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.

Physiotherapy

My wrist was in pain for more than a week due to ganglion cyst. Something which comes and goes. Although there was no obvious swelling but the pain prevented my wrist from moving the slightest bit. I felt handicapped when things came to a halt especially when forced to skip therapies for C altogether.

Yesterday I found myself conscientiously following through C's exercises in an attempt to make up for lost time (or muscles to be exact).

We started off with weight bearing and stretching exercises for his limbs. C had no issues with kneeling but absolutely hated going on his tummy. Being on tummy puts him in a vulnerable, helpless state as he could not move nor hold his head. That would usually send him wailing non-stop.

C survived his sitting practice but the strain on his core muscles was obvious as he struggled to keep his body upright. Before we knew it, C was taking deep breaths and using his hands to steady himself with a little support from me here and there.

Our last review with C's team of doctors had them suggesting the use of chest brace to help with his posture to allow for proper lungs expansion and better breathing. As far as I could remember, C previous experience with the neck brace was horrendous. Being stubborn as a bull, I highly doubt he would tolerate the chest brace. Nonetheless, we will give it a try at the next visit to the hospital.

Till that time, it's therapies for him to keep him active, strong and healthy!

Magical Number Two

"The life expectancy of patients with Spinal Muscular Atrophy (SMA) Type I is generally considered to be less than 2 years." This typical prognosis, may no longer stands true given the early medical intervention provided to patients. Nonetheless, it is a significant milestone for most parents.

And C celebrated his second birthday a week ago.

Unlike the first, this year's celebration was kept small. Brick.inthebrickyard was very kind to bake for us on this important day. The dessert table was a visual treat and pleasure for our taste buds. I absolutely love the simplicity, colours and presentation. Something really great about them is that they bake for party of any size (even a small one like ours!) at very reasonable price. Do check them out.

Post by Brick. inthebrickyard.
 

We were honoured to also have with us, Annabelle from One-Stop No.1 Entertainment, who again generously sponsored the balloon wall for this special occasion. Annabelle has been with us right from the beginning of C's journey and we are blessed for having friends like her who stood by us.

 

 

Actually there were two celebrations - on a weekend earlier and on the actual day. Fruit cake with fresh cream courtesy of my sister & family and an ice-cream chocolate cake from Starpals - nurse Serene & social worker Siang Ping. C was especially happy with his ice-cream cake, amused and delighted that the cake was cold to touch. Siang Ping further amazed C with the smoke-like fog produced by dry ice in water. Oh boy, kids went gaga over it.

From lighting and blowing the candles, birthday song to cake cutting, C was seen grinning coyly. Those were the special moments that melted our hearts. Looking forward to your next birthday little man.

For other videos I have uploaded recently:
C learning how to count
C singing enthusiatically

Post Lunar New Year

Gong Hei Fatt Choy to all!

C made speedy recovery and went visiting with us this CNY. Visits were kept brief but purpose served - to reconnect with our families/relatives and to enjoy the festivity.

2015 has been good so far. The kids are relatively healthy and they get to spend more time together. Siblings rivalry is still strong, arguments between them rampant but both being older now means they back away from fights and give in more easily. That's an improvement.

Couple of months ago, we went into a state of worry when told that our girl was not performing well in school. The raise of this issue triggered off the red flag especially having taken a mental note of her inability to focus and other behavioural issues.

You see, we have 2 very special children in this household. They are direct opposites of each other in terms of physical abilities, temperament and learning abilities. These significant differences sometimes made it hard for us to disregard their differing pace in development.

Seeking help from a therapist has opened up my heart a little more and brought new perspectives. As the therapist had said, it's not all about academic achievements and having a child who is able to recite her alphabets and numbers (forth and backwards). What good does it do to have a child who is intelligent but fails to strive in a social environment? Or to kill a child's love for learning when pressured to conform to today's standards? It is important for parents to grasp that not all are built the same (there will be elites and there will be commoners). Setting boundaries/rules and having "punishments" in placed are a must to groom and guide a child but having done that, parents must come to understand that at the end of the day, whatever the outcome, your child needs to know that parents love them for who they are, it is ok for them to stumble and fall, to not live up to expectations and that they can go back to their parents for emotional support and acceptance. Building a relationship with your child is all that matters to ensure that they grow up as secured, confident, esteemed adults.

