My Princess Danielle

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!

4 years ago during this period of time, Danielle was just 11month old and she recovering from her lung infection. For that I would never be imaging or dream that one day we will able to go tour together as a family. Last weekend, we brought Danielle and ourselves to a 4 days 3 night cruise together with other parents from Club Rainbow . There were about 500 of us. As there were Doctor and Nurse came along to this trip, should there be any medical needs they were there for us. Somehow Danielle through out the trip wasn't feeling comfortable. Most of the time her pulse exceed her usual but sat is normal. She spent most of the time sleeping and this really unusual. After a quick check on her by the doctor, he found nothing wrong with her. Guess she just not adjusting well to the new environment. This trip was a breakthrough for me and my wife that despite the risk and the logistics to bring along Danielle- WE MADE IT !  

Dear Laura, Happy Physiotherapy Day! Thank You for journeying with us the past 3 years. It is you that made us experts in care-giving for Danielle. We'll never forget how lost we were before seeing you. You helped us to be confident in stuff we do for Danielle and this in turn kept us moving on. You lightened our burden and load so much, and most importantly reduce or eliminate the discomfort and pain Danielle had to go through, improves her quality of life, which in turn reduce our family stress. Thank you for being with us. You made a difference in our life! May you be bless richly ! Warmest Regards, Frederick and Rebekah

Just not more than 2 month of usage for the new JG low profile button , the balloon that prevent the button from coming out suddenly burst over the weekend. Which mean the tubing might come out of the jeurnal . After experience the last round of the button balloon bursting,  we gave feedback to the hospital that this process of replacing her tubing should be treated as emergence. Cos Danielle case of replacing her JG button abit complex as she required a operating theater, undergo GA and using a scope to guide the JG tubing into her jeurnal. This time round we were well prepared. We admitted her into the Accident and Emergence Department in the evening and the next morning she being schedule for the tubing replacement procedure. After the replacement of the JG tubing was done in the morning, with few hours of monitor her condition and she was discharged from the hospital in the late afternoon. All this were not made possible without the prayer covering from our cell gro...

Last week over the holiday we meet up with Amelia's family over their place for a dinner. Amelia is 6 year old, At the moment there no diagnosis why she couldn't sit up or not having any facial expression. Doctor see it as Neuro degeneration. Through this meet up, both family were able to share  information and encourage each other in our journey with our special need child. Amelia also has a elder sister and together with my elder daughter Beth, they were able to play together.  Such pleasant scene to see them playing together.

In the last few weeks, Danielle had been waking up in the middle of the night and just couldn't get her back to sleep till morning. We are clueless of what to do and when we brought it up to Danielle's Physiotherapist. She narrow down to her hip which made more sense. We knew all along that due to her degenerative disorder which effected her muscle. Her hip had little muscle to support her leg and this will cause pain and sour when she lay at her side. All we can do now is to relieve her discomfort. We try out a special mattress that had the purpose of pressure relief and place more bolster at her hip area. We also try hanging her leg which relief the leg pressure on the hip. We will monitor and hope this method with ease her discomfort and in return we can have more sleep.

After a waiting of 2 week, we received Danielle's new ankle foot orthotic (AFO), of all her AFO this one is the most colorful we have made for her. But it do come with a price, it cost 3 time the price of what we used to made for her. AFOs used to support wasted limbs, or to position a limb with contracted muscles into a more normal position.