Christmas Eve

Yes! We have a chair for Christmas!! It arrived on 23 Dec, the best Christmas gift for C ever. Thank you all for making it possible.

Engrossed in his games on tablet

Little boy now spends a fair amount of time on his chair in the day for various activities e.g. drawing, playing games and toys, meals, reading etc.

See how it actually fits in our (very squeezy) room and love the fact that it's slim enough to maneuver to different parts of the house. If you also noticed,  C's head is barely touching the headrest, leaving plenty of room for growth. This chair is definitely going to last us for quite a while.

This year instead of keeping to the usual stay-at-home Christmas, we have decided to throw a small party. Gone is the 1.8 metres tree. I reckoned that it's going to be more of hazard than pretty display. This has thus been replaced by a petite 1.2 metre neat looking one which complements the gingerbread house that I painstakingly painted over the last 2 weeks. Can't wait for the party tomorrow! Will definitely update with more details after the event.

Here's wishing all a blessed Christmas filled with love! Oh yes, C wishes everyone a Merry Christmas too!
(In case it doesn't load, you may view video at http://youtu.be/WwNkSky2Atc)

A Month Full of Love & Sharing

December is my favourite month of the year. It is a month of celebration, sharing of love and gifts. It also marks the end of a long eventful year and the beginning of a brand new, better one (don't we all wish for that huh?). A happening month means more to cover. Therefore, I shall keep my entry short (finger-crossed).

Little C was warded for the 4th time this year on 26 Nov 2014. Oxygen level was low accompanied by a chesty cough and high fever. It was a short 2-day stay but an unforgettable one. I was startled by two familiar voices in the high D ward at 3.30am. For a moment, I thought I was dreaming and disregarded it. Seconds later, I heard a familiar name and the same voices in the background calling out in distress. It was C's pal, Kaelyn, in the same ward just a bed next to us curtains drawn. It was a tense moment, I felt absolutely awful and I wish never to have to go through it again. I was glad Kaelyn and C made it home in full recovery.

Moments after C's story was published in the papers, a NYP student wrote to ECDA on our behalf to find out the possibility of providing an education for C.

Hubby and I saw a high level of maturity, sensibility and initiative in this young man and found his action admirable. We need more like him don't you agree? That will make a lot of difference to this not-so-pretty society I see today.

Meanwhile, we have also received messages from the public offering to help C in unique ways. Some offered to provide free clinic consultation and others healing therapy. A lady wished to dedicate a section in her retail outlet to sell my bento tools/accessories just so I could concentrate on caring for C and  not keep myself busy attending to business queries and sales.

How very thoughtful of these folks!

Their 'loot' - toys, books, stickers and cake

Just last week, a kind gentleman, Mr Loh, took time off work to bring the children Christmas shopping at Toy 'R' Us. Cayla was over the top excited, ran all over the store, grabbed every boxes of toys she fancied >_<|||

Poor daddy mommy were busy distracting her and returning the boxes to their original places. At the end of the day, all I could say is that Mr Loh made the children very happy. They hardly get the chance to do a shopping spree (neither do I hahaha, kiddin').

Been 2 years since we last had a Xmas tree

There were also 2 beautiful ladies, Lynda and Shirley, who came by our place to visit C. They brought me lunch & coffee, presents for the children, books, Christmas tree and accessories. It was our first meeting and I was overwhelmed by their generosity. They stayed to set up the tree and kept C entertained. The finished project - simply beautiful. I even bought a Gingerbread house to complete the look. All I need now is to finish painting the house.

To Mr Loh, Lynda and Shirley, you brought light and love to our home, brought joy and put smiles on our children's faces. We thank you for making a difference to our lives. I hope our relationships will blossom into long-lasting friendships in time to come.


