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