Friday, March 29, 2013


For the last few days, I've noticed a little change in Jonathan's control over his movements.

On any day, whenever he watches this particular Wheel of Fortune game show, he usually gets all excited and will be kicking hard, not controlling his movements and his involuntary movements goes to the overdrive. By the time the show ends, which is like 15 minutes later, he would be drenched in perspiration and tired. It does look like he's just had a full workout.

But of late, when he requests for this game show, I will tell him to control his movements and he does it. He still get all excited. But his movements are controlled. He doesn't kick and bang his legs on the floor (that he does as a result of involuntary movement) as much and he doesn't droll as much too.

This to me is an improvement. He not only did it once but a couple of times.  There are times if I don't remind him, he does go overboard. But I'm happy it seems his brain is registering the instructions given and put into action.

The other is when he tries to help me pass his shirt. Most times, he will swing his arm quickly just to try to grab the shirt. But when I say "do it slowly", he does slow down and eventually able to grab hold of the shirt.

I'm pretty sure his brain is improving. May be just a fluke but I'm looking forward to see more improvement.

On the note of improvement, I'm starting him on 7 scoops of milk today. Doing it gradually. I will see if he's able to take the first milk feed today with the increase.  Just only one feed first to allow his body to adjust.

Thanks for visiting.  God bless!

Wednesday, March 27, 2013


Jonathan had his diet review today at KK.

Weight:  24.9kg (up by 300g in six months)
Height:  137cm

He looks tall.  I was surprise it's only 137cm +/-

But I'm happy he's gaining weight.

Dietitian KY said that it's good he's gaining and growing.  The ultimate weight to achieve this year is 29kg.  That's 90% of the 32.9kg that he's supposed to be at his age of 16.

She also recommended that we increase to 7 scoops of the Isomil Advance Plus 1-10 yo soy milk.  I did ask about switching to adult but she's more concern about Jonathan's health as when he used to take Pediasure he had a lot of secretion and most adult milk are cow milk base even though they may be lactose free.

It's ok for him to keep taking the Isomil so I'm happy with it because this milk regulates his bowel movements and is soothing to his tummy.  We just need to up it because he's growing and it's only 1kal.  So his weight will not gain so quickly.

The new vitamin supplement she introduced was ProPhree.  It's powdery form and has a more balanced of all vitamins with sodium and potassium compared to those bought from health stores.

Have pre-ordered a can from KK ( can only buy from there).  We shall test and see if it's good for Jonathan as Ms KY said that they have tried it on young patients with protein problem and it worked well.

The other matter I discovered today was that at KK, the maximum age limit for boys is up to 16 years old.  Last year, we were given a discharge by the neurologist with 2 years of open date and a letter briefly describing Jon's condition in case we needed it for future referral elsewhere.

This moring, the Dietitian told me that by right, they should make the necessary transfer for us to the adult hospital because of Jonathan's disability.

Thank God for Ms KY who said she will check for me.  She has taken care of Jonathan's diet since he was young.

I'm hoping that he can be transferred to Changi General Hospital which is just 15 minutes away by cab from my place.

Thanks for dropping by.  Hope everyone is well.

God bless!


For someone who takes in more than 2 litres of fluid everyday, it's highly unusual that Jonathan's diaper is dry for 3 hours.

It started on Thursday 22nd March.  I noticed his diaper only had a small amount of urine. Got me a little worried. But then the weather was so hot and he was perspiring a lot, I thought it was probably due to this that's why he was not peeing that much.

On Sunday 24th March, he did pee but diaper was mostly half full. There was no pungent sell or discolour.  This morning, I changed his diaper at 9am and for the next 3 hours, his diaper was totally dry and I noticed he made jerky movements. He also told me pain when peeing.

Brought him to the clinic. Doc said there are symptoms of UTI. But since it was hard to collect urine sample, would treat him just the same.

He prescribed antibiotics and potassium citrate to give him the urge to urinate. He said UTI in male is rare but when it does happen the pain can be quite bad. So he told me to give Jon panadol.

Through the next few days, he said peeing was not as painful as before.

I felt totally bad that I didn't bring him to the doctors early.  Little boy was in a lot of pain but he was really bearing it.  I was totally surprised that when I mentioned about bringing him to the clinic, he was all for it!

Still one more day to the 5-day course of antibiotics.  But thankfully, his diaper is filled up again and now I really have to be careful about his hygiene down there.  And he's happy again.

Saturday, March 09, 2013


When I ask Jonathan to pronounce words, sometimes he does it and sometimes he doesn't.

But I do notice that the best time to get him to speak words is before he sleeps.  I don't know why but he does it pretty well.

Just a few days ago, while changing him before his bedtime, I had a short conversation with him about trying to pronounce words cos I was teaching him how to say "hello".

Me: Kai Ming, you must listen to the words and try to say it. You know?
Jon: "ah d no"

He confirmed to me that it was "I don't know"

Could have been a spur of the moment but me happy :)