Discoveries along the way

The lead up to surgery led to a the discovery of a connective tissue disorder. We do not know what type she has and have had to see several geneticists about this thus far.

So far, the best guess is HEDS which stands for Hypermobile Ehlers Danlos Syndrome. This means that she is very bendy and it can cause harm to her joints and body. As well as harming joints it can come with quite a bit of pain. She is able to sublimate joints and do things that others would not be able to do without breaking their joints. We’ve know for some time that flexibility was an issue, but did not know it could get worse or that it was a condition.

Aside from the joint issues it can lead to overall nerve problems. The nerves that control the eyes and ears are the ones we focus on most due to the direct impact it has on everyday functioning and quality of life. Olive already has deafness is one ear and issues with her eye nerves, but it is stable at this time.

For more information about Ehlers Danlos see below:

https://www.ehlers-danlos.com/what-is-eds/

As a result of these discoveries we are seeing many specialist during January to determine braces and best practices to prevent any further damage and to continue monitoring. We have new Orthotics that are coming from her physical therapist to prevent her ankle from rolling in.

Over the past year it has occurred to me that she is standing on the ball of her ankle. (Meaning it will roll until the ball is on the ground instead of the bottom of her foot.) This is dangerous and could lead to joint damage, so we are getting educated as a family on how to keep her exercised and fit considering that her needs are going to be somewhat different. This condition is somewhat rare but there are enough studies done that best practices have been established.

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