While updating this blog, the funds from Indiegogo campaign has came through.
The breakdown of the total funds raised (all amount quoted in SGD) is as follows:

Indiegogo campaign - $14,288.11
Cheques/bank transfers - $5,610.00
CDA - $1,500.00
Grand total - $21,398.11 (as of 10 Dec 2014)

Here is how we wish to utilise the funds:

Tomato chair - $3,390.00 (still waiting for delivery)
Cough assist machine - $6,527.00 (recommended by therapists during C's hospital stay)
Buggy for Kaelyn - $3,500.00 (to help a fellow RDSS family purchase a machine)
Blessing for Danielle - S$1,000.00 (to help a fellow RDSS family with consumables)
Pledge a meal - $500.00 (this will cater more than 60 packed meals as initially intended)
Remaining funds - $6,481.11 (of which $1,500.00 is in CDA non-withdrawal account)

A heartfelt THANK YOU to all funders! We can never thank you enough.

Finally, a quick update on C's health status. His recent sleep test results came back. Nothing very much conclusive. I was told that his didn't achieve deep sleep at particular BIPAP settings. Tech titrated the settings throughout the night and they went as high as 15/7 (if this even make sense to the general public). C previously was on 12/6 and had increased to 13/7 while in hospital. To keep the story short, doctors would like to increase the settings at a rate C is able to cope with. Therefore they will keep the BIPAP at 13/7. All in all, C seemed to be in good shape for now. Can't wait to celebrate Christmas with my folks!

All So Familiar

We are back (on Monday) from our cruise trip! An energy draining but once in a lifetime outing for the family. No doubt it was tiring for the adults, the children enjoyed it much. C kept asking to go 'gai gai' even after we came back.

There were many first - first time the siblings shared a bed, Cayla's first cruise, first family trip, first travel with machines in tow. All these not possible without special arrangements by Club Rainbow & RDSS. Thank you!

Today also marks the end of our Indiegogo - A Chair for Caelen campaign. It will take another 2 weeks before we get an accurate idea of how much has been raised after the deduction of fees. We will be coming back to that in due course.

Meanwhile C is not doing so well. He has been having this chesty cough for almost a week now. His sats began to drop last night and it does not seem to get better tonight. The oxygen concentrator we have purchased a few months back now parks next to the bed instead of its usual corner. C's O2 at 95% is looking a little bit weak (even with oxygen supply). I guess it's back to the routine of doing chest physio, suctioning, full tube-feeding and round the clock monitoring again.

Hope we will be able to manage this at home and that C gets better soon.

Newspaper Article II

I have received numerous friend requests on Facebook and Google+ as well as emails from the public giving us words of encouragement, well wishes and offers to help in many ways. For that, I would like to say a big 'THANK YOU' to everyone. I have, in fact, replied to many as promptly as I should. I am also aware that some (you know who you are) are still waiting for follow-ups from my end but I haven't, my most sincere apologies.

This week has been hectic as we are in the midst of packing and preparing C's first trip out of Singapore. We will be joining Club Rainbow for a family retreat and will be cruising on Royal Caribbean - Mariner of the Seas. To prep for the trip, I have taken C to the clinic for his flu jab. He is crankier than before due to the jab and teething (again.. this time upper molar) but otherwise his general health seemed to be good for the trip. I, on the other hand, am busy packing for the entire family and IT IS a logistical nightmare. Toys, machines, consumables, medication, bathing chair, luggage for adults, luggage for children, double stroller... the list seemed to go on argh!!! It takes much careful planning to fit everything in the least number of luggage. So please do bear with me, I promise I will revert soon when we returned.

Meanwhile we have done an interview with The New Paper and here is our story featured on 19 Nov 2014. Click to enlarge.


Page 2 Top left

Page 2 Bottom Left

Page 3 Top Right

Page 3 Bottom Right

 

Newspaper Article

Our recent crowd funding campaign went viral and caught the eyes of the reporters.
Here is C's story featured on 新明日报 (9 Nov 2014). Click to enlarge.

 

Campaign Disrupted

*UPDATE*

PayPal has kindly agree to release the funds raised as an exception.

We are thankful for that!

-----------------------------------------------------------------------------------------------------

There has been an unfortunate twist to our crowd-funding campaign.

PayPal has emailed to inform that they will terminate our account as the collection of funds through PayPal is against their policies. Indiegogo has offered PayPal as payment gateway nonetheless (This really needs to be sorted out!).

Funds raised as of today via PayPal will be rejected. As for funds raised prior will also be locked until further notice by PayPal. As advised, probably requires another 180 days before they will release the funds.

