CHANGED WITH DISCOMFORT

Jonathan had his feeding button changed this afternoon.  The registrar had a hard time pulling it out from his tummy and the tugging and pulling didn't do justice to Jonathan who was cringing his face the whole time while the nurse was holding his legs really tight and me holding his hands and kept saying "you're so brave darling!"

Sounds like a torture.  It certainly was because after pulling the button out, the doctor had a hard time putting the new one in.  Probably because he had so much gel on his fingers and the button kept slipping off from the applicator.  I was feeling the pain in my own stomach just watching him do it.

Last year when he had it changed, the lady registrar was more gentle and she was quick with the change.  Today, the indian gentleman doctor was a little rough.  Cos when I turned to see that he was trying to pull the button out, he didn't place the applicator properly when there was a "plop" sound as the button came out.  I guess I should give him a benefit of a doubt.  The applicator may have slipped from it's original position.

I'm just glad I was with Jonathan the whole time.  The nurse suggested I leave the room earlier cos she thought I wouldn't be able to take the sight of blood.  No way am I going to leave Jonathan there with them alone!

Once the button was in, Jonathan said the pain was "no more".  Gave him milk before we came home, but then he started to feel unwell.  Probably cos of the anxious and nervous afternoon kind of stirred his stomach juice.  But at least now he's better.

When the cap stopper broke, I actually thought of using superglue to glue it back but Harith didn't want me to do that ... haha...Just trying to be innovative.  Then I used the tube head but realised that even if I inserted one end of the head into the button hole, the other opening will allow water to leak out.  Somehow, the nurse also showed me the same method.  She said we just need to find a way to seal off one side.  So this is one way we can save money for as long as possible.

Now whenever Jonathan starts putting his hands on his tummy to try and pull the button I will remind him about today and he will move his hand away.  Hopefull he will remember and stop pulling on his button.

My friend May told me about HOJO tape.  maybe I will try that to secure the cap down so this little prince will not yank it open again.

So another S$227 spent for the button.  Seems like there has been a quality control check on the BARD button earlier and production was stopped for a few months.  I think the button quality was not up to par.  The doctor even told me that there has been caps breaking off lately.  This new BARD button looks sturdier.  Hopefully it will last more than 13 months.

The things that our children with special needs have to go through :(

But they are a strong bunch of kids :)

LOVE THIS ...

He woke up on Christmas day morning and I was lying down next to him.  Jonathan loves to snuggle up to me especially when he sees me once his eyes open.

BUTTON'S BROKEN CATCH

It's been slightly over a year since we got the new button changed that I mentioned in my earlier post that now we have to get it changed again.  The last change was November 2008.

The tiny catch on the button cap that covers the button hole after it's closed, broke.  Harith blamed himself for being rough when he was feeding Jonathan some water, but it's not his fault.  Firstly, I think the material they use for the button has now become low quality.  Secondly, Jonathan has been pulling at it so I guess, with the poor quality and the tugging, it just snapped.

It's the weekend so we won't bring him down to the KK A&E cos the first change we did, it cost us about S$450 and the reason they gave was because we didn't go to the clinic and A&E charges are different.  Well then we didn't have any choice because it was either do it now or risk having the other half go into Jonathan's tummy and the doctor said may have to do minor surgery to get it out.  That was then ... and I found out from his surgeon much later that there is no harm because it will come out with when Jonathan does his business ><

Thank God the valve is still ok so I'm taping down the cap after every feed with either a strip of surgical tape around the button top or half a piece of tagerderm to secure the cap down tighter.  At least using tagerderm instead of surgical tape prevents the skin around the stoma from getting red.

Hopefully the paediatric surgery clinic will have a slot for me on Monday.

Why am I still awake at 5.15am?  I don't know.  Just somethings keeping my mind active.  Should go back to sleep soon :z

OUR BOY HAS GROWN

Two days ago, we received this.

It's so obvious that our little boy has grown up.  For every boy in Singapore who turns 13 will get a notification from the Ministry of Defence that we have to apply for exit permits if Jonathan was travelling overseas.

Jonathan will be 13 come February next year.  How time flies.  How fast he has grown.  How we have come so far with him.  How we have seen his progress from a quiet toddler to a boy who now babbles non-stop.

Last night while he was waiting to go to bed, he started babbling and laughing.  I went to his room asked what he was doing.  He said "praying in tongues".  He's grown, has told me he prays for his own healing.  He told the Lord he wants to speak words and start walking.  I'm thankful to the Lord for his maturity.

Since he's grown taller too, his muscles are stronger.  The mat that he's been using has started to peel under his powerful feet kicking and dragging.  First it was a bubble under the cover layer of the mat.  Then, it started tearing.  And so the tear became bigger and Jonathan's hands was always caught under the cover layer.  We decided to peel and cut off along the lines as you can see the cutting knife in the picture below.

