SICKNESS AND STAR PAL

On November 3rd evening, Jonathan started showing signs of unwell again.  The vomiting started at lightly at 8pm.  At 9, we brought him to the GP and thought of giving him the jab.  But I remembered the last one he had (Maxilon or something) really made him hyper and he couldn't sleep properly.  So doctor said just stick to suppositories.

By 10pm, the vomting became worse.  And he continued through the whole night. On any other occasion when he is unwell, he would normally stop retching around 4am.  But that night on the 4th, he was still doing it right up to 7am.  Although not frequently but mostly on the hour or two. Vomit contents mostly dark brown.

We were contemplating to bring him to KK but suddenly remembered Star Pals and their after office hours on call. Spoke to the Doctor, who advised me to stop all feeds, even medication. He explained that Jonathan would not be dehydrated even without water for one night.

Doctor arrived within the half hour, checked Jonathan and decided to give him a jab. The injection worked and immediately the retching stopped.  I was told that the medicine for the jab was more to control the brain.  Previous injections at the GP were more for the intestines, to stop the tummy from churning.

Perhaps this is the reason why most of the time, even after receiving the jab from the GP, he would still be retching.  But I was glad that Jonathan finally stopped that morning.

And finally, both of us were able to have a good deep sleep for at least another hour.

Doctor further dispensed 2 other medication for Jonathan which we had to pick up from the local pharmacy.

Thank God for Star Pals!  We were just introduced to this program by Jonathan's neurologist who felt that this service will be beneficial for us.  And we only had one meeting with Nurse Serene.  I must say God really planned it all for us.

Dr Chong is a very gentle doctor.  He was very reassuring and although he had a meeting to attend that morning, he came to us first before going to his office.

He started Star Pals to help children with life-limit illness and special needs.  You can read the article about him HERE.

 Lord thank you for connecting us to Star Pals and thank you for blessing Jonathan with continued good health.

NEURO APPOINTMENT AND BUTTON CHANGE 23RD OCTOBER 2014

Thankfully Jonathan was willing to go to KK that morning on the 23rd of October. He didn't even protest. But I did tell him it was time for button change and he was alright with it. Normally it would be a struggle just to get him onto the buggy.

The waiting time for his appointment with the neurologist was almost 1.5 hours. The doctor said, "it was good to see Jonathan again after 1.5 years." Haha.

Review went well. We found out he is already 150cm tall. And that's almost my height! They will have to use a longer measuring tape in future haha.

After Neuro, we rushed down to surgery for the button change. I was happy that an experienced nurse was there. She always changes buttons at a fast and efficient manner. First thing she asked me was "Isn't he afraid?" Well...if he was he didn't show it. Our boy was as cool as a cucumber LOL. They know him by name and even after so many years they will still ask if he's nervous. I should have said I'm the nervous one haha.

I scooped him onto the bed, they got their things ready, applied lubricant around the stoma and then nurse said "sorry ah". The next thing I heard was a "pop" and a little grunt from Jonathan and done. All within 30 seconds. Very little bleeding. Thank God for that.

We fed him there. It was meal time and also in a way to test the button. Gave him panadol to ease any discomfort.

"Do you have any pain at the button area?", I asked.

He replied "no".

Thank you Lord everything went well. Till next year...

ONE PICTURE SAYS IT ALL

Jonathan loves to lie down next to me whenever I lay down on his mat.  His favourite position is to roll over to me, place his head on my lower back and uses my body as his pillow.

I've taken a few pictures of that position before but I cannot remember if I have ever posted it here.  Oh yes I did!  It is HERE :)

Anyway, it was one of those days and that day, he decided to hold my hand and when I stretched my arm, his had just continued to rest there.  So I decided to take a picture.

After I took this photo, while uploading it into Facebook, I realised the word GIFT was just above my arm. I was really surprise by it.  Yes....Jonathan's name means GRACIOUS GIFT OF GOD.  He is a gift, no matter what.

This picture says it all.  It was so nice :)

God bless!

REFLECTIONS OF MY BIRTHDAY 19 OCTOBER 2014

My special day started at 12 midnight on 19th. H placed his hand on my head and prayed a wonderful and nice prayer over me.

