Project Hovercraft

Project Hovercraft is complete! It's a DIY project to help C counter gravity pull, allowing his arms to 'hover' and move freely.

Yesterday we did a pilot test without the arm slings. He was quite receptive to the idea. And today, the moment I took out his tablet, C immediately requested for the 'loops'.

This is how the structure looks:

Costs:

Clothes drying rack   $28
Set of resistance bands   $24.90
(Bands are of different resistance. If you require 2 of the same load, get 2 sets cos I don't see them selling single bands. It didn't matter to me so 1 set is fine. I use the rest them for my stretching exercises)
Carabiners   $14
(I use 4 large and 2 small ones. Mix and match different sizes to obtain the length you require)
Harness   $11.80
(In video, I used an adult wrist guard. A pair of wrist guards or child arm slings can be expensive so it's up to individual which to use so long it works. As a cheaper alternative I bought a pair of full body harness for miniature dogs haha. The widths are adjustable, I figured they might work. Will update with pics if they really do)
Total damage: approx $78.70 +/-

Haze Haze Go Away

Worst haze so far. Not the most severe but the longest running. We've been confined for 3 weeks now. I'm used to not setting foot outside of house entirely but this was pure misery, being cooped up at home with windows and door shut made me really depressed.

C started choking and coughing around the same time haze striked. We were unsure if he was affected by the haze (causing an increase in secretions) or part and parcel of regression. I had observed a decrease in strength (upper limbs and trunk). C complaint about his hands not reaching the top part of his tablet and not being able to turn to his sides. Perhaps we would have a better idea once haze clears up.

C was supposed to start class on a Monday 2 weeks ago. His teacher came down with a fever and the classes were adjourned. Hopefully we would have our 1st lesson next week. Looking forward.

Anyway despite the little illness, C stayed cheerful all these while. Always his cheeky self when going through the chest percussion and suction routine. I didn't know if there were other children who could laugh, talk continuously, and joked around (pretend to retch) during suctioning. C is such a child.

Today we did our standing practice in the living room. Something amusing happened. C Sang and danced to the Mickey Mouse Clubhouse song. Check out the video (need to turn up the volume):

Conversation with the therapist:

Me with the time at home, began to explore new ideas. I've started another DIY project to help C overcome some of the constraints faced, in the hope to minimise his frustrations. Can anyone guess what I'm going to make?

If we were to get gadgets, it would cost a bomb and most likely not available here. While improvising does keep costs down, it might not achieve the same result as the actual gadget would but I'm hoping it could still help C in some ways.

Last 1.5 years we were considered novice SN family. Our lives evolved the diagnosis, machines and coping with changes to routines. I supposed we have graduated and moving on to the next phase. Why do I say that? Cos I'm facing problems the 'old birds' faced - machines breaking down and giving problems, needing to acquire/upgrade existing ones, to make the days more constructive to meet the child's growing needs so on and so forth. Phew! New challenges await!

I Am Going To School

Taken in Aug - grown up look

Last week C and I both came down with a fever. I had a really bad throat and was worried C might be having the same. Luckily, whatever bugged us went away as quickly as it came and we had been staying indoors since largely due to the haze.

Taken in Sep - Chubby Caelen

C had been 'eating' well and putting on quite a bit of weight, looking chubbier these days. Although growing bigger, he was also weaker. The strength he initially possessed now seemed inadequate to serve his bulkier body. At sitting position, his head "dropped" more often than desired. The other day, while using both hands to support his chin, he said to me," Mommy, mommy, help me! My head is too heavy! Can I take out my head?". Funny things he say...

Physiotherapy and any form of exercises are now tedious tasks for C, they tire him out easily. Simple task like holding a spoon became a struggle (he now uses a small KFC plastic spoon to eat instead). Passing his milk bottle to me became a chore and he chose to throw in on the bed. Removing his pants and diaper were no longer the things he loved to do. These were some of the things about SMA we grew to embrace and accept. With little adjustments here and there, we went on with life as usual.

Oh there is one thing to be excited about. We found a home-based teacher for C! He will be starting his first lesson next week. This is something sitting on my wish list for the longest time (ever since I started this blog), waiting to be fulfilled. I think C is excited about attending lessons too. Let's hear what he has to say:

 

Hope to bring you more updates on his lesson very soon!

My Favourite Things

Hello everyone!

Every morning mommy will place me on my special chair while we watch cartoons and have brunch together. Today I am having cereals! I love them because they are crunchy and I call them 'crispy'. Chocolate, cake, ice cream and gummy bears are a few of my favorite foods too. Even though I only get nibbles, I'm satisfied to be able to eat.

Mommy insisted I brush my teeth thoroughly otherwise monsters will grow in my mouth and I won't be able to eat my favourite foods anymore. This I happily obliged. *Whispering* Sharing my secret to healthy teeth with you - always use a good toothpaste (with 1,000ppm of Floride) to effectively prevent decay. Here's what I use:

Rice grain size for me; pea size for older children

I know a lot about vehicles because they are my favourite toys. I have boxes and boxes of them! 

My toys mostly came from daddy & mommy, uncles & aunties, and kinder surprise eggs (Oh boy, I loved surprise eggs! Do you know YouTube has loads of videos on all kinds of eggs big and small? I always marvel at what comes out of them). By the way I like Legos too! I can build any cars I imagine them to be although it takes me huge efforts to stack them together.

The last thing on my favourite list is none other than tablet. Mommy dislikes when I ask for it often but she seems amazed how I picked up words and gained so much information & knowledge from it, she couldn't keep the tablet from me.

Do you know that I picked up swimming on YouTube? I was watching videos of children having fun in the pool and I learnt that you must kick your legs to stay afloat. Now whenever Cayla jie jie brings me to the pool (on our huge bed), I can swim too! That was so much fun.

I have a pet turtle on my tablet (and 2 real ones in the tank). I learnt how to shower, feed and play with it. See! I'm capable of caring for others too. Lately I'm quite interested in dinosaurs and have been learning their names diligently. Hopefully next time I'll be able to tell you more about them soon.

P.S. Mommy's laptop broke down few days ago. It will take time before she can blog properly again.

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.