 Now the mat looks like this.  But because of Jonathan's constant moving and pushing, the tear has now become gone beyond the white patch haha.  Soon it will be totally white!

My friend will be giving me her mat because her daughter is not using it anymore.  So the time is just right.


Hope everyone had a wonderful Christmas.  MERRY CHRISTMAS TO ALL AND GOD BLESS YOU ABUNDANTLY!

A NIGHT OUT IN TOWN

Harith found out the a handbell choir was performing at the Esplanade Concourse. So we bundled up Jonathan in long pants and thick tshirt (just in case it got cold) and went down last night.

He sat through about 3 songs ...

After the performance, we went to the rooftop for some night viewing ... Jonathan's favourite ... buildings. He was fascinated by the sight cos he's never seen them upclose at night.

This is the Shenton Way view

This the Marina Boulevard view (below is actually the Media Library @ Esplanade)

On the way home, couldn't resist taking a couple of pictures. We got home around 11pm. Jonathan did good. He didn't feel giddy and this time ... yes ... I fed him first before heading home :)

Pictures from the taxi

And now I leave you with a short clip of the performance.

WISHING ALL MY FRIENDS WHO VISIT THE BLOG A MERRY CHRISTMAS AND BLESSED 2010!

CLEANUP

Harith made a point to clean up the house today.  Loads and loads of things that we threw away ... and loads are still around! haha.  But it was good to clear stuff what have accumulated for so long.  To have him help is surely a bonus for me.  I'm thankful he's the clean one! haha.

Me ... sniffling now because I get really affected when my the dust hit my nose.  Now the storage places are neat.

Thank you Jesus :)

CAROLLING

Jonathan and I went for a stroll this evening after dinner with Harith.  He had to go get some stuff from Tampines Central and I didn't want to go.  But Jonathan wanted to take a stroll so off we went.

Heard some singing coming from Living Hope Methodist Church that is just one block (of flats) from where we stay.  One block meaning about 200 meters away only :)

As we got closer, the singing became louder.  The group was practising at the lobby of the church facing the road so their voices were echoed off from a block of flats facing the church and it was quite loud.

We were actually on the ground pavement below the staircase earlier.  The only spectator standing there watching them sing but a young boy on bicycle was hiding in one corner.  Struck up a conversation and found out that his mom and sister are singing there.  They are practising to perform at an old folks home.  They sang a mixture of Christmas carols in english and chinese.

I miss carolling.  When we were younger, we used to go carolling with the church on Christmas eve till early hours of the morning, ending about 3am.

It was a nice night stroll ... windy and cool ... and hearing the carols were nice :)

OH WHAT NIGHT!

We were at the City Square Mall yesterday morning.  A brand new mall near Serangoon and the first ECO-friendly mall in Singapore.  Very spacious and Jonathan likes it that way.  Loads of space to walk and you don't bump into other people.  But then again, we were there Monday morning so the crowd hasn't gathered.

The HUGE mistake I made was not bringing his milk feed.  Thinking that we will be back by 1.30pm, I decided that it's not necessary.  I was wrong and regretted it.

It's always like this with me.  You think that after 12 years of caring for Jonathan, I would at least have the "brains" to bring a milk feed for the just-in-case-we-run-late.  NOT!

He was ok on the return trip home.  But towards late afternoon, the retching started.  I guess it was the tummy that got windy and it just didn't sit well even though I gave him milk.  So this stretched on till around 6am.  His on and off sleep, the retching got so intense at 5am.  But by 6.30, he was beginning to show signs of recovery.  Thank God I cooked some porridge for storage and gave him the porridge water and after changing his diaper, both of us fell into a deep sleep only to wake up at 11am with him soaking wet from top to toe in urine because I didnt wake up to change his diaper.  I'm surprise he was still able to sleep while the wetness creeped into his pajamas.  That shows how tired he was!  Gave him a really warm shower which did him some good cos he was chilly in the wet clothes.

I'm thankful he's ok now.  Tired from last night's episode but at least he's smiling and happy.  We'll be taking a nap soon.  "WE ' LL" ... yes ... him and me :)

MARINA BARRAGE ~ PHOTO GALLERY

As I mentioned in the earlier post, we went to the Marina Barrage on Friday (11th Dec).  It was almost noon when we got there cos we woke up late ;) heh heh.  Enjoy the photos!

Harith driving brother's car.  Jonathan's favourite road ... the East Coast Expressway where he can see the skyscrapers.

 Drove by the Singapore Flyer.  Jonathan says he wants to go for a ride.  That will be our future excursion!

 

 Finally arrived at the Brarage

First walk ... along the bridge ... though we didn't walk to the end

 

 

 

 

Then off we go up to the roof garden (if that's what they call it ... haha.)  It's just a rooftop field actually.

 

 Asked Harith to do the pushing.  The "hardly exercise me" didn't have the stamina LOL!

 

Here we are at the rooftop

 

Making sure Jonathan catches the view from where we are

 

 

 The field ... the day was sunny but very very windy.  Loved it!