I'm grateful to my family. My love and my son. thank you for your unfailing love for me.
And so my day came and went and I'm reflective only now when the "day" has ended.
The first 20 years was of baby steps to youthful fun.

The next 7 years was of career, courtship and one step into marriage.
These past 21 years have been eventful...of married life, family life and back to trying to lead a life with passion.

Who would have thought that 48 years have passed by and I still think I'm the baby girl of my big happy family and a mother of a child with special needs, who laughs at my sometimes childishness, actually, most of the time.

I'm not shy to say I'm 48. Sometimes I look at others and i think "he/she is younger than me? and he/she is more mature than me!" hahaha. I'm thinking...I'm going to hit 50 in two years and I'm like....wake up kid!!! hahaha

I've seen life in birth, I've seen death occurred, I've seen mid life crisis in others and I've seen happiness in most. Although one brings joy and the other brings sadness, there's not telling when or where good or bad will happen.

So at 48, I've asked for health, wealth, happiness and long life. At 48, I seek to still improve my skills, dare to challenge myself in things I don't actually do all the time; and at 48.....live life to the fullest no matter what.

Live a life...laugh in life...take pleasure in life. Don't be nasty...don't fret...don't criticize. Most of all, I try not to let the downs make me go downer, if there is such a word. But I shall let the downs bring me up, because the word "down", when read upside-down, starts with a U and ends with a P.

UmoP.

Easy to write and say but sometimes hard to achieve. Still I can tell you....it's such a pleasure and elated feeling when you are able to do it. And I'm proud to say I have achieved some.
I moan and I groan when things don't go my way. Still acting like a big fat kid. I've got a long way to go in this area hahaha.

So at 48, a BIG AND HUGE thank you all my wonderful family and my dearest friends near and far. For all your best wishes of blessings and love and gifts. It's so nice to have a birthday and it's so nice to know that you are loved again and again every year.

And I'll always be reminded:

F or I have watched over you.
O ver all the years you have lived.
R edeemed by My Son's death at the cross.
T otally saved and given unmerited grace.
Y ou shall be blessed for I AM your blesser.
E ven though the valley is hard to travel,
I will never leave you nor forsake you.
G ood will turn out from the bad that you have experienced
H ope will become real.
T ake heart....because I will be there for you.

48.....

The next day, H bought me a cute little fan.  He said it will keep me cool while I work without turning on the air-con.  I love it!  USB plug and it's not too strong that gives me headache when blowing at my direction and yet, it does keep me cool.  It oscillates as well which is good.  Thanks dear!

Then my good friend and Unnie, Olive, gave me a nice paper bag with beautiful ribbons.  She knows I love ribbons and when she was in Vietnam, she bought these for me.  Thanks unnie! Too nice to use them! hahaha

Love to all and God bless everyone for reading this post of my journal :)

BARD BUTTON CHANGE ON 23RD OCTOBER 2014

It was time for changing the BARD button again.  Two days before 23rd, I called the Surgical Department to request for a time slot to change the feeding button.  Jonathan heard our telephone conversation.  Even though I tried to speak in words that didn't reveal "hospital", "KK', etc, he knew what it was all about.  Of course he reacted with a little anger but was soon calmed down after I explained the need to do so.

Thankfully Jonathan was willing to go to KK that morning. He didn't even protest. But I did remind him it is time for button change and he was alright with it. Normally it would be a struggle just to get him onto the buggy.

The waiting time for his appointment with the neurologist was almost 1.5 hours. The doctor said, "it was good to see Jonathan again after 1.5 years." Haha. Review went well. That day we found out he is already 150cm tall. And that's almost my height! They will have to use a longer measuring tape in future haha.  I'm grateful to Dr C for caring about Jonathan's well-being.  She has arranged for us to be under STAR Pals.  We will be meeting the nurse representative this coming week.

After Neuro rushed down to surgery for the button change. I was happy that an experienced nurse was there. She always changes buttons at a fast and efficient manner. First thing she asked me was "Isn't he afraid?" If Jonathan was, he didn't show it. Haha. Our boy was as cool as a cucumber haha. They know him by name and even after so many years they will still ask if he was nervous. I should have said I'm the nervous one haha.

