My Princess Danielle

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.

Danielle won a xylophone in the project smile event being the best dress up child (actually all the kid that came for the event were best dress up winner) . Anyway, in daddy view both of them, Beth and Danielle were best dress up. We can't wait for her to try out the new toy and same goes to her in music making.

This afternoon we attended the 'Project Smile' organised by Rae and the hospital and this was the 4th year running. This tea party was specially cater for the hospital homecare patient and their caregiver. Both of my two daughters dress to the occasion of being the princess belle. It was a time fun with ballon sculpture, face painting, performance and family photo shoot. But most of all getting to meet up with other parent with special need child.