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New Home
We moved to a new home. In the next couple of weeks we will be living at the hospital. This new home is filled with different faces everyday that soon become familiar. And ever single one of them tells...
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Clara between us
When words fail, images win a space in our thoughts. With time, words will come. Now, Clara is again with us. Emotions wan us over today. In our room, at 8am, few moments before someone came to take...
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The first day after
And one day went through! Since thursday, I stayed with Clara at the hospital during all day and night. But last night (the first after surgeries) and tonight, my husband wanted to stay with Clara at...
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Miringotomy – ear tubes
One week ago, Clara has also gone through a bilateral miringotomy, before the laminectomy. That way, she won´t need to me put under anesthesia in a couple of months from now again for this surgery....
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Achondroplasia: Pre- and postsurgical considerations for midface advancement
Although 10 years have passed since this article was published (1994), I found it very interesting, since it was the first time I read about a surgical approach of this kind. In this particular case, a...
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New ear tubes – bilateral tympanostomy tube surgery
Yesterday was the day for Clara to have new ear tubes. The previous ones felt off: the left one, 4 weeks ago and the right one week ago. And since the left tube came off, Clara has had almost...
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Use of Intraoperative Computed Tomography to perform foramen magnum...
Before a cervicomedullary decompression surgery, it is essential to do an MRI. It wasn´t a regular procedure to perform CAT scan during surgery. In recent studies, a Japanese team used intraoperative...
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Neurologic signs of cervico-medullary compression
Lately, I´ve knew about other children with Clara´s age and with achondroplasia that had to undergone emergency cervico-medullary decompression surgery. I know also that some parents observe strange...
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Anesthesia recommendations for achondroplasia
This is an important document, by www.orphananesthesia.eu. It´s good to carry it together with all the medical information once is very likely that a person with achondroplasia will need to be...
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Far from the tree
I’ve been reading this amazing book for a while now. It´s dense, but clear. An excelent book by Andrew Solomon. And it open ideas wider than I could imagine. It as become a moment for pause in my days....
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