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!