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

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

Back to normal

It has been a while since my last update on Evelyn. She had been doing really great after her leg fractures (July-Aug). She was able to return to her normal activities gradually.

Dr Mary Peterson-Suri is one of  OI parent in the US. She had volunteerily formed a charity group called "hear-to'heart" that help in sourcing, collecting and sending special need equipment around the world. I requested a walker for Evelyn about a month ago before her leg fratures. To our surprise... the walker arrived just on time after her fracture recovery.  This walker helped Evelyn walking around the house.  A big thanks to Dr Mary and the OI Parents who have been so supportive and helpful along our OI journey. Look at her, walking with confidence!

Apart from the medical walker, we have also sourced some fun toys that helped her moving around.


She loves her stroller

There are also few toys to be acted as her mobility tools around the house.



Playing kitchen utensils using her toy giraffe as a mobility tool

Evelyn had progressed really well over the last few months. She was able to climb staircase

Great improvement!!!

If you work hard on something, great thing will happen" - Neal McDonough

Evelyn weighed at 27mo : 7.6kg, 77cm

First leg fractures

Right leg fractures - long cast for 3 weeks

We are so happy seeing Evelyn's latest milestones - she can walk with our one hand support (was 2 hand support, or with furniture support). Unfortunately, the happy moment do not last longer.

While we were celebrating her new milestones Evelyn fell down from standing position and broke her right leg. She sat on floor with her right leg stiffed and cried abnormally. When we tried to move her leg she did not want us to touch on it. Were were totally new in handling in leg fracture. We rested her broken right leg on a wooden board before heading to the pediatric emergency. An xray was ordered to see how the fractures look like. It was a  heartbroken news again - she has had 2 bone fractures.






Bruise around fracture area



Right : Displaced distal tibia   Left : Displaced mid shaft fibula


On the 6 Aug, the long cast had been removed, but her leg was still swollen. She was still in pain and cant bear any weight either. She wanted to get back to her mobility but it was not easy as before.

We pray hard for her speedy recovery.

The bravest sight in the world is to see a great man struggling against adversity 

Evelyn weighed at 26 mo : 7.3kg, 77cm

New milestones

Evelyn has tremendously progressing since she started pam treatment from 19 months old. Her confidence level has gradually increasing. She has been bearing weight with her legs and she can stand/ walk with support since then. 



23mo - First introduce a walker, only took 2 steps with it

24mo - New mobility toy. She loves it so much!

25 mo - walking with support

25 mo - standing with a little leaning support

25 mo - walking with chair support

This may means nothing to an average child, but it meant a lot to us in a this rare journey. Evelyn has came a long way in achieving those milestones. Although it was a slow long process but she did it finally. We were in tears seeing her walk with the little chair.

We celebrated everyday for her milestones achievement and appreciate every single fracture-free day.

"Never give up on what you really want to do. The person with big dreams is more powerful than one with all the facts".

Evelyn weighed at 25 mo : 7.2kg, 76cm

Evelyn is 2

Time has passed by so quick. I cant believe that Evelyn is 2 now.

The past 2 years was terrified, from the moment the pediatrician told us her deformities, followed by her OI diagnosis, then the knowledge on how to care OI baby, her developmental delay, the frustration we have dealt with doctors, therapist, orthotics, specialist, physical therapy (PT) training on our own, pam drug treatment/ doctor appointments routine, and many more. OI is really a scary thing. There are lots of uncertainties so we really don’t know what to expect next. Her scoliosis (spine curve) is the most scary diagnosis, from zero degree at birth to 38 degree at 18 months old in S curve, and yet the doctor said it would be a progressive curve - this is something bad to hear. We have no other option but to live with it and accept the way it is.

We were told that she would never walk - but just recently (22mo), Evelyn started to cruise furniture with support, pull to stand with support, stand/ walk with support. Her daily PT is something that we cant be ignored, because every little effort do helps. We are hoping that she keeps progressing and gets stronger each day in meeting her major milestones. A good quote from Master Zheng Yan "Never under-estimate yourself, because human have unlimited potential". We are proud of her learning attitude, shes love learning and keeps learning everyday. She discovered fun in learning. We truly believe that she would do better in her path with her own way.

To Evelyn :" On the 23th May 2011, you enter into our world and our live changed forever..... You teach us to be strong, be patient, be brave, be happy, be positive, be gentle, be calm, be broad-minded, be courage, be energetic, be loving, live life to the fullest, and more importantly - appreciate small little thing in life. Your change to us is just countless, and we are what we are now to be a better person". WE LOVE YOU FOREVER!!!

We celebrated her birthday 2 weeks earlier with my family together with mother's day. It was a great party, we enjoyed ourselves very much.

Look at her birthday cake & presents - She was excited!!!

Birthday party with her girly cousins

Here is a video clip I created for her to recap from birth to 2. Enjoy!

Evelyn weighed at 24mo : 6.95kg, 75cm




Backlog journals - Scoliosis



 

Front view of Evelyn's leaning to her left



Human spine made up of vertebrae, a normal vertebrae is in a cube shape, There are 7 cervical vertebrae (C1 to C7), 12 thoracic vertebrae (T1 to T12), and each connects to the 12 pairs of ribs. The lower spine made up of 5 vertebraes called lumbar spine (L1 to L5). So when all cube shape vertebrade line up straight it becomes a straight spine at front/ back view. One of reason for scoliosis associated with OI developed is because of vertebrae loosen liagaments (means the vertebrae in between is loosen os they cant connect firmly to each other).  Evelyn has 10 triangle-shape vertebraes (T1 to T8), (L1 to L2)  that made her spine cant stand straight. Her upper spine curve to the right made the right ribs twisted to right up; the lower spine curve to the left made the left ribs twisted to left down. It is a very complicated S curve. We are hoping that pam drug treatment could help to strengthen the triangle-shape vertebrae so it would not get collapsed further.

Evelyn tends to lean her body to left side due to the twisted right up ribs, and twisted left down ribs. She received her back brace support since 20 months old. .  The brace is to support her body posture so that she will have a straight body and to avoid leaning to either side. It needs to be wore 24/7 no matter what position she is in, ie: sitting, standing, walking, sleeping.

Evelyn on her brace, with this brace she cant really move her body in sitting posture, so we let her stand with support



Back view of Evelyn's spine curve, upper T1 to T8 twisted to right up resulting the right shoulder to be uneven, lower lumbar L1 to L2 twisted to left down.



Once Scoliosis associated with OI started to develop, it will not be straighten by itself. A mild curve can be corrected through brace or pam treatment or therapy. A curve > 30 degree needs to be monitored closely; it is highly likely the curve will progress rapidly. The brace is not for spine correction, but to help to prevent her curve progression. For curve > 50 degree, surgery maybe required if the internal organs such as lungs and heart are affected by its function.

Evelyn had 37 upper degree curve at 18 mo. They had never seen this bad curve at such a young OI toddler. Her lower spine curve was less than 10 degree, we have been praying for the lower ones to stop progressing.

almost meal time

"Happiness is to stop worrying things beyond our control"

 

Evelyn weighed at 22mo : 6.8kg, 75cm