Beyond Achondroplasia

Growing together with Clara

Waiting pays off

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Since September we lived with a new short-term goal: solve the hematoma problem.

It have been quite strange months, almost like living in a limbo, trying to do our best to prevent new falls and head bumps. It was hard. Clara felts a lot: the disproportion between the large head, the shorts arms and legs and two very small feet, increase the chances of falling. The protection methods were reviewed and Clara stayed at home most of these months, once her neurosurgeons team option was a conservative approach: rest and staying away plays with other kids.

We tried do the best. And after dealing for months with the idea of a new surgery, a more invasive one, to her head, with several risks, we all did well. Clara, off course, did the best possible!

The hematoma was 90% reabsorbed, after 6 months it was identified in a MRI! Although at least two neurosurgeons had no doubt that Clara needed a trepanation surgery, that the hematoma wouldn´t be reabsorbed, and other two neurosurgeons choose to wait (once Clara didn´t have any neurologic sign) we, with her neurosurgeons, chose to wait.

It´s important to have in mind that medicine is not mathematics. And that each person is an individual with particular characteristics.

This particular case went well. Clara was closely monitored at all time. That changes a lot of the outcome too.

And most important, we hear and we are heard by her doctors team. The doctors explain deeply the questions and that is crucial for understanding every problem. We discuss approaches with them and, since she was born, we grown in trust with them all, because of this open relation. They are another family.

Well, it was a tough call to wait. But now, it pays off!

When I saw the last control CT scan, it was an incredible feeling!  The joy was tremendous. One less problem to go! And these days seem the best life can bring.

27 nov BA

27th November 2014

9 dez BA

9th December 2014

2

19th February 2015

4

19th February 2015

1

Yesterday, 20th March 2015, waiting for a ENT appointment

One Comment

  1. Good progress Clara
    Happy to hear those good news
    Keep going girl

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