I scooped him onto the bed, they got their things ready, applied lubricant around the stoma and then nurse said "sorry ah". The next thing I hear was a "pop" and a little grunt from Jonathan and done. All within 30 seconds. Very little bleeding. Thank God for that.

We fed him there. It was meal time and also in a way to test the button. gave him panadol to ease any discomfort. The young girl next door was crying and screaming and the prince kept wanting to peek through the door.

"Do you have any pain at the button area?", I asked. He replied "no".

We reached home and all was well.  Jonathan didn't show any motion sickness even though I had his inhalant ready in the bag in case we needed it.

I'm very proud of Jonathan for going through this procedure year after year.

Thank you Lord everything went well. Till next year. Thanks everyone for your encouragements and reading my journal.

HULA HOOPING EXERCISE

I watched a doctor program on tv recently and they introduced hoola/hula hooping as a form of exercise. I decided to check it out. I found out that hoola hooping can help strengthen the back muscle amongst other benefits. And so i ordered one online from www.hulahoopsingapore.com and received it end September.  May, the owner of the hulahoop company, said for the first week, I should hoola for 5 minutes per day so that my waist will not be sore and slowly get used to the hoop.

Since Jonathan was not well, I didn't touched it till a few days ago.

I tried and the hoop kept falling. It's not easy to control and the foam hoop, which is 100cm in diameter (according to Mary is ideal for my height) is 3 lbs. This hoop has adjustable weight by adding small iron bars inside the hollow part of the hoop that adds up to at least 5 lbs. The foam hoop cost $69.90. Plus shipment courier I paid a total of $69.90.

It's quite funny trying to keep the hoop up. Jonathan kept smiling at me. Haha. By the end of 5 minutes I was actually perspiring. H said it's because I had to squat and stand just picking up the hoop that dropped so that's counted as exercise already haha. Ya very funny!

I didn't give up.  Every chance I get in between taking care of Jonathan, work and house chores, I'll pick up the hoop and start hoola-ing.

Today, I did a few 2-5 minutes exercises.  Each time I did about 200 rounds, the last slot I managed to go up to 350!  I kind of found my rhythm.  But sometimes when I get distracted, the hoop starts to move down and then I will speed up my movement and it moves up to my waist again.

I do find that it helps with my back.  For the last 2 days, I don't seem to feel the nerve aching at all.  I don't guarantee that this is the result of the hoola-hooping but only time will tell.

But it's been fun.  At least i get a break in between what I was doing that time and it gives Jonathan a chance to laugh at my comical movements. haha.

Stay healthy everyone!

FIRST LUNG INJECTION AFTER SO MANY YEARS

And prayerfully the last too.

It started on Sunday (28th September) evening. He was making soft moaning sounds. Was drooling alot but after giving him medication, seemed fine.

I went off to my mom's as it was my turn to help with mom on the maid's day off. While there, I received a text from H that Jonathan was showing signs of being unwell.

Rushed home to find him with low grade fever. But escalated to 38.5° in the middle of the night.

This morning, instead of seeing a well rested kid, Jonathan began to look really lethargic. At the clinic, he started breathing heavily and the sound of phlegm coming from his chest area was really loud.

Upon seeing him, the doctor said he looked pale, perhaps we would like to admit him. He left us to decide and proceeded to administer the nebulizer to Jonathan. The nebulizer treatment opened up his airways and he became pink on the lips again. Airways were opened but his chest/lungs were still with phlegm.

Doc gave us 2 choices. Admit him at KK or return to the clinic tonight for a 2nd treatment since he was breathing better. We opted for the 2nd choice.

5 types of medications were prescribed for him. 2 types of inhalers are to be used.

Jonathan has not had a bad lung infection since 8 years ago. I don't know how it became this way although i could see he was already showing signs just a few days back.

Miraculously after the clinic visit, once at home, he started coughing out all the thick gooey secretion that were irritating his throat that caused the raspy crackling sound each time he took a breath. And after giving him chest physio, he seemed to be coughing out more.

I feel relief that he's able to cough on his own. I hate the thought of the suction tube going down his mouth and throat at the hospital.

He has protested even while hearing the discussion between H and I on bringing him to the hospital. But now, even though the fever is 38°C, he's resting and there's less sound coming from the throat.

