My Princess Danielle

The poem ‘my special child’, I extracted it from a blog written by parent of a sma child. Just like to share my personnel thought to this poem. Being a Christian and having a personnel relationship with Jesus make this journey much easy to go through. His assurance- ‘Every good and perfect gift is from above coming down from the father of the heaven lights, who does not change like shifting shadows’ James 1:17. What this mean- whatever the situation be it favor to us or not, all come from God. When you embrace what is coming toward you- joyfully, you will reap joy and if you embrace it with bitterness, you will reap bitterness and it come along with self-pity and doubt. I embrace it positively and God follow on to assure me that “For I know the plans I have for you, say the lord. ‘ They are plans for good and not for disaster, to give you a future and a hope’. Jeremiah 29:11” This is what it mean by blessing in disguise. There will be struggle and I can’t deny it. I still question God ...

Special Child by Sharon Harris You weren't like other children, And God was well aware, You'd need a caring family, With love enough to share. And so He sent you to us, And much to our surprise, You haven't been a challenge,But a blessing in disguise. Your winning smiles and laughter,The pleasures you impart, Far outweigh your special needs,And melt the coldest heart. We're proud that we've been chosen,To help you learn and grow, The joy that you have brought us,Is more than you can know. A precious gift from Heaven, A treasure from above, A child who's taught us many things, But most of all - "Real Love."

During her recent back to hospital, we manage to got the PT to custom made a foot splint for Danielle's feet. This help Danielle maintains the correct alignment of the bones in the foot and ankle. Due to Danielle's low muscle tone, her feet tend to develop " foot drop" - tightening of the foot/ankle muscles- no longer allowing free movement. It helps to slow the progression and allow proper alignment of her feet. With these, she is maintaining neutral position.

Just like to say few word to all the Uncles, Aunties, Jie Jie and Ke Ke. Thanks for your concern, with the love and care from my mommy and daddy , I'm growing stronger and stronger each day.

Praise the Lord that Danielle is back home and that she need not have to stay for too long in the hospital. In fact, this was the shortest stay she ever have (3 day) . Not that I wish she stay longer but glad that she have a speedy recover. This time round of admission, nurses that ever taken care of Danielle. All said that she have grow taller and put on weight. Glad to hear that as this show our effort to keep Danielle strong and healthy have pay off.

Just few day before the home care review, Danielle have another round of lung collapse and had to be hospitalise. After X-ray was done, the collapse was at the right lower portion of the lung. Good thing that we brought her in early, as we experience the last few round , any blockage to the lung have to be treated before something turn out worst. Prior to the hospitalisation, there a tell-tale sign the Danielle was not feeling well, heart rate goes above normal and body temperature was high. This morning will wait for the doctor assessment whether Danielle is fit to goes home. For those have been regular customer to the hospital will realise there a shortage of bed especially the high dependence ward. Doctor can't wait to send the patient home. Standing at their side, they creating more bed for others who might be needing it more than we do. Anyway, we don't want her to stay there too long if she is already feeling better and can be resting at home.

The present CPAP machine Danielle is using had a serious issue that we really need to address to it. I manage to come out a solution and address to the issue without much cost and simple to install. If you are a CPAP or BiPAP user, it may be great help as I elaborate more. Presently, we are using Isleep 10 CPAP machine that does not come with a inner backup battery. In event there a power failure or the air supply cut off, the machine will not alert the surrounding people about it. Until the child complaint or the oximeter pick up that the O2 level drop below 95%. This mean a lapse of 15 to 20 minute depend the child tolerant level. It happen to Danielle that when we brought her out and along the way the CPAP machine just cut off by itself- the power adapter came losses or accidentally we press the on/off button. Somehow those things that never come across our mind happened. There one night while we are sleeping and there a power trip for no reason. Good thing that i install the alert ...