This got me thinking about C. When we were first expecting C, we spent a long time naming him. We wished for him to be knowledgeable, excels and performs better than his peers hence the name 闻越 was chosen. Indeed he grew up to be all that we asked for; an intelligent boy with a thirst for learning and advanced than most toddlers his age. If only we knew... then perhaps asking for good health would have been the wisest thing to do. It is only under circumstances as such, we parents get a reality check and come to realise that nothing beats a good healthy body. What would YOU ask for your child? Think hard and think twice.

Which is why our wishes for the year were kept simple - children to stay healthy, things to be smooth sailing and adults to take things in stride.

(Fast forward...)

Today is Rare Disease Day. This year, we celebrated the day with other special families at Bishan Park. Here are some of the photos taken:

Group photo of the families present

Hand-prints of Papa, Mama & Big C circled in photo

The Lam Family

Tomorrow will be another long day for us as we celebrate C second birthday. Stay tuned for more updates! Got to sleep now. Good night all.

Alamak!

For 3 weeks, we tried to keep C away from this bug at home. Cayla was the first to show symptoms i.e. occasional runny nose and cough. That went on for 2 weeks. First line of defence came down when Daddy fell ill. One week later, I conceded defeat. Our last line of defence was broken when C exhibited signs of choking few days back. Initially I thought he might have grown weaker over time thus the swallowing issues. So I had been monitoring him closely for other signs. None. No fever, no mucus, no coughing except after choking and he slept fairly well with a slightly lower O2 and higher pulse rate (still within acceptable healthy range).

Until Dr Chong came by yesterday, did a quick check on C. Suspected that C might be having a mild flu with no flowing mucus to hint that he's actually having one. Backflow of the mucus could likely have caused the recent 'choking and coughing' incidents.

This morning C was significantly weaker and lethargic. Last I checked he was running a fever. I can foresee that this will be a stay-home Chinese New Year. Hope C will get well soon for his birthday celebration in March.

Pay It Forward

We made a pledge to offer packed meals for the elderly during our Indiegogo crowd funding campaign. With Lunar New Year round the corner, it's about time we work on that promise.

We were linked up with St. Andrew's Cathedral Home for the Aged about 2 weeks ago. Our initial intention was to provide packed meals but the Home needed help with their weekly groceries so we thought might as well go with what they wanted since we had already set aside the budget for this.

Hubby was given a list of (ahem) 25 items to purchase. 

 

1) Chinese sausage x 4pkts

2) Yam x 4nos

3) Pumpkin x 4nos

4) Turnip x 4nos

5) Bitter gourd x 6nos

6) Eggplants x 8nos

7) Long beans x 2kg

8) Green leafy vegetables x 2kg 

9) Tofu x 10pks

10) Cabbage x 4nos

11) Sambal belachan x 3bots

12) Pineapple x 6nos

13) Ginger x 3kg

14) Tomato x 1kg

15) Chilli padi x 200g

16) Dragonfruit x 15nos

17) Chicken sausage x 8pkts

18) Herbal packet for soup x 10pkts

19) Dried longans x 4pkts

20) Potatoes x 5kg 

21) White fungus x 3pkts

22) Broccoli x 2kg

23) Arrowhead x 2kg

24) Small limes x 2kg

25) Garlic x 3kg

Hubby roped in buddy to help with the logistics. So off they went with the entrusted list this morning (honestly I was a little worried whether these 2 men could do proper marketing lolx). I shared this list for only one purpose - to commend Hubby and Jason for their efforts 'cos the picture below didn't do justice in showing the sheer amount of food these 2 men carried. Hubby said both of them made 3 trips (walking and carrying these food) from wet market to car and 2 trips from car to the Home just because they had to park far away.

 

Anyway the food was delivered along with a red packet so they could purchase the Four Season Lime plants which they wanted but we couldn't manage logistically. Overall I must say it's a wonderful job done!