Second Challenge

In March, Caelen went for a series of follow-up appointments with various doctors. Here's an update:

• Respiratory - Sleep Test results showed overall oxygen level at 93% (less than ideal of above 95%). Lowest oxygen level at 73% (frequent drops observed). Usage of a BIPAP machine during sleep is necessary to improve his breathing.
• Chest Therapy - Senior therapist checked and noted that he is not using full lungs capacity to breath.
• Physiotherapy - Weak trunk and limps. Need to continue with therapy at home to at least maintain and hopefully improve his strength.
• Occupational Therapy - More than satisfied with his fine motor skills and cognitive development. Praised that he is a smart boy and is able accomplish complicated tasks suited for older tods.
• Feeding - Doctors were concerned as he was no longer chewing his food and he seemed to have slight problem swallowing. Caelen was thus scheduled for a videofluroscopy early next month. Doctors also noted that his weight is not climbing as much as it should and I was ordered to thicken his milk as well as putting him on Valens Carborie.

After numerous trips to the hospital, Caelen came down with a fever 5 days ago with no other symptoms. Kaelyn's daddy and mommy (another special family) were kind enough to come check on Caelen (to ease my worries) and loan us their portable oximeter for monitoring his condition. That very night, Caelen's temperature shot up to 40 degrees with heart rate at 213, his vitals triggered the alarm. Drowned in the beeping of the machine, hubby and I sponged our boy for close to an hour, finally bringing his temperature and heart rate down to desirable level. Miraculously, his fever was completely gone the next day.

Caelen subsequently developed a cough in days that followed. We started putting him on BIPAP to regulate and aid his breathing. He cried incessantly each time we hooked him to the machine, we even tried to calm him by playing his favourite videos. Unfortunately, he vomited on different occasions, with one particularly bad that he erupted like a fountain. That I'll need to check with his respiratory doctor on the cause.

For now, his MMR inoculation this week had been postponed. He is on BIPAP (during sleep) for as long as he could tolerate. Otherwise, sometimes I think he fared better without.

Caelen Is One!

Overnight Sleep Test at KKH

On 28 Feb, Caelen underwent a Sleep Test at KKH. This test is often conducted for patients with sleep apnea or related sleep disorders. However, in the case of SMA patients, it is used to identify their sleep patterns, access respiratory functions and to also understand how the changes in airflow and pressure aid their breathing while asleep.

In order to take detailed readings of the above mentioned, technician needed to wire him up to a few machines. Took us almost an hour and a half to complete this delicate task with Caelen screaming and crying the entire time (not a great experience). He continued to protest for the next hour that followed, leaving me emotionally and physically drained. But the night ended well with him knocked out, totally exhausted.

We celebrated Caelen's first birthday cum fundraising the Sunday that followed. It was the best celebration ever and fundraising was a success! All these not possible without the help from families, friends and lovely people.

Heartfelt thanks to:

1. Mr Rahul Sharma & Ms Beh Hui Shiang the venue sponsors (very lovely place) for this party
2. Ms Isabel Lee-Shorrock the resourceful planner who has helped in ways I could never thank her enough
3. Many friends who came and helped out with the logistics and setup
4. Families and friends who came for the birthday party
5. All kind donors and supporters for the fundraising program

Special thanks to kind sponsors:

1. Mr Case Woo & Ms Tammy Sim for designing the 'Thank You' cards
2. Mr Tan Jit Khoon - Winson Press Pte Ltd for printing the 'Thank You' cards
3. Mr Bernie Lee - A'zone Corporation Pte Ltd for the customised Sesame Street backdrop
4. Ms Rena Tan & Partner - Sugarena :: Candy Buffet Stylist for the candy table of Sesame Street treats
5. Pan Pacific Singapore for the Sasha's Bears
6. Ms Annabelle - One-Stop No. 1 Entertainment for the lovely Sesame Street balloon sculptures and face-painting session
7. Mr Joe Lim - Wow Let's Party for the helium balloons & Elmo balloon bouquet
8. Mr Eisen - Birthday Party SG for the fabulous entertainment
9. Ms Samantha - Hey, Cupcakes! for the pretty and delicious Cookie Monster cake
10. Ms Renae Lim - Say It With Sugar for personally baking and decorating the Sesame Street cookies
11. Ms Vivy Toha for the organic Nutrifresh soya milk sachets
12. Mr Alex Pua - BellyGood by Tung Lok Group for the professional service and logistics arrangement

Finally, hubby and I did our first live TV interview with Channel News Asia AM Live today, a special arrangement by Mr Kenneth Mah of RDSS. For those who missed the live telecast, this is the link to the video clip http://www1.channelnewsasia.com/amlive/2014/03/03/interviews-rare-diseases/

Raise awareness, bring about changes and new hopes for all rare diseases patients.

