Beyond Achondroplasia

Growing together with Clara

November 25, 2014
by inesp.alves
3 Comments

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. Now, … Continue reading

November 11, 2014
by inesp.alves
1 Comment

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 submitted, since early days, to some type of surgical procedure … Continue reading

August 17, 2014
by inesp.alves
1 Comment

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 signs in their children without recognizing them to be neurologic alterations. I … Continue reading

March 20, 2014
by inesp.alves
0 comments

Use of Intraoperative Computed Tomography to perform foramen magnum cervicomedullary decompression

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 computed tomography. This image technique is considered to be helpful … Continue reading

February 5, 2014
by inesp.alves
0 comments

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 continuous … Continue reading

January 13, 2014
by inesp.alves
1 Comment

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 14 years old girl, … Continue reading

Miringotomy – ear tubes

July 1, 2013 by inesp.alves | 0 comments

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. She had a bilateral chronic otitis, due to narrowing in her eustachian tubes. These tubes allow the middle ear to drain and to relieve pressure. Clara had effusion in both ears so they were completely filled, like shown in this animation. The reason for this was because her eustachian tubes were and are quite narrow. So, every sound that she eared wasn´t sharp, but at least, she didn´t show any sign of pain due to the otitis media. Now, hopefully, that will be quite different, for better!

June 26, 2013
by inesp.alves
1 Comment

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 the ICU (Intensive care … Continue reading

June 22, 2013
by inesp.alves
2 Comments

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 a … Continue reading

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