My Princess Danielle

Danielle finally made it to her first homecare review at KK hospital. It been a month since her last admission to hospital. We had been postponing this homecare review for the last 3 times as she admitted to hospital. With this homecare review, it shows that Danielle is progressing much better. The next review will be 3 months later. In this review Danielle's physicians will come one by one to assess her. This is also the time for us to check with the doctor what we can do more to improve Danielle's condition. We were given the green light to wean off continuous feed except Dr Tan . We went ahead to wean off the continuous feed. We wanted to wean off continuous feed is mainly due to the cost, $300 per month for the milk bags and machine rental. The weaning process wasn't a easy thing to do because the feeding frequency were changed to 1 hrly feeds (for 24hrs), then to 2 hrly feeds (for 48hrs), then 3 hrly feeds. Among the 5 physicians, Dr Tan is right, Danielle can...

With much anticipation, we set ourselves with Danielle for a short trip at east coast park. It has been awhile Danielle go out for a sun tanning session. For the past few months, the only time she be out of home is to the hospital . We went to the far end of the east cost park where there is no crowd. We settle ourselves under a tree not far from the seaside. Beth plays sand castle with mummy, and Danielle watches us from a distance under the shade. We finished the east coast park trip with lunch at Carl's Jr restaurant . For the first time, we noticed strange look on curious diners. They must be wondering why on earth this baby is wear a breathing device on her nose and a meter device hanging on the stroller . Guess this is something that we need to ignore.

16Jan09 - 25Jan09 Danielle just turn one year old last Thursday. She had to spend her 1st birthday in the hospital due to her 5 th episode of acute brochiolitis . She caught a flu bug from Beth again. She stayed in ICU for 6days and High D for 4days. Upon admission to HD , she was immediately placed on high BIPAP settings. Her condition escalated within an hour after she was admitted to HD . She was moved to ICU as she may be intubated . I stuttered at the thought of Dan being intubated again, and I could not stop my tears of pain. Dan is truly a fighter, she fought her way through in ICU with high BIPAP settings and escaped from being intubated . Thank God for Dr Loh , Dr Chan and Dr Goh and the staff nurses! Dan recovered fast enough to join us for the reunion dinner on eve of Chinese New Year. We were well prepared this time for the discharge, so is Dan... We can see she is looking forward for home. Thank God for her smooth transfer from hospital to home, and thank God we don...

30Oct08 - 11Dec08 Barely 7 days after her discharge from hospital, Danielle was back to hospital for the same problem. We hesitated to bring her back, because we knew she had to undergo lots of needle poking. Without much choice, Danielle was admitted again on 30 Oct 2008. Both of her lungs collapsed . Little do we know that this admission turned out be a 30days stay in HD and 12days stay in ICU. A series of events caused her condition to worsen. Among the many stays in KK , this admission was the most difficult to deal with. Our emotions were like roller coasters and every day was filled with anxiety and frustration. Danielle's lungs kept taking turns to collapsed . There was no medication to help her get better, and Danielle had to depend on her own immune system. Despite the fact that Danielle was not doing well, she had to under go 2 tests: VFSS and pH probe study . The VFSS shows Danielle has swallowing problems, and cannot take oral feeds for the rest of her life. As for ...

12Oct08 - 23Oct08 On 12 Oct 08, Danielle was admitted to the hospital for the 1st time. I think she caught a flu bug from Beth. She stayed in the general ward for a few hours and High D ward for 11 days. It is the 1st time she had to do suction. I cried silently when the nurse insert the suction catheter into her nose and mouth to suck out the secretions. It must be a terrible feeling and caused alot of discomfort. Dan did not struggle or scream on top of her lungs, as she do not have the strength to do so. Big drop of tears roll off her eyes. It is also her first time on IV. The docs could not find her tiny veins, so there were several poke marks. My heart ache to see them. Since this admission, Dan never get to take her milk and solids through her mouth. She is on NG tube feeding . Dan was on CPAP and requires frequent suctions during her stay there. Praise God that Dan was wean off the CPAP machine and discharged with no equipment to bring home. We met Stacy and Sherry during ...

Jul08 - Aug08 Danielle did not reach her milestones. She still cannot roll over at 6 months and her motor skills are relatively weaker than Beth's (my 1st daughter). My maternal instincts told me something is wrong. One day while praying for Dan, the word "muscle" flashed across my mine... the same way when I prayed for her name... "Danielle" flashed across my mine. I called my church friend, E S (whom I know is a PD that time) and spoke to her about my concerns. God is so good, He knew that I will be going through a tough time with Dan, so He arranged for me to know this church friend. I didn't even know she is a geneticist until the day Dan is diagnosed with SMA . The very next day on 29 Jul 08, I brought Dan to the polyclinic, and straight away the MD diagnosed Dan with SMA . To him, the symptoms were very clear, trembling tongue with weak arms and legs. He ordered a fast track appointment to see a neurologist. My tears could not stop flowing for the r...

Danielle was born on the 22 nd of January 2008. Weighing at 2.4kg, with only less than 2 hours of labour and a little drama episode happened along the way. The drama started from seeing the gynae, back home packing and finally on the way to hospital. Dan is our second child and we thought were much prepared for it. She was born healthy just like a normal child... little do we know the journey ahead of her is so tough and painful... something we never ever expect to happen. Dan has SMA, a disorder that never happened in our family line. It is a total shock to us. She is diagnosed with SMA when she was 6 months old.