Hence, I urge kind funders to visit our blog for alternative options to help.

Thank you all for your understanding.

We will provide an update on case with PayPal when we have more information.

2D1N Stay

Today we checked in to 'Hotel KKH' for our 1 night 'vacation' stay again. C came in for a routine procedure - undergoing his 2nd sleep test this year. The recent one was done in February. Purpose is to determine if the current BIPAP settings serve him well, otherwise settings need to be adjusted to ensure that he breathes well.

As usual C cried whenever anyone came near him. A phobia he developed over last few admissions. These were taken during the preparation process. Needed to be all wired up - legs, body and head so as to take readings throughout the night while he sleeps.

C has grown heavier (from 9.2kg to 9.5kg. He's a very slow weight gainer) and lankier. This time I did not carry him while wiring in progress. All went well and he settled down a whole lot faster than last time (previously he cried for 1.5hr straight before dozing off to sleep).

I hope he fares well for the test. It will be encouraging to know that his lungs are still functioning well and he is maintaining his oxygen level at healthy level. Will know the results soon. At least I will find out from the tech how he does tomorrow.

All I Want For Christmas

As C gets older, he is more aware of things around him. He is constantly drawn by new objects and demands to check them out to satisfy his curiosity. His mind needs stimulation and he is hungry for new knowledge and skills.

Problem is, his physical disability is a hindrance to his exploration. He requires help retrieving objects, he needs support when sitting, he needs to be carried around in order to explore, he needs someone to hold big heavy objects for him etc etc etc. Simply put, C needs me to be there for him, to act as his hands and legs. As much as I can help, I cannot dedicate all my time to him. There is a limitation to my physical capabilities as well.

Therefore, we are hoping to raise funds for a special tomato chair to meet his needs.

Check out the campaign below for more details.

Losing A Part Of Caelen

C made huge progress in his verbal skills. Picking up words at incredulous speed, often by listening and repeating after us, expanding his already impressive list of vocabulary. Surprisingly, his pronunciation is much better than Cayla's. At 19 month old, C is already speaking three/four-word sentences. Each time we turned on the kids' channel or opened up a book, he would get overly excited, rattle non-stop, naming every objects he sees.

 

That, as I always put it, is God's gift. Something which makes him a uniquely special child.

 

8 incisors and 2 molars

Early this month, C was teething again. His first molars were cutting through and he had a great time chomping on his foods (fingers! his and mine). Unfortunately, the fun was short lived.

 

On the 17th, C went for his second video-fluoroscopy and was found to have difficulties swallowing foods of various consistency. He was coughing after every mouthful of food/water he took. Despite my desperate attempts to explain this onset of coughs, doctor's advice was to stop oral feeding immediately as it increases the risk of pulmonary aspiration.

 

This news came to me not as a surprise but the sudden deterioration of his swallowing did. Fully aware of the conditions of SMA, I was mentally prepared for such a day to come. It's just that C had been eating and drinking well. The coughs were triggered the very same day at the hospital. There were little tell-tale signs that he was slowly choking to death.

As I sat outside the lab with the therapists, I fought hard to keep my pain and tears within. Though nodding in acceptance the results of the test, I was in denial. Even when C was supposed to stop oral feed, I remembered urging C to eat up his baby biscuits as he demanded for more. They had offered to intubate him but I rejected it outright and had to sign an indemnity as an SOP. Could not have felt more angry and upset, I just wanted to get out of there.

As I left the hospital and made my way home, I couldn't help but sobbed uncontrollably. The thought of denying C food and water FOREVER was too much to bear especially when he loves his food THAT much. How would a 1.5-year-old understand? It kills me that it pained him.

Caelen enjoying his 'last' decent meal

 

Upon home, I fed C his porridge and went about tubing him the same night. It wasn't easy for him and for me. The next few days that followed were heart wrenching, with C crying, mouth wide opened for food and milk. The best possible way to go about was to slowly wean him off. Giving him a taste of his milk or even water sent him smiling contentedly.

Sometimes a treat to biscuits (in tiny pieces) willed him to work extra hard for it. That is to wear his AFO while snacking. It has been hard but he is adapting. Still pains me losing a part of him to SMA. Torn, but I have to pick myself up each time something gets taken away from C. I would need to survive countless heartbreaks. This is just the first.

