Evelyn has Osteogenesis Imperfecta (OI)

Evelyn has Osteogenesis Imperfecta (OI)

Thursday 15 May 2014

Break again

Life with OI is like a roller coaster. When the UP is visiting you not long ago, the DOWN will knock the door.

Ever since Evelyn can walk unaided she has been excited to explore around. While playing climbing up & down the sofa, she fell and broke her right femur :(

Evelyn admitted and being splinted for a week then followed by a spica cast. Evelyn's been emotional knowing her will be in that cast for 6 weeks! She cried for the discomfort and also the limited movement in that cast. Consoling her with the cast day was a big challenge. She can only lie on her back or did tummy time with a cushion/ bean support on her tummy. We have been entertaning her with iPad and books activities.

This is her right femur xray. It takes 6 weeks to heal. We are hoping for a beautiful healing and never want to see it break again.

Right femur fracture

Right femur fracture


Tummy time on the cushion



Sitting on daddy's









Evelyn loose weight again during this cast period. She was at 8.3kg the week before her break. Honestly dealing with spica cast is not fun. Evelyn has had rashes all around her private part because of her urine and hygience. We cleaned the area with some protection so her skin would not have direct contact with the inner cast.  We spent an hour or two twice daily to dry up the area followed by rashes cream. She was awaken at the middle of each night crying for the discomfort and the pain of her bones and rashes area.

She is such a strongest and bravest girl. She still smiling and make joke. Laugh can cure the pain. Laugh make our journey an easier ones.



"Adversity is like a strong wind. It tears away from us all but the things that cannot be torn, so that we see ourselves as we really are." ~Arthur Golden, Memoirs of a Geisha



Thursday 20 March 2014

Slow and yet achievable

Where did the time go? I cant believe it has been so long since my last update on Evelyn. She has been doing great over the last few months. Apart from the mild pneumonia - she stayed a week again, she has been progressed wonderfully!!! Look at her now. She was able to walk unaided. Such a proud girl.

She has came a long way.













 

 

 

"Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence." - Helen Keller