I Am Well

Suppose to do an update on how we celebrated SG50. Unfortunately my SD card was damaged and I lost all the photos and videos taken over the past 4 months. When technology and gadgets fail us, the impact is great as we are over reliant. Sad...

Past weeks, many had been asking about C after watching the show. I've spoken and met up with few really lovely, helpful people! I just wanted to say 'thank you' to all who got in touch.

C had been on continuous feed close to 1.5 months now. Making good progress so far. Digestion had improved and we had seen an increase in daily milk intake. His oral intake had gone up from 20ml previously to 60ml each feed. No doubt it's good he could tolerate more oral feed but anything he takes still poses a risk so we should never let our guards down.

Having said, C had grown significantly taller and slowly putting on weight. Im very thankful that he'd been sleeping well and staying healthy after the change and hope it continues to stay that way.

Let's enjoy a song by C!

A New Routine

Jan 2014 - 10 mths old

The first time C visited the Zoo was 1.5 years ago. Too young to remember anything. It was more of a must-visit-the-zoo-before-he-turns-one affair.

Last Saturday, we brought C there again. It was meant to be an educational trip. We thought he would be happy to see and name the animals he came to know through books and YouTube. It was also one of his very few trips out of the house in recent months.

Jun 2015 - 2 yrs old

Having glanced through my blog posts, I realised C had not been in the best of health and it was hard for me to acknowledge that his tiny body was failing him little by little. It was even harder to see how each episode took a toil on his body.

He is now thinner than before as he struggles with his milk feeds. C chokes and coughs bad due to reflux so much so he has problems keeping his milk down. It has also greatly affected his oxygen saturation, its lowest at 80%.

We have thus reduced the volume of each feed and started medication - Domperidone to relieve some of these symptoms but his oxygen saturation did not show much improvements over the last two days. In fact C began to show signs of dehydration - cracked bloody lips, changed in nail colour, tiredness, less urination, increased agitation, weight loss etc.

Hence this afternoon, doctor made the decision to put him on 20-hour continuous feed via milk pump. 100ml of milk is being pumped into his stomach over 4 hours, 5 times a day repeated over the week. In the next 2 days we will review whether continuous feeding benefits/improves C condition.

So far C has responded favourably with his oxygen saturation and heart rate returning to baseline. He no longer coughs as much and low grade fever is gone. With him constantly fed, though at a lower volume than his original daily intake but if well tolerated, we could slowly increase the intake to optimum volume (hopefully to see some weight gain in the near future).

The awful thing about milk pump? Carrying an additional machine plus milk bag around is definitely not too welcoming. It also meant that as long as C is on the pump (regardless of time, be it till 3or 4am), I need to be awake to help untangle the mess while he sleeps because the tube tends to wrap around him when he flip and toss. Not liking it at all for loss sleep.

Finally before I go, a quick update on Cayla's DNA results - she tested negative for SMA but has been recommended to go for therapy/counselling with the psychologist.

If Caelen's diagnosis has affected the adults badly then the impact on the siblings would often be greater as they are not capable of expressing and dealing with complex emotions (e.g. the disappointment of not having an abled brother who could run and play with her; not receiving equal attention as the brother, not understanding the reason why she has been robbed of the love and attention she used to be receiving). Hopefully with professional help, her behavioural and psychological issues can be better managed.

**For those who missed episodes of the 4-Part Documentary Series - 孩子,你慢慢来 Because I Love U, you can watch the videos here**

Story of Caelen on Television

Since November last year we had been filming a reality documentary with Threesixzero Productions and KKH.

《孩子，你慢慢来》'Because I Love U', a four-part series features the stories of five extraordinary families and their children with special needs. Learn how each family copes with the different medical condition. Be inspired by their love, perseverance and positive outlook as well as their hopes for the future.

Catch us every Tuesday, starting 30th June, 9pm on Channel U.