Nurse Alice came for home visit the other day. Said something which brought comfort and brought me back to my earlier thoughts. "Do you know that Caelen is a very special boy? Look at him move, how adorable. Enjoy your time with him."

Indeed! He is uniquely special. He is living by God's grace.
He has spent the last 19 months enjoying foods, talking, breathing, moving, growing up relatively healthy and experiencing life where few actually came this far. We should be thankful. I am.

P.S. Lastly, thank you all who occasionally dropped a message when I'm missing in action, who 'liked' and responded to my Facebook updates when I tried to stay connected. I appreciate that.

Star PALS

We have recently signed up with Star PALS - a paediatric palliative care service for children with life-threatening or life-limiting conditions. This decision came shortly after C's last discharge. I suppose the frequent hospitalisation and endless visits drained me out so much, making the idea of doctors, nurses and volunteers coming to our home a very welcoming one.

Star PALS was quick to respond to my application, made their first visit shortly after. The second visit followed closely, which was great! They brought along a volunteer, Auntie June, to interact, bond and build rapport with C. Medi Minders, a service provided by Star PALS, is made up of a group of medically trained volunteers who offer caregivers a few hours of respite for various reasons whether to run errands, take a breather or simply allowing caregivers to connect with friends and family whom they hardly have time for.



Nurse Serene and Volunteer June playing with C

Within a month of joining Star PALS, they have already made 3 visits, with the most recent one joined by doctor to help solve C's bowels issue. C had tears and would bleed every time passing motion and unfortunately developed a phobia. With doctor's advice, medication and monitoring, I actually had greater peace of mind and was more confident in coping with his issues. This was something I really appreciate because it meant reduced (unnecessary) trips to the doctor (usually the only option for C is to visit the A&E) over minor issues. I could always consult the team for advice with follow-ups at home.

The best choice I have made so far =)

Now hoping to look into home therapies for C as well!

Make a Difference

As I laid myself to rest tonight, I had the sudden urge to scan through C's photos, reminisced what it was like to be pregnant with him, how chubby and big he was, how excited it was to watch him meet his milestones and then I wondered how it all came to this. It was unreal. Just 9 months ago he was a budding child and now everything about him seemed to back-track. It hurts bad, still is, I realized.

Looking back then and now, for the progress i have made, I thought I deserve a pat. I have done well for a newbie S(pecial) N(eeds) mom. I have been very open to others about my feelings, about my child's condition, to medical intervention etc. Why? Because I have always believed that my child is different. Being stuck with SMA, at 1.5yo, C has well surpassed other children with the same condition in so many ways. One thing for sure, he is still striving.

But just half a year ago, I held a different understanding to that. My idea of him being different is to not walk the same path others had. Not for C to be locked in a body he has no control over, to suffer this horrible disease indefinitely, a body a life held together by machine support (perhaps against his will). Afterall it wasn't easy watching and "losing" your child a little at a time until all his muscles get wasted. So I was undecided what my response would be when THE question comes - what do you want for your child? 

Until 3 days ago...

We attended a consultation/assessment at a private paediatric physiotherapy centre. Our purpose was to assess C's current needs and to acquire a suitable AFO. 

This was C trying out his AFO. We had the opportunity to make him stand upright to see how well his legs were holding his weight. In doing so, C was no doubt in distress but we could see that he was, at the same time, flexing his legs and trying to lock his knees. Therapist was very happy with his attempts and was hopeful that more could be done for him.

This is it! He could be different! From the bottom of my heart, I felt a glimpse of hope. Maybe he COULD hang on for a cure. Maybe he would not walk, maybe he would continue to get weak but if we start working on his muscles (whatever that is left) he could continue to roll left to right... I would be a very happy mom. Because that is all that I ask for... for C to continue smiling, talking, eating and moving.

Third Hospitalisation

This was his 3rd stay in a High Dependency Ward in 2 months.

Tried our best to manage it at home, went to the extent of supplying oxygen to ease his cough but didn't help much. By 2 a.m., he was coughing so bad he could hardly breathe. He soon ran a temperature and was looking weak. We knew a hospital stay was inevitable and admitted him on 17th.