Hectic Week

After a good long CNY break, it was back to the routine hospital trips. There were 5 appointments in first two weeks of February and an additional two end of the month.

Anyway, I absolutely dreaded these trips. There is always a high risk of Caelen catching something either from the train rides (plenty of peeps who refused to don a mask when sick) or from the hospital where all kinds of bugs and viruses lurk. Home is still the safest.

Well, this was Caelen during a mask-fitting session at KKH earlier, in preparation for his sleep test on the 28th as well as for the BIPAP machine which he'd be using at home very soon. I need not elaborate but it was not a pleasant experience for both of us. Endless crying and screaming was all I remembered.



Trying on a Mini Me

On a happier note, a few things to anticipate this week:

We will be celebrating "Rare Disease Day 2014" with other special families on 1st Mar at Furama City Centre Hotel, an event jointly organised by Club Rainbow (Singapore) and Rare Disorders Society (Singapore). This is open to public so please do support.

We will also be celebrating Caelen's 1st birthday on the 2nd Mar!! It's yet another milestone for my baby boy. How can we not put up the best for him? So here I am, working really hard to put things together and honestly, it's tough juggling work, family, babysitting, chores, hospital trips and organising an event. Hoping it will turn out just fine.

Before I go, here's another pic of my little one with his 3rd pearlie on the way. Better late than never! It's about time he grows some teeth. Cheers!

无私的爱

这是我心里的一些挣扎与无奈，对儿子闻越的那份爱。
我相信这也是一些特别儿童爸爸妈妈对孩子们伟大的爱。
 

“在你害怕失措时，妈妈会轻声说道安抚你的呼叫。
  在你痛楚落泪时，妈妈会忍住悲痛给你最温馨的微笑。
  在你彷徨无助时，妈妈会握紧你的手陪你坚强的走。
  在你意志消沉时，妈妈会在旁激励昼夜守候。

  你的一举手一投足，可能妈妈盼不到
  你的深呼吸你的眨眨眼，对妈妈最重要。
  你的呵呵笑你把妈妈叫，可能我再也听不到
  你别担心，我不会忘掉，宝贵回忆已深深在心里烙。
  我要你知道，前面的路好与不好，妈妈对你的爱有增无少。”

向许多爸爸妈妈致敬。辛苦啦！

A New Year, A Different Light

Year of the Horse has been good so far.

The Good:

• The annoying flu which bugged the family went away after stringent measures taken.
• Caelen has included "papa" and "mama" in his world of babbling.
• He recognises his favourite songs. Will laugh and clap along when these are played.
• He discovered the wonders of bubbles and tries poking them with his fingers during tub time.

The Bad:

• His phlegm is building up and been coughing more after his milk feed.
• He sweats profusely when sitting up during playtime.
• He drools more.

While Caelen gets to spend his first Lunar New Year with family and relatives. I, on the other hand, gained precious bonding time. This is the first time I looked at him and at things in a different light. And I came to learn that:

• He whom I turned away from never left me.
• He who fills my life with sadness and misery for many different reasons also fills my life with so much joy and love.
• He gave little signs and subtle hints along the way to help me comprehend that things happen for a reason. Some are destined to be and we just need to go with the flow.
• He made me see the silver lining when I am at my lowest. He let friends and sometimes strangers into my life at different juncture when I most needed help and support.
• I can't ask for a miracle if I don't believe in Him.

This boy is our little angel. Sent to us with a purpose. Here to accomplish greater things. There are more to life than money and career. Please do not lose sight of what is important in life. You cannot backtrack and make up for lost time. Caelen has changed my life completely and I hope he can change others' too.

 

Tomorrow is an important day. We will be meeting some new friends from RDSS to understand how families cope with SMA. It's our first baby step forward! It will be a fruitful meet. Can't wait.

 

 

P.S. I would like to express my heartfelt thanks to friends and anonymous kind souls who contributed to Caelen's CDA. Thank you and God bless.

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?