I think it probably started because he has refused to sit on his chair lately and opting to lie down all the time. I should have been more firm. But since he was ok, it didn't occur to me that it would happened. I totally forgot about it. Huge mistake :(

Treating a child with special needs is pretty much a guessing game when it comes to medical treatment. With Jonathan, even though he understands and can tell us, he will tell you no pain, no discomfort and no problem just to avoid seeing the doctor or a trip to A&E. So it is also a guessing game to see if it's serious enough for urgent medical action to be taken. But funnily he will still tell me he needs medicine when he feels unwell. For this I'm thankful.

Last night we went for the first review at the clinic.

While he was pale and breathless in the morning, the doctor was very surprised that he recovered 50% compared to the morning.

The cough mixture he prescribed did help in a way. Instead of suppressing the coughing, this medication purposely made him cough more. That caused Jonathan to cough out all the phlegm and secretion.

Although it was a long and tough night with fever going up and down, from borderline to high of 38°, having to wake up every hour to check his temperature and making sure he doesn't choke on his thick phlegm was a little draining. He finally had a deep sleep at 5 am.

We still need to go back to the clinic daily for review until they discharge Jonathan. Thankful for our family doctor's who really takes care of our boy.

And glad we decided not to go the hospital. It would have been more tiring.

It's not the haze the caused it. He's been indoors but according to the doctor there is a strong virus strain that's going around. They have experienced a lot of patients with chest infection.

The chest therapy still continues. the inhaler therapy will also still continue. But as of this morning, I'm thankful the fever has subsided.

Now I have to handle the diahroea issue as the Augmenting antibiotic he's taking now causes watery stools. But I'm can't complain. Just have to wait patiently while giving him Lacteofort solution to ease the diahroea.

let this episode be over soon!

Lord, thank you that "by His stripes Jonathan is healed" 1 Peter 2:24

God bless!

BLESSING FROM GOD ON 25 SEPTEMBER 2014

While feeding Jonathan this morning, halfway through the milk feed while I was pouring the milk into the syringe, he wanted to change a video clip. But instead of telling me, he swung his arm. Well...his arm hit the tube, it became dislodged from the feeding button and the syringe also slipped off from my hand. Milk splashed all over the mat where he was lying on and falling on me and the iPad. My arm and his arm were covered in milk. Naturally, I blew my top. This is not the first time he's done it. Well I can't totally blame him. H has been telling me to be more alert because that's what Jonathan has been doing lately.

 So....

I'm very very thankful that the Lord sent family to cheer me up. They are my cousins Meng, Tay Grace and Sharon Tay; and also so my brother Larry and sis in law Mary.

Sil Mary texted me to say they are making a special delivery.

And it came in the form of a big packet of Chey Sua fried carrot cake. The "delicacy" that I have been wanting to savor for a long time but have never found the chance to go down.

Thank you Lord for this timely gift of joy. Small as it may seem for some. But the huge gesture that came with it means a lot to me and touchd my heart.

Every mouth I took was punctuated with "oh my gosh...so delicious!" Sounds a little too much right? But that's what I felt with each mouthful.

Thanks cousins and brother and sil. The Lord used you to cheer me up. God bless you all abundantly.
I'm thankful that the rest of today will continue to be great today and won't allow anything to dampen my spirits.

If you want some really delicious comfort food, do head over to Chey Sua Carrot Cake stall at:

Toa Payoh Town Council, Lorong 2 Toa Payoh, Singapore 311125

 

TINGKAT MEAL DELIVERY SERVICE

We decided to try out meal delivery service after my sister-in-law mentioned to H about it. We have tried and tested a 5 day service from Kim's Kitchen. The food is nice and tasty. But somehow at least two of the 4 dishes have this sour taste even though the food is still edible. Perhaps it's because they have been in the plastic container for a prolonged time. And they have a sticker that says to consume between 3pm and 7pm.  But we usually do after.

So I decided to search online for another caterer.  This time we have a 5 - day trial fro Rajah Inn.  The food is not bad. Big portions for 2 persons. Slightly more than Kim's. But some of the dishes are a little bland, although mostly are not too bad. I don't mind their food actually.  Here are 2 days' food from Rajah Inn:

2nd day delivery. From top left clockwise: tao yu port with egg / meat balls / cauliflower with broccoli / spicy Korean style chicken.