The usual swabs, blood tests, x-ray ensued. This time round C was tested positive for RSV. He was desating on room air as well as on BIPAP, unable to maintain a healthy oxygen level. At his worst, doctors were supplying 4 litres oxygen with BIPAP support. Good thing was he made speedy recovery and weaned off oxygen quickly.

Reading a book after gaining strength

C was discharged on 22nd and is now home nursing. 

Low Oxygen

C took his MMR vaccine last Tuesday, came down with a fever shortly. I half-expected that because it's a norm for him. He was generally agitated and appetite was poor. With a weakened body, his ability to swallow was affected as well, choking more than usual, be it during feeds or sleep. Just as the fever subsided, his occasional choke-coughs quickly turned into a constant cough that would not go away. C began to desat while he slept and gotten worse by the day with oxygen level dipping 90% and below.

I quickly supplied him with medication and stepped up on his suctioning frequency hoping to ease the cough but it didn't. Left with little option (apart from heading to the hospital), I seeked help from other families, homecare nurses & suppliers, who rendered help and supplied me with an oxygen concentrator to tide over the weekend.

What a gigantic piece it was!

The noise it produced sure matched its frame, loud as a generator.

The new machine arriving next week would be more compact and quiet or so I was told. It better be!

New Shoes For The Prince

At recent occupational therapy session:

OT:   Hi Caelen, shall we stack some blocks today?

         (Showing C how to stack)

C:     (looking eager takes a block and throws at therapist)

OT:   Nooo... let's try again

         (Holds C's hand and stacks a block together)

OT:   Yay! Your turn! 

         (showing encouragement to spur C on)

C:     (picks up a block and throws it across the table)

C:     Yay! Your turn! (with great enthusiasm)

All:   LOL!!

Physiotherapy was entirely the opposite with C crying throughout. Therapist tried something new with him though (as shown in pic below).

This is to test his tolerance for standing upright, supposedly good for his lungs, secretions drainage, digestion etc. It is not fully upright as this is C's first attempt so the incline is approx 60° - 70°. He's obviously not enjoying any bit of it. Even his favourite ball couldn't pacify him.

Due to his condition, therapist had also suggested that we start looking into limb orthotics to manage any misalignment that may arise due to muscle weakness.

Current condition of his feet

A good start would be to acquire AFO for his feet. A custom made pair would cost us $500. This would be my assignment for August - to book an appointment with the specialist and get his 'shoes' done.

P.S. : 2nd hospitalization bill came, another $3,500. His less than 2 weeks stay in June cost us a total of $15,000 >_<||| Seriously need to work hard to keep C healthy!

Life As A Special Mom

I have recently taken a survey with KKH homecare nurses to assess the quality of life as a caregiver to child with special needs.

The sad truth is, the welfare of caregivers are often shadowed by the needs of the patients. Caregivers are silent heroes who speak little of their pains and sacrifices. No one talks about it at all! That is the reason why most people are unaware of what it's like. So come! Step into my world today and take a glimpse of my life (currently it's equivalent to no life) as a special mom.

Typically I work round the clock, 7 days a week. I get an average 4 to 5 hours of disrupted sleep and I take 2 meals a day (sometimes it's down to just 1 for various reasons but proper meals are substituted by bites on the go). Below is how a fuss-free (w/o sickness and hospital appointments) day with C is like:

7.30am     Suction C (as required)
                   Milk for C with half-hour rest

8.00am     Sanitize C's mask before storage

                   Clean suction machine

                   Top-up water in humidifier for next usage

                   Light chores

8.30am     Get C and myself dressed

9.00am     Out with C to do marketing

                   Stroll in the park

10.00am   Unload and sort out groceries
                    Bathe C

10.30am   Milk and massage for C

11.00am   Food preparation, cook

11.30am   Getting C ready for nap

12.00pm   Blend C's food, store for consumption later

12.30pm   My brunch, me time and chores

2.30pm     Meal for C

3.15pm     Play with C (train gross motor, cognitive)

