I am just sending this post out into the abyss. In return all I can ask for is kind thoughts and prayers for my baby. I have noticed over the last year Tristan's chest becoming more and more sunken. Tristan didn't want to talk about it and so I just kept an eye on it. I went on the internet and this is what I found out.
Pectus excavatum is a congenital disorder which causes the chest to have a sunken or "caved in" appearance. It is the most common congenital chest wall abnormality in children. Typically the disorder is noticeable at birth and becomes more noticeable during the rapid growth period of adolescence. The severity can range from a moderate indentation in the chest to an extreme concave depression that can constrict the internal organs.
A few weeks ago I had to take Tristan to the doctor for an infected toe. I asked the doctor to look at his chest and his spine. She said that his spine is crooked and he does have a sunken chest. She has referred us for Paediatric care at Starship Hospital in Auckland and now it is just a waiting game, waiting for an appointment.
There are things they can do to fix it but this looks like the scariest. My concern is that Tristan has finally found a sport that he loves. He hasn't been able to play any sport competitively due to his EDS and his skin tearing, so he has found Basketball and he is amazing. Now this has turned up. I am going to have one small "AAaaaahhhhhhhhhhhh!" moment. It is just not fair; he has EDS, he has a heart defect, a father who is missing in action in England and who doesn't give him a second thought and now this with a crocked spine thrown in. THIS IS ENOUGH NOW..........THIS IS ENOUGH!!!!!
I always find the silver lining, the postive out look and know in my heart of heart that everything is going to be okay, but today I just feel a wee bit mad!
I do hope that all of you that read this are in good health, surrounded with happiness and peace.
Love Rowena X
Rowena, my heart goes out to you. As a mother with EDS, I am watching my nearly 20 year old daughter watch her own lifw dreams slip by as she realises her EDS is real. The condition is cruel. Your son has the benefit of youth on his side and my guess is you will watch him find inner strengths, resources that will help him fight on. You are right its not fair. You have each other and as my daughter and I fight on together. So will you too. You are so entitled to you day of mad. I felt mad reading the post, the injustice of it all, the downright cruel blow. So when you feel like this continue to blog here, you are in my reader.
ReplyDeleteRowena, a virtual hug from me for you to keep.
Thank you for the hug and for sending me a message. We send big hugs to you and your daughter too! X
ReplyDeleteI don't know that you sent this out into the abyss because you have found your way into my prayers. I hope all the positive energy you need finds its way to you!
ReplyDeleteI should mention I too have EDS and understand the trials that go along with it.
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