Uphill Task

Tuesday

C woke from his nap feeling warmer than usual. I thought nothing of it initially  He was his playful self but when he declined to eat, I grew suspicious. Grabbed the thermometer and it slapped me with three digits 386. Geez no symptoms, no change in baseline "Let's give him his feed and monitor further" I told myself.

Close to 3 hours later...

C acted strange. He grew quiet and laid very still. Repeatedly pursed his lips and told me "mouth very sticky". He made a feeble attempt to turn to his side, winced and gave a look of discomfort. His breaths were shallow, stomach bloated and heaving. I kept calling out to him but he gave little response. When asked if he was feeling ok, he shook his head. He seemed to be drifting away, with eyes half shut.

I went ahead to suction him. At least I thought that was the next logical thing to do. Within seconds of inserting the suction catheter, he threw up. On the bed. Loads of it. C broke the silence with his hysterical cries. I shouted for hubby and continued with the suctioning. Hubby scrambled for the toilet papers, threw loads of it to soak up the vomit and desperately doing his best to do damage control. So that was it. We spent the next hour clearing the mess and sent the boy to sleep at 11pm.

Wednesday

He slept through the night after a dose of paracetamol. Needed another dose at 7am and it went well for the day with just a low grade fever.

7.40pm... he cleared his throat incessantly.

8.15pm... he didn't seem to stop so I knew I had to help clear his throat. Brought him to the room and C gave me that same awkward look again. This time, with the new sheets and mattress protector, I didn't want to risk it. Placed him on a rubber mat before I proceeded with suctioning.

Nope I wasn't expecting what was to come (Note: last milk feed was almost 3 hours ago).

Suction. Vomit. Suction again (as I needed to clear the remaining vomit in his throat to reduce the risk of aspiration). Vomit again. O2 dropped to 90%. Suction again. Vomit again. O2 at 94% and not picking up. C cried and screamed. Refused to let me continue.

I was in a dilemma. Should I continue and risk inducing another vomit or call it a night.

So there he was, coughing, trying to clear his throat but failed. O2 was still not picking up. I guessed I needed one last suction (a swift one!) and I better do a good job. So the tug of war began. C fought hard. He sure didn't want another. In the end we had to do it by force. Flipped him to his side, daddy held him and I did my best to clear as much.

C is now asleep. O2 looks good at 98%. Fever came down on its own without medication. He is still at risk for aspiration. Shall see how he fares tomorrow.

White Flag

The thing about staying in Punggol is the huge amount of dust; tiny white specks that settle on countertops EVERY single day like icing on a cake except they do not delight and do not go well with my dark coloured furniture. And not to mention the sand particles that rendered my Magiclean useless as they are too dense to be picked up. Being dealt with such a situation everyday drives an OCD-me nuts. I am either drained from the extensive cleaning or drowned in frustration putting up with dirt.



1-day, 1-week and 2-weeks old filters

But the worst is its impact on the children's health. I find children in this area are more prone to fall sick, suffer from allergies etc. It is hard to ignore how much filth we pumped into our lungs everyday. C's bacterial filters for his BIPAP machine is a constant reminder. These filters meant to be changed every half yearly, I change them every week! The amount of dirt that accumulates is frightening given that he only uses his BIPAP in the night.

His bouts of illnesses for the past 2 months were probably aggravated by that. He had post nasal drip which caused him to choke and cough badly. He also had problems (still has) managing his secretions in the night while asleep. This combination was bad. It got to a point where he was coughing non-stop for hours. He was breathless and tired. It took a toll on his body as well. He had lost so much weight in a blink of an eye. His shoulders and knees crackle, his shoulder blades jutting out, I'm so afraid to move him around now, fearing I may break him.

His upper chest shrunk

Looking all boney and fragile

After 2 months of dealing with crappy days, I am totally exhausted. Last I checked (using a fitness band my hubby made me wear), I slept approximately 3 hours a day - 1.5hr deep sleep and 1.5hr light sleep. After that episode, I told him it's best not to keep track and I didn't need that to tell me the obvious.