4.15pm     Cartoons for C (R&R), exercise

5.30pm     Milk for C, self-play

                   Occasionally cook for family

6.20pm     My dinner

7.00pm     Bathe C

7.30pm     Time with children, chores

8.30pm     My shower time

9.00pm     Suction C

9.15pm     Milk for C

9.45pm     Prepare humidifier, BIPAP machine, oximeter

10.00pm   Put C to bed

10.30pm   Chores (if any), me time

12.30am   Alternate sensor probe on toes

(Between 1am to 7.30am -  Light sleep for me. Wake from time to time to help C flip to his sides, need to check on C whenever the machines' alarms are set off)

3.30am     Alternate sensor probe on toes

                   Milk for C if demanded

5.30am     Turn off humidifier

7.30am     Wake up

Between these, I would need to squeeze in time for machine & parts cleaning (there are filters to change, pipes to sterilize, containers to wash, parts to change weekly, machines to be serviced), maintaining this blog, raising funds for C, running errands & managing online sales, hospital appointments, social life (or rather, what's left of it). How crazy is that?

What I have written is just the physical demands for taking care of a special needs child and frankly, C is yet to be fully dependent on machine support and this is already the amount of work and time devoted to him. Other families are probably doing much more.

I hope the next time you spot a SN child, spare a second take another look at his caregiver, admire them for they have made sacrifices beyond the imaginable. Lend a helping hand for a simple gesture e.g. holding the lift/door makes their day :)

A Wish Granted

Picture this:

Warmth of the morning sun.

Cool breeze.

Smell of freshly cut grass.

Chirping birds.

Children's laughter.

Colourful playground.

Elderly doing their morning exercise.

The idea of walking C in the park holding his tiny hand and him doing his clumsy walk was planted in my head the first time I laid my eyes on him. Such a simple thought but never given the chance to fulfill it. It thus became a wish on my wishlist.

The family had a studio photography session some time back and one of the challenge was to take a picture of me walking C. Unfortunately, it had not been very successful as C was very weak and we did not manage to take very good shots. Nonetheless, the digital copies were kept on disc together with the rest of the family photos.

Last night hubby came home with 2 printouts for me. It was then I came to know of his secret mission with a friend. A complicated task of photoshop; piecing bits and pieces together to make C complete.

 

The first sight of it was overwhelming. A mixed feelings of completeness and a tinge of sadness. I think it's a feeling only some of us would understand. And yes, I cried for a long time. Thinking of the would-have-been, what-if and if-only. 

Thank you hubby for giving me such precious memories of C. I will cherish them very much.

A Porcelain Doll

An accident at the car park this afternoon.

I have always been very careful handling C all these while but made a grave mistake today - for losing my concentration, for taking my eyes off him. I was carrying C when I took a second to talk to hubby. C lost his balance and fell backwards. The next thing I knew, he was no longer leaning on my shoulder but his entire body and head hanging in mid-air and I was just holding on to the lower half of his body hip down. Fear took over me. I watched him burst into tears and the following seconds felt like eternity. I hugged him close and cried uncontrollably.

Worried sick and unwillingly, I laid him on the back seat, waited for some responses. C was still crying and I wasn't sure if it's due to the shock or if he was hurt. My hands were shaking so bad as I turned him to his side checking for signs of injury, bruising, pain and breathing difficulty. At the same time rattling to my hubby amidst sobs that I was so scare, didn't know what to do, didn't know if he was hurt, that we should forget about meeting my sister & family, go to the hospital instead.

Few minutes passed and nothing. I could not find anything conclusive but that did not convince me C was fine even though he was back to his usual self, laughing and playing. The horrific thought of C sustaining a spine or neck injury; the guilt for letting it happened did not go away. For the entire day, I was haunted by it. I think this guilt and paranoia would stay for a while.

After we reached our destination and while hubby was unloading our barang barang, I took the opportunity to explain to Cayla that I was frightened by the incident and I was sorry for screaming at her earlier. She nodded her head and shared that she was frightened too by what happened. There was a brief silence in the car before Cayla popped a question “Mommy, why 弟弟 (little brother) cannot walk?" That took me by surprise and I was lost for words, got emotional and cried non-stop.

This aside...

