I Can Drive Mommy!

Call me 'Kiasu', call me 'Kiasi'. I had kept C mostly indoors for the past weeks just so he stayed healthy and strong for today's appointment with the Rehabilitation Clinic. This appointment was booked a month ago to assess C's ability to steer a power chair.

First look at the power chair, C bombarded me with questions e.g. "is this a power chair?", "what colour is it?", "I can sit on it?", "I can drive?", "can I turn it on?", "where to press?" etc. He was obviously as excited as I was.

C's virgin pilot was quite hilarious. As he steered, the chair spun in circles. Techie held on to the chair to prevent it from going out of control while therapist broke C's grip on the toggle. This scenario was played over and over again. Instead of showing fear, C wore a cheeky grin on his face and 'drove' with zest. I couldn't tell if he was enjoying the ride or getting a kick out of those two hahaha.

Anway, here is the first video. To be honest, it was a lousy clip. In the midst of filming, things got out of hand and I had to ditch my phone to shift furniture out of his way.

 

Here's the last video after several attempts. He managed to control his grip better and went slow on cue. Still needs constant reminders and guidance. But I guessed he did well given that he's just 2yo. I'm sure more practice would help him get the hang of it.

 

 

After the trial and assessment, therapist concluded that C had more than enough strength to steer. She suggested we go with a US model power chair which has better compatibility with other parts and would allow for greater customisation mainly the headrest, base, harness, seat and expansion.

 

Now, we wait for vendor to gather the parts, assemble the demo set and to fix a date for the next trial at the warehouse. We will get to try the touchscreen interface too to determine which mode of control suits C best. Meanwhile, the acquisition of a suitable standing frame is also being looked into. It will take a while but surely getting there.

Exciting Plans Ahead

The longest break by far.

Thanks to our not-too-far-away neighbour, C was down for 2.5 weeks in hazy October. We had to deal with fever, nose bleeds, desaturation and many choking episodes due to the increased secretion. He was off oral feeds too resulting in another round of weight loss. On a brighter note, he regained some strength after shedding off the extra pounds (peak at 11kg). All is well now as we resumed his oral feeds about 1.5 week ago.

Taken early Nov

Yesterday, C went for his quarterly routine review with the medical team. Nothing of concern except his pinky is slightly stiff. No need for videofluoroscopy soon as he had been eating fine. Sleep test had been scheduled mid of next year since no major issues with O2 saturation. We've also explored the option of medication - Salbutamol that some patients in other parts of the world were taking claimed to improve strength and function but it's something to think about later. For now, so long C remained well, that was all I needed to know. Even if it meant to continue with our routine days of tubes, syringes and machines. I am thankful and happy.

There was something else I'm really excited to share here. With C turning 3 in about three months' time, I wanted to make a wish with Make-A-Wish Foundation. It started off with C's followers asking if  I had thoughts of buying a stander, which, was long on my next-to-acquire list. After gathering information needed, I had a discussion with the therapists at KKH. For some reasons, while deciding if we should proceed, I had a change of heart, a sudden realization. I pictured C not on a stander but power chair instead. The thought of him cruising down the park, the first step to independence, the smile on his face, the joy he would have felt that instant flooded my heart with emotions. Without a doubt, I went with the power chair. And yes! we would be back next month for an initial assessment on his suitability (to use a power chair) before putting it up to the Foundation. Regardless of how this develops, the idea alone was exhilarating. I am sure C would be really excited too.

As for the purchase of stander, we would still pursue it but might take a tad longer. Upon checking with DNR, the models deemed suitable for C all cost between $5,000 to $6,500. We are trying our best to raise the funds needed... hopefully soon.

What we did daily:

• Stretching exercises - especially hamstrings as they were getting tight
• 10mins of standing - wearing his gaitors and AFOs (probably the max amount of time I can hold his weight, anything more puts a strain on my wrist)
• 10mins of independent sitting - some assistance needed when he is off balance. Almost dropped him once when he lunged forward. Luckily he landed between my knees *shudders*
• 3hrs of sitting on his Tomato chair. C likes to paint these days. On the right is a piece of work C painted over 2 days.

Here are some vids on his progress:

If you referred to vids in my older posts, his posture was bad, usually with a slouch. Now he seemed to have improve much by using his arms to steady and prop his body upright.

 

Here you see that he had greater control and was able to open and close his legs. In the past, his legs would give way and flop open like a froggy.

 



 

P.S. We are still looking for suitable teacher to home-school C. If you do have any contacts, please link us up. Thank you!

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!