Fourth day delivery . From top left clockwise:

After Rajah Inn, we decided to go for another caterer.  This time, it's Hong Choo Catering.  The food they provided were delicious.  But their portions were rather small.  Here are some of the food provided during the 10-day trial.

Actually Hong Choo's portions were ok.  But after the 10-day trial was over, I, being itchy, decided to try another caterer.

This time around, we tried Le Xin Catering.  Their portions are quite good although not as good as Rajah Inn's.  But the food was tasty.  They had 2 types of catering.  One was normal food and the other was Asian Delight.  Since we were doing a 10-day trial, I decided to opt for the Asian Delight for $135.  That means on top of the 4-dish course, they will provide any asian staples like fried rice, hor fun, mee goreng, etc.

Their disposabl food containers come sealed. That is why I didn't take a lot of photos when they are delivered.  But what I like about Le Xin's dishes is that they have dishes that other caterers do not serve like prawn fritter, black pepper pork etc.  And for the Asian Delight course, there will be an extra dish of either hor fun, fried rice, pineapple rice, etc on every Wednesday and Friday.  Here are some pictures:

We had mee goreng on the first Wednesday and on the friday we had Thai pineapple fried rice on top of the normal 4-dish course.

They are quite generous with the extra dishes.  2 packets of fried rice for 2 persons.

Now that we have tried these caterers, we have decided to stop for the time being. But if I were to continue, I may choose Le Xin or Rajah Inn again.

SUPERMOM!

I recently did a shirt order for a friend who regularly meets with her kakis (friends) for outings/picnics once in a while.  They are families of children with special needs.

This year they decided to treat themselves to customized tshirts:

They are super moms indeed.  Unlike myself, their children are still young and they have a long way to go.  And yet, through all the struggles, long days, occasionally sick child, etc, they are a happy group of ladies who live life to the fullest with their children.

I'm inspired by their zest for life :)

Keep up the good work ladies!!

SPEICLA CHAIR REPAIRED

The Convaid Rodeo that we received from Make A Wish has been put to good use for 4 years.  Just recently, the crotch strap holder broke and DNR wheels was nice to sew a strong nylon strap across so that I could refit the crotch strap over it.

Sam was nice.  He didn't charge me for this.

Jonathan is growing steadily.  This chair is 14 inches and he's slowly growing out of it.  The seat depth is already too short for his long legs and now his legs are jutting out.  Will have to get him a new chair soon.  Maybe will get a customized one that cost 1/3 of the price of this chair.

If you want to see the whole chair when we first received it, it's HERE.

God bless!

DENTAL PRO CESARE 15 AUGUST 2014

It it takes me two says to recover from Jonathan's dental procedure at Day Surgery,  KK Hospital. What more for Jonathan?

All in all there were four teeth extractions with stitches for quick recovery.  Doctor had to remove 2 permanent baby canine teeth that didn't come out of their own. Because of these 2 teeth, the adult molars were pushed back and were in a clutter of 3 and jutting out. This happened on the left and right side of his jaw. Doctor also advised to remove those 2 molars so that it will not strain the gums there and for easy cleaning.

Till today, Jonathan says the gums are still sore and tells me he needs panadol to ease the pain. And the right nostril is also sore into which they inserted a breathing tube.

Here he was at the recovery just outside the operating theatre:

They placed him face down to allowed the blood or saliva to flow out.  But he was an unhappy patient 5 minutes into being fully wake.  He didn't like that they had tonsuction him to remove the thick bloody secretion that were stuck at his throat.  They refused to allow him to leave unless his throat was clear.

Thankfully after 15 mintues we were moved to the day surgery recovery room to feed him before leaving the hospital.

fasting was from 6am. He went intonthe operatong theatre at 3.40pm. Whole procedure lasted almost an hour. By the time after recovery, we left KK around 7pm.

Thank you Lord Jesus for protectong Jonathan and guiding the doctors and nurses.  He recovered and cleared his phlegm very quickly.

Here's what we were doing while waiting.

He wawanted the tag on his ankle.

DENTAL CLEANING 15 AUGUST 2014

I feel guilty right now.  H keeps assuring me it's for Jonathan's good.

Jonathan is having his teeth cleaned.  A tri-yearly procedure.

