Saturday, 3 August 2013
Prosthetic questions.
I have recently been contacted by a very lovely lady who was one of the first children to receive the myoelectric 'bionic' hand. She has also had experience using a wide range of prosthesis throughout her life. I'm so pleased as I'm sure she is going to be a great help to all of us who have prosthetic related questions. So come on, ask away!!
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Tasneem Carrim's story
ReplyDeleteNurayn Carrim Ballim
Introducing Nurayn and family
Written by tcarrim, published less than a minute ago. This story is also published in the DysNet community.
Description: Nurayn Carrim Ballim
Nurayn’s story
Nurayn joined our family 2 years and 5 months ago. She was born in Pretoria, South Africa. Her name means light, twin lights to be more precise. And she is definitely full of light.
On the day she was born, we discovered that her right arm was not fully developed. She has no elbow, her humerus and radius are fused, she has two fingers on her right hand and there are some shoulder complications but we are not sure what yet. Her left hand is 'normal'.
Nurayn has an older brother, Salif, who is 5 years old. My husband and I decided late in our lives to become parents. I also have a chronic condition called rheumatoid arthritis, so the decision to have children was a conscious one and carefully considered. There were a number of risks which were carefully mitigated, with the help of a super gynaecologist/ obstetrician. The only issue we faced with the birth of Salif was that I had a huge flare of the arthritis after the caesarian.
We were doubly cautious in planning the next pregnancy, with advice from my rheumatologist sought prior to even attempting to fall pregnant. I was told that of the drugs I was on, the only one I needed to worry about was a drug called methotrexate. In retrospect, we have wondered whether another drug that I was not weaned off, Azapress, might have had a role in causing the disability.
We have been told that the cause can never really be determined, and we don't worry too much about pursuing it. One day maybe Nurayn will want to know what the cause was and we probably need to be ready then.
Right now, Nurayn is a bubbly, bossy, independent, talented 2 year old. This picture is Nurayn at her second birthday. She receives Occupational Therapy and physiotherapy once a week. She uses her right arm for almost everything. We are engaging an orthopaedic surgeon and prosthetist to investigate a prosthesis for her, mainly to prevent scoliosis and also to give her better balance. After having researched this element a bit, I came to the conclusion that should Nurayn chose to use a prosthesis later in life, her choice will be easier to implement if she already had the habit of something on her arm from an early age. (I am aware that the rejection rate of arm prosthetics is high). At the same time we don’t want to limit her natural ability, so we envisage a situation where she will wear it half the day and will not wear it the other half. I would welcome any comments or suggestions on this issue.
I would also like to start a conversation about the choice of primary school for Nurayn. What is the advice from parents or adults with limb differences? Would like to hear from others on any advice you can offer. In the meantime, we love reading all the stories on the dysnet newsletter and take bucketloads of inspiration from them.
Written by tcarrim, published less than a minute ago. This story is also published in the DysNet community.