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

Dr. Diana is fantastic!

Hi Everyone,

I hope that you are well and pain free. I have just discovered the neatest person ever on 'You Tube'. Her name is Dr. Diana and she is a doctor and a paitent who has Classic EDS. I am over the moon to have found her. Her video's are so clear and easy to follow. When she ran through the Classic EDS characteristics I had all 9 like she does. It is just so wonderful to know there is a doctor out there in the world who actually knows what it means to have this condition and who is actually studying and helping people with it. If you want to know more, her website is: www.PrettyIll.com.

Love Rowena

x x x x

8 weeks for results!!!!!

Hi Everyone,

I hope you are all well and pain free. Well back in July I went to genetic counselling to determine whether I had Type 4 EDS as well as Classic EDS. Well, through visual tests I didn't, yay! Today I spoke to my genetic counsellor and because my aortic root has continued to dilate, he is now sending me to have the Vascular gene test. I cried.

I have recently visited a cardiologist who has stated that my aortic root has dilated to 4.3cm. At 4.5cm they will have to do surgery to fix it. That means that basically they cut my chest open and put a synthetic band around the aortic root so it will not burst. So that was bad enough news and then today there was the news from my gentic counsellor. I am starting to feel like I need just a break from the negative news and have some wonderful news coming my way.

My son has been accepted to have his pectus excavatum operation done within the next 6 months. He is super excited about this, I am super nervous. It means he will no longer have a dent in his chest and he will feel so much more confident to take his shirt off when he swims.

So, fingers and toes crossed that the vascular gene test will come back as not being identified and that this silly heart dilation is just a thing that has happend.

Love Rowena

x x x x