Thank you Universe!!!!!

Dearest Universe,

I have been so disheartened over the past few years with the medical issues that Tris and I have had to go through. The flippant comments from the sterile Researcher, the mirad of test, MRI's, doctor appointments, hospital appointments and the dreaded waiting (being the worst thing). Last month I had an absolute 'RAAAAAAA!" for you to know that we have had enough and I wanted things to change.

Well change they did. Tris' surgery was a huge success!!!! He did not have Marfans Syndrome!!!!! And today my cardiologist contacted me with such a wonderful piece of news. She let me know that my aortic root has not got any bigger, it is the same size it was 4 years ago. It means that I do not even need to talk about surgery, let alone worry about it.

So I thank you Universe for hearing me and for the wonderful 3!!!!! That 'All good news comes in 3's'!!! And for the peace that I now have in my heart. I have been so strong all my life with my EDS and I always just coped with what came with it. But now we are done, we have been through the trials and tribulations and now it is our time to be armed with 'enough is enough' and to feel that we can go to London and have a healthy and happy new life there.

Love Rowena and Tristan

XXXXXXXXXXXXXXX

No Marfan Syndrome!!!!

Hi Everyone,

I hope you are well and pain free. I just wanted to post and let you know that my Tristan does not have Marfan Syndrome. YAY!!!!!!!!!!!!!!!!!!!!!!

He had his Genetic Counselling appointment today and he only have 5 of many characteristics of Marfan's. Because his eyes are okay and his heart is in tip top shape, his skeletal deformities no longer count toward the Marfan Syndrome characteristic.

He no longer has to have any more hospital appointments, no more genetic tests and no more WORRY!!!!

Love From Rowena XXXXXXXXXXX

Tristan's Wonderful Transformantion!

Hi Everyone,

I hope you are all well and pain free. I just wanted to share the amazing photos of my boys new chest. Yesterday he had his last check up with his surgeon and here are the amazing results;

Before and After photos:



We spoke to his surgeon about that blatant researcher saying that it sounds like Tristan has Marfans Syndrome, and he said, "Most of the children I see who have Pectus Excavatum do not have Marfans". That truly put my heart at ease. I have not been at all worried about the possibility, as I know Tristan won't have it. Highlighted are the only characteristics that Tristan has to Marfans:

  Marfan Syndrome Characteristics:

• Lung tissue (there may be a pneumothorax, in which air can escape from the lung into the chest cavity and collapse the lung)
• The aorta, the main blood vessel that takes blood from the heart to the body may stretch or become weak (called aortic dilation or aortic aneurysm)
• The eyes, causing cataracts and other problems (such as a dislocation of the lenses)
• The skin
• Tissue covering the spinal cord

• A chest that sinks in or sticks out -- funnel chest (pectus excavatum) or pigeon breast (pectus carinatum)
• Flat feet
• Highly arched palate and crowded teeth
• Hypotonia
• Joints that are too flexible (but the elbows may be less flexible)
• Learning disability
• Movement of the lens of the eye from its normal position (dislocation)
• Nearsightedness
• Small lower jaw (micrognathia)
• Spine that curves to one side (scoliosis)
• Thin, narrow face

So as you can see, my heart is not at all worried. We have been given an appointment to go back to Genetic Counselling on November 7th. So I will let you know the great news then. 

'Positive thinking is the only way forward and the only way to create a better future'.      
                By Rowena Lee Brewer

Love Rowena XXXX

P.S: I had the permission from my son to put these photos on. He wanted to share his transformation and is very proud of his new chest.

More amazing news!!!

Hi Everyone,

I just wanted to share my boys fabulous news. Tristan went to visit Starship Hospital last week about his scoliosis. The Doctor told us that he has officially stopped growing (6ft) and his curvature in his spine will not get any worse. This means that he will not need an operation to fuse his spine.

Oh happy, happy day and may his genetic test about 'Marfan Syndrome' be negative and be just a slip of the tongue by that silly researcher. I have a huge feeling in my heart that he does not have that and I am going by what I feel.

Love Rowena XXXX

Oh Happy Day!!!!!

Hi Everyone,

I hope you are well and enjoying pain free days.

I have some very exciting news to share. My son had his last spine check today for his scoliosis. He has officially stopped growing and his spine curvature has completely stopped. He no longer needs to get it checked and does not need an operation to fuse his spine!!! My boy is going to be okay and I am over the moon and sooooooooo happy.

Love Rowena XXXXX