He saw me packing his bag last night.  He keep peeking at me when he heard the zipper being pulled.  He knew something was up, and also for the fact that both H and I were sometimes conversing in mandarin.

How to tell him?

Before he went to bed, he was already whining. As much as I do not understand what he was saying, I knew deep down he wanted to know what was going on.  But I couldn't because I know he will surely not go to sleep, no matter how tired he was.

What could we do?

Nothing but pray.

Thankfully he went to sleep rather quickly...also thanks to the cold medication I gave him after his supper.  He had caught a cold on Monday so hopefully later it will be a "go ahead".  Already postponed once and waited for another 3 months.  I don't want to have it postponed again, of which the decision will be made by the anesthetist.

I'm nervous with this type of procedure.  GA.  But I'm also thankful at the same time because he will not feel much tugging and pulling and  hearing all the drlling sound as the gadgets chip the plaque from his teeth.

Thanking the Lord for everything to run smoothly including the dentist and staff who will be attending to him.

I can only do one thing now to feel lest guilty....pray and believe that Jonathan will be willing to go later this afternoon and it will not be difficult to put him on the buggy and that everything will be on time and we don't have to wait too long.

Lord I commit Jonathan unto you.  He is in good hands....Your hands.  Thank you for keeping him full when he has to fast for 6 hours.  Thank you for Your peace is upon him.  And most of all that Jonathan will go in well and discharged and come home well.

We are supposed to be at KK by 12noon. Will update my journal tonight.

God bless!

SOME PHOTOS TO SHARE

Picture (above) was taken on one occasion when he was not well.  He want to sit with me in his bedroom. While he was leaning against my chest, I looked down and saw his beautiful eyes.  Took my mobile phone and snapped this close up.  Love it.  This speaks volumes to me.

And on another happy day, the little prince is happy to be my hat model as you can see in the following pictures:

I ordered these caps for samples and he does look great as he wears them :)  thank you darling for being my handsome model :)

WILL YOU TALK TO ME?

Tonight...as I lay down beside Jonathan watching him go to sleep, one question I asked him as he looked into my eyes:

Will you talk to me?   I need to share my heart with you and know what you are always thinking.

Today my heart was heavy.  Because of a statement I read.  It's funny how this happened.  But it's been brewing for quite sometime already and has been kept in one corner of my heart for a while.  So tonight, when I read that statement, I realised that in this world, besides God who watches and hears us, we, my family, are all alone.

Hard as I would like to admit, there are times when you say something and yet nobody takes the cue.  They are all about themselves and they expect you to do it for them.  I guess, nobody is as sensitive as I am....maybe this is even a selfish thought.

But what can I do?  I can't force others to share the same sentiments as I do.  So I have decided that I shall not bother any more because there are two persons more important in my life that need my attention and they are the ones who will care for me and share my deepest fears and sadness and happiness.

So I will ask Jonathan again.  Will you talk to me?  I want you to share with me your deepest frustrations and happiness because I care.  And I know that when you talk to me, you will love me when I share my deepest sadness and joys with you.....because you care.

God bless all you reads this journal <3 p="">

MOVING OBJECTS

Jonathan is kind of getting better in aiming his hand at an object and transferring it to another spot. But he still can't do with heavier/hard objects.  He knows when I'm recording him so the hesitation LOL. Most of the time he will scoot his body nearer to the item, then grab with his hand. But today he decided to use his leg. An easier way out.

I'm proud of what he can do.

Thanks for visiting. God bless!

HURRY UP MOMMY! OTHERWISE....

When Jonathan requests for help I better do it fast.  Everything must be chop chop quickly quickly.  Otherwise he will do this just to get my attention....

And this has happened many times because i get distracted by other things hahaha.

I'M BACK! BUT SLOWLY....

My last journal was in November last year.  Since then I have been busy and sleeping late and just no energy to be writing my blog until my family doctor mentioned about it.

Since last November, quite a lot has changed, things happening that should happened, Jonathan getting better and my health issues too.

Will write them down as soon as I can.  Right now....it's back to paying attention to Jonathan.  When you don't have an extra help, you just have to do everything on your own and there are lots to do.

Hope every visitor here is doing well.

God bless and thanks for visiting!