A Warning

From the time we had received the trial BIPAP machine till the time the new machine was delivered, masking C was often met with difficulties, either he was unwell or something just had to break down. For that reason, we had decided that C could enjoy a little more days of natural sleep without machine intervention through careful monitoring. He was doing very well for the longest time I could remember. Drops in SpO2 were rare.

Friday night was different.

The first alarm was triggered before midnight. Oxygen saturation on the oximeter read 84% and it continued to dip by the second - 83, 82, 81...  77, 76, 75...

In the past, C lowest SpO2 was at 72% so I wanted to prevent it from reaching that. I began to gently stroke his chest hoping to wake him up from deep sleep (usually my touch would wake him and send his pulse rate & SpO2 back to normal level). This time, no response.

70, 69, 68... the drop did not stop. Worried, I hasten to wake him but to no avail. I grew desperate and started calling and patting him. My gaze were going forth and back, on C and on the dreadful numbers reflected.

62, 61, 60... finally, C stirred and I breathed in deep for the first time. His SATS started climbing and things were soon back to norm. I did, however, noticed that his pulse rate was fluctuating and SpO2 was at a lower than usual 96%.

Few minutes passed and the alarm sounded again. Two more dips ensued. I then alerted hubby to be on standby while I changed a new sensor probe to ascertain the erratic readings. I had the BIPAP and mask ready too. Things quieten down for the next hour and just as we thought it was over, the cycle started again (even though the drops were not as drastic). By the sixth drop, we were ready to mask him. C usually fights hard when on mask but this time round, he fussed only because we shifted him. He went right back to sleep shortly. No more beeping and no more heart-stopping moments.

Tonight, even though C is doing better but I do see slight drop and decided that he should stay masked. Wondering if it's the Monday jab at the polyclinic which is making him weaker?

Anyway, shall continue to do my night monitoring and I do hope tomorrow will be a better day.

Caelen Loves To Talk

Having seen how intelligent and creative Cayla is, we naturally held high(er) expectations for C. His diagnosis hit us hard and destroyed much of our wishes for the future. Ironically, C turned out to be quite a talker and that quickly filled the voids in our hearts and rekindled hopes.

C is currently obsessed with cartoons, balls and books. He loves to read and would tirelessly flip all of Cayla's books, one after another. He participates actively by spontaneously repeating some of the words we narrated, exhibiting a huge sense of achievement whenever he does that. What's more amazing is that C speaks to us in almost complete sentences (right from the beginning when he started talking at 1yo) and addresses himself as "我". How many 1yo child does that really?

Being a curious and eager learner, C expanded his list of vocabulary quickly. And this proud mama here just could not stop herself from sharing how much C has learnt so far.

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Baby / Ball / Balloon / Banana / Bear / Bird / Blow / Book / Bottle / Bubble / Bye Bye / Car / Chair / Close / Cover / Dog / Doll / Door / Duck / Egg / Hello / Hold / Jump / Knock / Milk / More / Monster / Morning / Night Night / No / No More / Open / Shoe / Sticker / Tap / Throw / Tiger / Turtle / Walk Walk / Want / Water

Donald Duck (Character) / Elmo (Character) / Gai Gai (Jalan Jalan) / Mickey Mouse (Character) / Moo Moo (Cow's moo) / Mouk Mouk (Character) / Mum Mum (Makan/Food) / Ng Ng (Poo Poo) / Orh Orh (To sleep) / Peppa Pig (Character) / Pers (Pampers/Diapers) / Pong Pong (Shower) / Quack Quack (Duck's quack) / Toot Toot (Pacifier) / Uh Oh (Oh No) / Wah! (Amazed/Excited) / Woh Woh (Dog's bark)

我要这个 / 我要那个 / 我要抱抱 / 我要拿 / 我要看 / 我不要 / 我要吃这个 / 我要milk milk / 我要喝水 / 我要去walk walk / 我要戴 / 粉 / 喂 / 眼镜 / 服 (衣服) / 丢掉 / 睡觉 / 爸爸 / 妈妈 / 姐姐 / 嫲嫲 / 爷爷 / 姑姑 / 公公 / 婆婆
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Below is a clip showing his love for balls and demonstrating his ability to link words "throw" and "ball" together.

http://youtu.be/nf_z8jdm8as

Honestly, we do not have concrete plans for C yet. But having seen his love for learning, perhaps it's time to consider the possibility of putting him in special school in the near future.

Weight Issues

It had been more than a month since my last post. Like many had said, no news is good news.

C had been well so far, no major concern except during our last visit to KKH, Dietitian commented that he was underweight. Being his caregiver, I knew this was coming. We had been desperately trying to improve on the situation for a while now. C was also probably going through the "milk and food strike" growing-up phase. His milk intake took a plunge for no particular reason and was just more interested in play than food. Otherwise he was all well and happy.

The changes expected from us?

• Need to add more cooking oil in his food and milk (maybe I'll skip the milk part. I honestly did not want to upset his tummy or cause any indigestion)
• Need to meet the minimum 150ml to 180ml per milk feed, 4 feeds a day (I faced problem in squeezing in 4 feeds, 2 meals from 7am to 9pm. What could I do if C refuses to drink?)
• Need to switch from giving blended to soft chunkier food (Didn't they last advised me to continue with blended food as tolerated? Why risk choking on foods he cannnot chew and swallow?)
• Need to stop syringe-feeding him water and to use a straw / cup instead. That way I have better control over how much he drinks (fact: syringe gives me more control than letting C drinks from a straw or cup).

That did not go down too well with me because they were adding on issues on hand instead of offering solutions to my problems. I'm just going to try my best, stick to what works best for C.