First Challenge

Our first challenge is here way too soon!

Cayla is down with a cold at the most inappropriate time with Chinese New Year just round the corner. We risk having to sacrifice visiting and most worrying of all, risk passing on the virus to Caelen. He last fell really sick during Christmas, had a high fever and 2 weeks of persistent cough. That weakened him so much that he lost the ability to sit.

I have been up frequently the whole of last night to check on his breathing and temperature. The cold weather of late didn't help either. I noticed that his nose (breathing) sounds slightly stuffy. Gosh, I really hope we can tide over this. Please let him be well. Life is already so restricted so please don't deprive him further of his first CNY with the family.

Family Day

On my blog, you would find a wish list - things we wanted to do with Caelen and our hopes for the future. We made the effort on Sunday to fulfil one; took the children kite-flying on the field next to our house. The weather was fine and breezy. 'Jie Jie' (aka big sister) Cayla was ecstatic and couldn't hide her excitement. Caelen on the other hand was a little fussy about the heat but kept interested nonetheless by the burst of activities around him. This was our first kite-flying attempt, although there were glitches along the way, we managed. Might just consider doing it again when the children are up to it :)

 

"True courage is like a kite; a contrary wind raises it higher" - John Petit Senn

True courage is like a kite; a contrary wind raises it higher.
Read more at http://www.brainyquote.com/quotes/authors/j/john_petitsenn.html#7vq6A1B6msXDrCZr.99

Cayla is 2.5 years old now. As you can see, she's a bubbly, mischievous little girl, constantly up to something whereas Caelen is the gentle, sweet little boy who never fail to melt anyone's heart with his charming smile and personality. We kept their age gap close so they could grow up as playmates.

As far as Cayla is concerned, she is too young to understand the grave condition he is in. She naively believes that a trip to the doctor will make her brother well again. If only... wouldn't that be great? It is heart-wrenching to know that Caelen will never, in his lifetime, walk on his feet nor chase after 'Jie Jie'.  It breaks my heart further to know that my child is forever stuck in a broken body. When it comes a time to make difficult, life-changing decisions... how would I decide for my child then? To let him go or to make him stay... how will I ever know his pains if he is never going to speak to me, if he is never able to show his emotions on his face?

Life's Simple Pleasures

Caelen had Char Siew Pau, fruit yoghurt and baby crackers today.

SMA children are deprived of simple pleasures in life. They often lose their basic abilities to eat and breathe at a tender age.

Caelen is privileged to be able to do so but not for long. Every milk feed, every meal carries a risk of him choking, of getting water or food into the lungs, that alone can lead to serious consequences. Despite that, we want Caelen to appreciate the joys of eating.

Symptoms

For the first time post-diagnosis, he choked, struggled to catch his breathe and vomited some of his feed this morning. Shortly after, he was seen smiling away, happy fiddling with his toys again.

Sleep Deprived

We failed to hook Caelen to the Oximeter on the first night. The beeps from the machine kept him up and he hated the sensor that was attached to his toe. After battling with the cranky sleep-deprived baby for over an hour, we decided to drop the experiment and let him have a good rest.

We had better luck the next day. Caelen was totally exhausted after skipping his naps in the afternoon. We hooked him up with ease soon after and so our 2-day data collection mission begins...

The Devastating News

Along the way, there were tell-tale signs telling us that something was not right:

• Not kicking a lot
• His grasps were weak
• Poor head control
• Cannot put weight on his legs
• No sense of balance
• Slow/late in meeting milestones

That had led to a lot of questioning and thus I began researching on the internet. I chanced upon a medical website which document case studies on infant-related disorders. It showcased a library of pictures and videos of children with various conditions like SMA, Prader–Willi Syndrome, Scoliosis, Cerebral Palsy (CP) etc of varying severity. Unfortunately, this site was no longer available when I returned for more information. Nonetheless, I concluded that Caelen had Global Developmental Delay (GDD) or SMA.

The subsequent events were a blur. That included numerous trips to the Pediatric Neurology, Polyclinic and Rehabilitation Centre. While Caelen was scheduled for 8-9 different clinical tests, he was also seeing the physiotherapist, occupational therapist and speech therapist to help with his motor skills development.

The wait for the tests results was painful. Within first 2 weeks, results for minor tests all came back negative. We were pretty hopeful then. Until an unexpected call from the hospital requesting to meet despite that there was a pre-arranged appointment 2 weeks later for the release of the remaining - genetic test result. Sensing something not right, hubby and I prepared ourselves for the worst but not for what's to come.

Caelen was diagnosed with Type 1 SMA and we were told that he would not live beyond two years old. The reason why this came as a shock as we had expected a 'Type 2' verdict since he met some of his milestones. Apparently not.

Our world came crushing, our hearts were literally broken and what followed was an emotional roller coaster ride.