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Rare disease day.

Olivia has 2! 

Congenital pseudarthrosis of the fibula (one in a million) and cyclical vomiting syndrome (3 in 100,000). 

Last week we had a ortho check up. New x-rays show she is doing well. After having the screw removed her ankle is stable. She does now have a limb length difference and if she finally starts to grow it will likely get worse but we will deal with that if it happens. She is now able to go a full year before her next check up. 

As far as her CVS... since getting the g tube she has only had a few episodes and they don't last long at all. I think beimg able to start fluids as soon as it starts helps a lot. Plus being able to get meds in without throwing them up.

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