We received the bill for C's first hospitalisation. A whopping $11,500.00 for a 9-day stay. That was before the government grant, Medishield coverage and Medisave deduction. Imagine us without any of these, we would probably be in debt for a long time. Anyway, am grateful that the grant and insurance took care of a substantial amount; that we have adequate funds in Medisave to offset the few thousand dollars and that the upfront cash payment was kept to a minimal $100. But how long can our Medisave sustain us, I wondered. Still waiting for the second bill to come, possibly another few thousand dollars.

For now, I rather spend my time worrying about C. I am praying that he will be ok.

Reunited

After spending the week at grandma's nursing her fever, Cayla is finally home (with an occasional cough). The siblings missed each other so much they couldn't wait to spend time together. I guessed a brief playtime between them would do more good than harm. See how they laughed and held each other's hand. Such a beautiful moment to cherish.

A short recap on C's last discharge. I had completed the necessary hands-on trainings with the home-care nurses and came home with a truckload of machines. Here are our latest additions:

From Top (L to R): Suction machine, oximeter, BIPAP, humidifier

Bought a trolley from IKEA that perfectly accommodates the equipment. It now occupies the space which used to be my bedside drawer.

Resuscitator, syringes, tubes, masks, gloves, sanitizers etc

The low built-in storage next to the trolley now stores the consumables... lots of them! No more space for oxygen cylinder so we had to keep it elsewhere. 

Apart from the daily suctioning, C has gradually resumed his oral feed and soft diet (moderately blended meat and vegetables with porridge). He has also been scheduled for another videofluoroscopy session in early August to re-assess his ability to swallow. We hope C maintains his health and continues to enjoy his privilege to eat.

Next to consider - a proper stroller to ferry C and his equipment. Costly!! >_<

Big smile from Caelen! Lots of love ♡ 

Stressful Month

It is 11:00 p.m. and I am just about to have dinner (yes, you read me... 11:00 p.m.).

In case some wonder where we've gone. Well, we've been busy fighting 'fire' at home. C spent 10 days in high dependency ward early June and while we were about to get on with the new routine (of suctioning and tube-feeding), C caught a new bug. He was re-admitted on Monday, spending another 4 days in hospital. Apart from the bout of broncolitis he was having, blood test and swabs showed the presence of Adeno virus and MRSA bug. As the virus was highly contagious, we were placed in isolation ward for the entire stay.

Coming home was something I looked forward to. Just as I was settling down at home and about to spend time with family, Cayla came down with a fever. Since both children were vulnerable to cross infection, they were immediately quarantined. While C was making a recovery, Cayla was sent to the hospital the other night and she is still fighting a stubborn fever at grandma's.

This is a stressful and difficult time for the entire family. The constant worrying and round the clock caring for the children is driving us nuts. Looks like it is going to be a while before I do another update on this blog. Be back ASAP...


P.S. Anya, Armaan & Bridget: Strangers we are but we will never forget your kindness and love for C. We got your message, yes, C is recovering. Thank you angels.

Caring For Caelen

Today is my 8th day at the hospital possibly many more days to go. Seems indefinitely delayed for many reasons.

I ate, bathed, slept and breathed hospital air. Ward 65 is my home now and frankly I am so in need of a good grooming session. Sadly, during my stay here, I only had a 30-min bonding session with Cayla when she visited.

Learning how to connect the parts

C checked in last Tuesday and was immediately hooked up and tubed. Over the last week, he made good progress and was slowly off drip, oxygen, day BIPAP support and therapies. Unfortunately C was traumatized by the never-ending suctioning and soon refused to feed orally thus the need for NG tube. In order for C to be discharged, I need to learn how to suction, tube-feed, intubate and change his NG tube (successfully under supervision, 3 times, once each day which equates to an additional 3-day stay in the hospital). So poor mommy here has been taking up hands-on sessions with the homecare team (enthusiastically) to speed up C's discharge. The enthusiasm is somewhat dampened by many hurdles along the way (i) the need for more than 10k worth of new machines e.g. BIPAP, humidifier, desktop oximeter, suction machine, oxygen tank, a long list of consumables. The acquisition of which requires time and this further delays his discharge (ii) the time required to complete my hands-on (iii) the tons of information on patient care, machine usage and care etc to digest (iv) meeting with medical social work to discuss on possible funding (if we are even eligible in the first place).

