My Princess Danielle

 The theme for the Tea Party was one of Danielle's favorite cartoon character agent OSO.  This Tea Party was held last Sunday and happened to be a Easter Sunday. It was made possible from the 'Make a Wish' Team in Singapore. Whom organise and prepare all the food, drink and the decoration. It actually a mini celebration for Danielle. We wish for 'Lifting Hoist' that able us to transfer her from one point to another without having to the hurt the caregiver back. It came to a point where Danielle is just to heavy for us to carry her. Also not hurting her while transferring. We invited friend that been journey with us to the party. With their support, the journey with Danielle came much lighter. Also it the first time we brought Danielle to the dining table. Previously we were not able to do so as the height of the bath chair wasn't high enough. I did some modification to the height of the bath chair. So now she able to join us for meal together. T...

Beth, my elder daughter was so nice to read story book to Danielle. For me and my wife, this scene was priceless.

Extract from the press report SundayLife on 17 March 2013 Danielle has one of the most severe forms of spinal muscular atrophy from a missing gene. KKH says it sees three or four cases of such cases a year. Danielle is on a ventilator round the clock. And because of reflux," meals can get into the airways and into the lungs, and her lungs may collapse", says Ms Choong. This happened when she was eight months old. "One day, she vomited and food came out through her mouth and nose, and her lungs collapsed," she recalls, adding that she has been tube-fed via her abdomen since. Muscle weakness means she cannot smile but her eyes light up when she watches Sesame Street and Disney Channel cartoons in the family's five-room flat in Simei. In five years, Ms Choong and her husband were asked thrice: " Do you want to resuscitate her?" Mr Seah, who quit his job last week to look after her full-time,says they could not have made it so far without the help...

Its been two year that we have moved into our new place. But it our first time bringing Danielle out for walk and for her to know the neighborhood.  Previously the furthest was going to the playground just under our block. We were on our way to have reunion dinner with my father in law at his place which located few block away from us. Through out the short journey, Danielle was busy observing the surrounding. Will have to plan for more of this short journey.

  Somehow Danielle don't seem to be quite cooperating on her special day. She was angry when we disturbed her watching the show.  In a simple but meaning way we celebrated both Beth and Danielle birthday. This time Beth got to decorate her own and her sister birthday cake.

Just as we thought this year we will go through December without having Danielle to pay a visit to hospital - We were wrong. This was happen when my helper went for her 2 weeks home leave to celebrate Christmas with her family. There two admission in total and for the first admission was after a day my helper went for her homeleave. Thought to just to find out what went wrong with Danielle for sudden reduce in her diaper change no. from 4 to 6 change a day to 1 a day. This really made us worry and bring her to A&E for a quick check and not expecting for admitting her. She spend 2 night in the hospital to discover that she was seriously dehyated. After that a ew feeding regime was given to make up to the lost of fluid. She was back home in time to celebrate Christmas. But still not completely in her usual self through out the week. On the 29th Dec sat night, Danielle suddenly had a desat to 85% and we could not got the s...

As it was school holiday, we brought Beth to the newly opening Legoland at Malaysia. If u ask me as compare to our Universal Studio in Resort World Sentosa. I will said Universal Studio. The whole day , we were basically under the sun without shade. It was a cloudy day, with slight rain in middle of day. Okay, we can't ask for much as it the time being together as family. But at the end of the trip we were rewarded with a beautiful scenic,  a silver lining at the end of the Rainbow. see below picture. Enjoys!