let you know that I do not have the vascular COL3A1 gene. That means that I am only a 'Classical EDS Girl' through and through. Actually what the test result said was: 'NO MUTATION IDENTIFIED IN THE COL3A1 GENE'.

My genetic counsellor was so lovely and when he told me he had good news for me I bursted into tears. Tristan and I were both so relieved as it meant that my baby didn't have it either. This also meant that we did not need to cancel his operation.

Some more amazing news was that with my MRI results, my dilation was actually slightly smaller than first diagnosed on the echogram and I am classified as only having a midly dilated aortic root, which is a characteristic of Classical EDS.

So there you have it. I feel like I can push play on my life again and take it off the pause button. I just wanted to say a huge thank you to all the lovely people who sent we wondeful wishes and fingers crossed, it really helped knowing people were out there and caring about me.

Love Rowena

X X X X

Torrow I will know!!!!!

Hi Everyone,

Hope you are all well and happy? Just wanted you to know that tomorrow at 11.00am (NZ time) I will know the results to my gene test. I will let you know!!!

Rowena XXX

Tristan's Operation is happening!

Hi Everyone,

Happy New Year and I hope you are all well and pain free. My new year started with some amazing news. My gorgeous baby has an operation date: 27th January 2012. He has waited soooo long and he has been very paitent. So on that day he has his chest reconstructed and then his healing can begin. I am not just meaning physically but mentally as well. He has found his chest a real cross to bare and he has fallen into the silent shame of hiding his chest from the world. It is hard enough to be a teenager these days without having to deal with physical differences as well. I remember having so many scars on my legs from all of the stitches I had as a child. I would hide my legs at every opportunity and when people would stare at my scars it felt as if they were actually touching them. The shame I carried with my scars was exhausting and really difficult to live with at times. So I am so happy for my baby that he is getting his chest fixed and his confidence can be restored.

Another bit of lovely news is that my MRI results about my aortic root are in. My genetic counsellor said that it is still in the mildly dilated stage. This made my day! I am still waiting for my gene test to come back from America (so come on now America) but he tends to think I am only going to have Classical EDS.

What a great start to 2012!

Love Rowena

XXXXXXX

Waiting?

Hi Everyone,

I hope you are all well and I hope that Christmas was a very special time for you and your families. I was hoping for Christmas that I would get my 'ALL CLEAR' news from my genetic counsellor. Unfortunately, I heard nothing. I just can't seem to think about much else. The more I search the Internet, the more I keep stumbling over 'scary facts'. I have joined the website Inspire: https://www.inspire.com/ . It is full of wonderful people who are strong and truly inspiring. They have every type of EDS and all of them deal with their symptoms in their own unique and powerful way. I just feel that the unknown is just a huge grey area. As a person who only lives in the 'black and white' areas of her life, the 'grey' just does not suit my personality at all.

Many people believe that everyone is meant to learn a lesson during their lives. It may be to be more caring, empathetic, kind, trustworthy or to have patient. I believe mine is patience!!! Waiting for this news has made me look over my life and realise a very wonderful thing...........I am truly blessed.

I know that people who look at my blog only know the medical facts about me but what you don't know is that I have the most wonderful life. I am a mother to my gorgeous Tristan who is such an incredible, kind, loving and very funny teenager. I am a daughter to a mother that adores me and tells me everyday how special I am. I am a daughter to a father who tells me he is proud that I brought my son up on my own. I am a sister to 5 incredibly talented siblings who I am extrememly proud of. I am friend to the most amazing women who love me unconditionally. And I am a teacher who loves her career and adores the families and the children I have been lucky enough to have spent the last 8 years with. I am truly blessed!

So, no matter what the outcome, no matter what the results, I will always be able to say that I am so much more than the 'genetic cards' I have been dealt. EDS will never just define who I am or shine brighter than everything else I have in my life. Once my results are in I will deal with them because there is nothing else I can do. So hurry up results, hurry up genetic test tube guys in Seattle, U.S.A and hurry back to NZ and to my genetic counsellor. Then once I have them, I can continue on with my blessed life and be armed with all of the 'black and white' facts.

Take care everyone.

Love Rowena XXXX