First time intubating (inserting tube from nostril to stomach) and suctioning C was rather successful (if you could just ignore his screams and cries during the process). Luckily I'm not one who hesitate at the slightest protest or squirms at the sight of blood. I'm still hoping for the earliest possible discharge. Till then...

First Hospitalisation

C was admitted to KKH High D Ward just 3 hours ago.

It was a cough that started the day before, got worsen by the day accompanied with a high fever of 39.5°C. His sats were not looking good. SpO2 at 92 while asleep with BIPAP. It even dropped to 87 at one point. On seeing that C was in agony, we decided to make a trip to the hospital.

After initial assessment, doctors suspected a case of acute bronchiolitis, felt that he could do better under close supervision and advised for C to be admitted. In the next few hours that followed were many tests, poking and plenty of beeping from the machine. Prick test was done. Swabs from the nose, armpit and groin were collected. A drip set on his tiny hand. Oxygen mask donned his face. Sensor probe on toe to monitor his vitals.

C fell asleep shortly before 5 a.m. and as for me I'm blogging away to pass time. How to sleep on a wooden chair in a freezing room? And to think that I'm going to be here for the next few days sigh...

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.

Rejoice!

Always been a side-sleeper

C's respiratory doctor had returned from leave. We took the first opportunity to explore the possibility of reducing BIPAP pressure settings so C could quickly resume usage. Dr B was very understanding and see to the changes immediately. Pressure was dropped from 15/7 to 12/6.

First night of trying yielded surprising results:
09:00pm   Mask on
10:30pm   Fell asleep
11:00pm   Woke in state of shock, heart-rate climbed to 170
11:20pm   Returned to sleep
07:30am   Slept till next morning

Second night was a breeze:
09:30pm   Mask on
09:45pm   Fell asleep
07:00am   Woke up

It definitely brought about hope and peace of mind knowing that C is quick adapting and is able to breathe properly during sleep.

Mid-week, we made another trip to KKH for a scheduled (video)fluoroscopy. C being a glutton, completed the procedure effortlessly. Nom nom nom, doctors monitored the motion x-ray display and voila! he's done in less than 10 minutes. Doctors observed droplets of milk entering and exiting the top of his airways, C is at risk of asphyxiation. Taking preventive measure, we were instructed to change his bottles and teats to one with extremely slow flow (so slow that C became impatient as he took 20 minutes to finish a feed). While drinking poses a risk, doctors were somewhat satisfied with his ability to take blended food. In fact he fared better eating than drinking and hence agreed that C continues to eat as tolerated, which is just as well since C loves to eat.

Other than going for appointments, what has C been up to lately? Well, he is pretty much growing up like a normal child. He prefers to be up and exploring than lying on his bed. We thus try to accommodate whenever possible, carrying him around teaching him new things. C is also fighting to be more independent too, wanting to hold his own bottle (provided it's not too heavy for him). See how elated he was doing that!

I hope to see more milestones coming. Surprise me baby :)

 

Before I go, this entry is for tonight:
10:10pm   Mask on and fell asleep

Blessed. Good night peeps!


P.S. Uncles & Aunties: Thank you for your generosity and kindness. Little C is very thankful and blessed to be loved by all.

New Gadget

Ta-da! A delivery on April Fool's Day! Latest addition to our collection of gadgets - a handheld oximeter which cost me $1,200 and the box of probes (far left in pic) cost another ridiculous $640. My jaw dropped when sales rep quoted a whopping $3,200 for a table-top oximeter!!! That, is another heartache for another day... when my heart is stronger (I doubt).

To cool things off a little, we have decided to shave off C's hair. Weather is way too hot and humid for his liking. How's the new look? I thought he is still as handsome.

C has been making tremendous progress in his linguistic skills. For a one-year-old, he is already using short three, four-word sentences e.g. 我要这个，我要那个. His vocabulary is quite impressive too as compared to Cayla at his age. I suppose his language skills compensates for his lack of mobility and he is able to tell us what he needs and wants. He does the talking, we do the walking haha. See, God is fair. Mommy is really proud and can't wait to review his progress in few months' time!

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.