Beyond Achondroplasia

Growing together with Clara

July 10, 2016
by inesp.alves
0 comments

Basic indications to handle a baby/young child with achondroplasia

1. Avoid devices that bend the back: soft infant carriers, infant swings, umbrella strollers and other soft devices; 2. Use hard backed carriages, strollers and supportive devices; 3. Support the baby’s head and back of the neck at all times; … Continue reading

September 21, 2015
by inesp.alves
0 comments

Lying to sitting to standing up in achondroplasia

Children with achondroplasia usually have strategies to pass by different phases of gross motor skills acquisition. In the article “Development in children with achondroplasia: a prospective clinical cohort study” Ireland, P. J., Donaghey, S., McGill, J., Zankl, A., Ware, R. S., … Continue reading

April 6, 2015
by inesp.alves
3 Comments

Gratitude and acknowledgement

In September 2011, when Clara was 1 year-old, she joined the kindergarten Colégio Fundação Alentejo. Those days were a huge trial for us and for the kindergarten professionals. We wondered if us and them were prepared for the challenge. At … Continue reading

November 25, 2014
by inesp.alves
1 Comment

Day dreaming by Joan Pahisa

Joan is an amazing young man. He has a great smile, always inspiring others, very well-educated and with a genial energy for sports. He is totally engaging. I meet him last October during the International Congress around achondroplasia and other skeletal … Continue reading

October 22, 2014
by inesp.alves
2 Comments

Subdural hematoma update

Medicine is the science of the diagnosis, treatment, and prevention of diseases. But is not mathematics. Besides knowledge and experience, medical doctors need to have sensibility for the problem and inspiration. Clara’s MRI with the subdural hematoma has been evaluated by … Continue reading

September 25, 2014
by inesp.alves
1 Comment

Anual MRI

Since the surprise from the results of the first MRI, when Clara was 9 months old, that anxiety was always there on the other two times Clara was submitted to this exam. The sedation procedure with inhalatory anesthetic is smooth and painless … Continue reading

August 30, 2014
by inesp.alves
6 Comments

Two years and counting

Two years have passed since this instant, when Clara was born. The perception of time passing has such an amazingly personal and unique touch and ability to slow or fast our nature clock. And passing by all these days and … Continue reading

July 24, 2014
by inesp.alves
1 Comment

The long way up

Rarely I´ve mentioned here the hard and slow road of limb lenghtening. My first research on achondroplasia was at the day we received the genetic report confirming Clara had achondroplasia. Some moments get engraved in our memories in the hardest … Continue reading

July 17, 2014
by inesp.alves
5 Comments

Some moments of pure enchantment

 

Translate »