So to sum it up... it has been a lousy period. Appointment after appointment for the next 2 weeks to follow. I hope I can keep up without collapsing.

Here's a throwback on C's PT session almost 1.5months back (yet another huge hurdle to get him back to shape):


 

Standing using a gaitor



What If Cayla Tested Positive?

My seventh draft. Still unable to put thoughts into words. Perhaps it was difficult to adequately describe how I felt in writing. I would try.

Since April, C was bugged by viruses. He was down for 9 days with a persistent high fever (39.8 degrees at its highest). On the 5th day we made a trip to A&E for routine blood and urine tests which he cleared. While on the road to recovery, came occasional episodes of desaturation and frequent choke-coughs. We were expecting another bout of illness but it did not come. By early May, desaturation returned with a vengeance, accompanied by a fever and cough. Last I checked fever spiked to 39.5 degrees. I hope we could get over this without checking in at the hospital.

That aside, what worried me was C missing an entire month of physiotherapy (PT). He seemed so fragile especially with joints that sometimes crackle when moved. His limbs and hips so skinny that they could possibly give way when force applied. Everytime it crackled, my heart skipped a beat and I literally sweat my head out in the next 15 minutes checking for signs of pains and jutting bones. I was so afraid of breaking him I have since refrained from putting pressure under his armpits, lifting him by holding the sides of his chest instead and quickly supporting his bum, worried that his body may not hold. This, a reminder to discuss with his panel of doctors on x-rays to be done during his next medical review.

Yet amidst these unsettling events, something weighs on our minds.

Following my earlier post, Cayla underwent a speech and hearing test during the same period. She was also assessed by a doctor at the Department of Child Development (DCD), KKH.
Doctor found her to have coordination issues and had to commence regular occupational therapy (OT). She explained that since C has a genetic condition, it was best that Cayla be tested for SMA as SMA of other types may sometimes manifest itself in many ways, in Cayla's case - poor coordination and muscle weakness. We were also told to watch out for signs of regression as an indication/red flag. Like I had mentioned prior, we were aware that Cayla had issues and needed help, though this did not come as a surprise, it wasn't easy to take in. DNA test has been scheduled for end of this month. Felt like deja vu and I am not liking the wait for the results (usually takes a month), that I'm pretty sure.

Today Cayla went for her first OT session. Feedback was poor - weak limbs, poor coordination, zero balance, weak core muscles. She requires more than once-a-month OT. Therapist suggested intensive therapy i.e. once a week for a month and to see her again 2 months later. To top it up, Cayla also needed PT which will be scheduled soon.

I did not know how the rest would take the news but for me it was simple - Cayla has been neglected for the longest time (due to C's condition) and she deserves the same (if not more) attention and early intervention to help her along. One thing at a time, one step at a time. We will get there somehow.

Be Free

We first met Kaelyn and family at their home in early February 2014.

Kaelyn was C first pal, a big sister and a fellow comrade in their fight against SMA.

We saw the children celebrate their birthdays, had gatherings at home and at events, celebrated Christmas together and fought infections in the same hospital ward bed to bed. I remembered how she persistently called out to C so she could see him from her bed. Little Kaelyn was vain too! Like any 3-year-old, she loved to get her nails painted, to wear pretty clothes looking her best. She was a late sleeper, C usually gone to la-la-land way before she did. She had always been the cheerful girl (last I remembered she didn't want to be called baby anymore) who's ever ready to show off her signature smile and blink blink eyes. Above all, she was a brave warrior princess who fought hard in all her battles with nasty bugs and monsters (maybe except for the purple dinosaur Barney which she so adores!)  =)

This loveable sweet pea earned her wings and is now in a better, happier place where she runs free.

Kaelyn, you brought joy and showed many what selflessness and love is all about. You came into our lives, gave us hope and brightened our paths. We are so honoured to have shared and built memories together for the past one year. Thank you little angel. You will be fondly remembered and loved always.