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.

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.

There was a bit of delay in the morning for the schedule operation, it was shifted to afternoon 1pm and it was done by 3.30pm. This Danielle's new low profile GJ button replace her worn off high profile GJ button. As for trach area, the ENT doctor didn't find any unusual tissue growth inside her airway. Oh, Danielle lost one of her front teeth in this procedure, explain by the surgeon that her mouth wasn't able to open wide enough. Now she has no more front teeth- two front teeth lost on the last episode and this time one more. Anyway, she not using her teeth to chew food that how I came to the term.     

Danielle is preparing for a coming tea party organise by the hospital- Project Simile.Before this happen, Danielle will have to admit on coming wednesday to hospital to replace her worn off jg button and check the trach area. The replacement of the button has to be carry under GA and this shedule on thursday. Till then praying that everything will go well for this coming procedure.

Eversince Danielle did her trach last year Oct, managing her secretions is much easier. This mean lesser suction through her nose and mouth and it mean less trauma on her. As I recalled back the first look of her new look after her trach operation. Suddenly i recalled back the promises God revealed to me two years back- I'll give her a new face and new voice. That time I still wondering how she be able to less dependance to the mask. Last year due to the reflux issue that resurfaced again, she was hospitalised and intubating her was a tricky thing due to her narrow airway whom later ended up having to lose two of her front tooth. We managed to got her life back and just lost two tooth. So having her trach was the next thing. But then the ENT doctor stress that Danielle might not voicalise due to the trach limiting the air passing through the vocal cord. We prayer that this will not happen and when she awaked from the GA. Sound actually came off from her mouth and now that she mu...

This is Danielle second time drip herself into the water tub experience the weightless feeling. The last time we did this was when she was 6month old together with her elder sister. That time she was not so soft yet, that didn't require her to carry the diving gear into the tub. Seeing her floated up experience the weightlessness, really gave us great joy that all the effort are worth it. The best thing abt this tub is it is affordable ($190+$20 delivery), portable (with our tiny bathroom, we can make it stand to save space when not in use. http://www.portable-bathtub.com Thanks God for this tub :)

Due to her soft nature we have not been able to position her as the picture shown. Most of the time she is in the laying down position even though she has a serious reflux issue. Evensince, last year October after she did her trach. She has more reserve and getting stronger day by day. Thank You GOD for the healing and strengthen. Not forgetting all the Uncles and Aunties for praying for me.

Recently I came across this blog that the Mom- Maria Lin shares about her struggles of raising up a special kid. She shares about 7 things that you don't know about special need parent. 1) I am tired 2) I am human 3) I am jealous 4) I am scared 5) I feel alone 6) I want to talk about my son / its so hard to share about his son 7) I wish you would stop saying 'retarded', 'short bus', 'as long its healthy...' Through her sharing it made me feel that I am not alone as I can identify with those 7 things listed. click on this link to read more about her sharing.

Our orchid plant in the our little garden recently bloom with many beautiful orchid petal. It's a rare sight in our city area. It's our second rainbow sighting since we moved into our new place. The sighting of rainbow give us the assurance of the God promises of His blessing and provision

Lately we decided to install the cable tv in Danielle's room to allow more choices tv programme instead of the DVD disc we have been playing to her. This also created opportunity for my elder daughter to join in to watch the TV programme together. Little did we know that this created a bonding time for both of them. There was time where both of them not able to agree to watch the same TV programme. Danielle will protest by making loud sound and Beth will said- ' Meimei ( sister), you must shared. ' Both wants exclusive. Neither party will want to give in, but Beth being the big sister will eventually give in. Its a normal to has friendly fights between sibling. Watching the scene unfold infront of us, me and my wife felt heart warming. Having a sick child in the family, the child become the centre of focus and other sibling might easily be neglected. We recognise this and we get Beth to involve in caring for her sister. Giving her simple task like picking up things for Da...

While filming this video, she actually stopped moving her leg and contiune once I stop filming her or move the camera away. Her tolerating of being incline more than 10 degree had improved. Hoping in due time, she will be able to situp.

Through a friend who started the 'Rare Disorders Society (Singapore)' , we brought along danielle to support the first Rare Disease Day in Singapore. Held yesterday at the 'Raindrop@cafe' at the Scape.

Her hand coordination is getting better and it just matter of time she prefect the skill of clapping hand.

There are time where we rush to Danielle's room to the sound of alarm from the oximeter, later to find out that it a false alarm. From Danielle facial expression - we can tell that she seeking attention. Wondering if she figure out that the alarm from the oximeter really get everyone attention.

Eversince the mask was off from her face, she has lesses discomfort on her face. We begin to see more facial movement and her vocal has strengthen. There are time where we thought we heard a siren but actually it is Danielle complainting. We're still hoping Danielle will regain her smile back.

As a birthday present for both our girls, we brought them to the 'Singapore Flyer' on the first day of the Chinese New year. As it was a public holiday, the queue to the Flyer were long. So we check with the Flyer staff whether there any handicap access to the Flyer. After that, we were given a VIP treatment of skipping the queue of taking a straight lift to the Flyer. What I learn from this experience- No harm asking, you never know what you be getting out of it. Also all this year when we bring Danielle out with us. Where ever we go, there alway alot of attention given to us from bystander. We getting used to being the 'Super star' or simple term ' being thick skin'.

We held a mini birthday celebration for both of my girls who happen to be sharing the same birthday, Danielle turn 4 yrs and Beth turn 8 yrs old. As I recalled last year celebration, we held it over a chalet together with our family members and friends. But after the celebration, we had to made a trip to the hospital as Danielle sats sudden drop to 90%. After a chest xray was done to ensure there no lung collapase, we head back home.

My elder daughter beth made a unique spectacles for Danielle. Initially, when we put in on her it took her awhile to figure out. After awhile, i capture this precious moment.