 

 

 

A view from the top

 

 And back down we go

 

 Harith had the camera.  He took a whole lot of scenery that I didn't upload but got us in this picture.  I like this ... us being at the side heh heh

 

 A trip to the Esplanade finished our outing that day.

 

 And it would not be complete if we didn't stop by the Media Library @ the Esplanade.

 

Got tired of waiting and decided to kick off his sandal..haha!

 

Jonathan enjoyed the outing that day.  The tiring part was him having to sit with me in the car.  When we are in a cab, we take turns to carry him.  But it's worth while as long as Jonathan enjoys himself.  I must say he did really good.  Praise the Lord!

NEED MORE SPACE & TIME BUT ACCOMPLISHED ALOT!

The shop owner ran out of space on this decorated board.  :)

My brother loaned us his car while he and family are on holiday.  We went to the airport on Wednesday {9th dec} night for a stroll.  First we took a cab to my brother's to pick up the car.  Jonathan thought we were there for a visit.  But when we parked ourselves next to the car, he looked at me and then at the car.  Got all excited when I picked him up.  He was chatting non-stop to and from the airport :) 

The whole night's excitement kept him awake right up 2am!

But it was a nice treat.  We woke up late Thursday morning and
went to Compass Point mall for a stroll.

Came back and had to finish up a batch of tshirts but was delayed because the vinyl wasn't cutting properly.  The dark blue vinyl seems to be thicker than the other colors ... which I thought odd.

I increased the depth of the blade but after cutting, it was still difficult to peel.  Sort of like the vinyl has a self-healing property LOL!

Well...it took me hours just to get that done ... right into Thursday night and when Jonathan woke up at 4am looking for me, I had to stay be his side and resorted to this:

Yup ... I had to use the flashlight.  Didn't want to turn on the bedside lamp cos it might wake the little prince.

My handphone camera had a built-in light.  I actually had to work like this:

It was that dark! LOL.  But I finally finished them at 5am :)  When to sleep around 6am and as usual, we woke up late again but we brought Jonathan to the Marina Barrage today.  More pictures later!

PTL finally finished the batch of shirts this evening and got them delivered.

Now on to another project.  I've yet to start on my Christmas cards ... looks like may never happen :(  but we'll see!

FOR THE SAME PURPOSE BUT DIFFERENT

My good friend Penelope took some pictures on behalf of the Spastic Children's Association of Selangor FT in Kuala Lumpur Malaysia. See SLIDE SHOW

Though just a few pictures, but it's nice to see the children having their therapy.

Jonathan is attending SCA of Singapore. Just that in Singapore, the facilities are better.  I hope that one day, more awareness is made and that the SCA of Selangor will have their facilities improved.  Hopefully they will have more funds going their way.

Thanks Penny for sharing the photos with me.

FLU DAY 3

He slept much better but was fidgeting alot, wake and sleep, wake and sleep ... this type of pattern throughout the night.

At 4am {again}, his nose was stuffed up with mucus.  Not the runny nose type but damp.  Had to give him a dose of runny nose medication.  This morning when we woke up to the doctor's we went.

He resented that.  Was angry when I mentioned the visit to the doc's.

Diagnosis:

Not viral flu.  Allergy.

Just by looking at the wrinkled part below his eyes, checking nose and inner throat.  He struggled with the tongue depressor, something he doesn't want to be reminded of.  Doctor said it's the allergy season.  Saw many children with asthma.  His allergy to the struck and that's why it's full blown.  He said if we move him to Perth or Japan, this whole allergy issue will be a thing of the past :)  If only :)

Well...for now we just have to stick to our not so clean air.

So ...  I refused antibiotics for him.  Prescribed nasal spray and 190 ml of medication that he has to complete to replace the antibiotics.  Should clear within 3days.  If not ... antibiotics.

T.I.R.E.D.

Time was 4p.m yesterday. and Jonathan's nose started becoming more stuffy.  I could hear the stuffiness in the morning but thought it was just a morning thing.

I decided he needs his medication so gave him a dose of Zyrtec and Axol.  For Jonathan, he doesn't have runny nose when he catches a cold.  His nose is stuffed up and drains from the back to his throat.

Ready for bed @ 11.30.  His eyes are droopy and he yawned.  Gave him his milk feed with another dose of medication.  Changed him into his pjs and carried him to his bedroom.

Eyes refused to close even though it was 1am.  He wanted another set of milk, said he's hungry.  I gave him half thinking that too much milk may give him diarrhea. He tried to sleep but the stuffy nose just wouldn't let up.  Had a lot of saliva cos hard to breath so had to swallow hard.  Kept turning and had wind in his tummy.  I was getting tired and prayed for strength because just don't know how long this would last.

Darling boy asked for milk again at close to 3.30am.  Gave him another half and while feeding him, his arms hit my hand and water spilled onto his bed, making it wet.  So brought him out to the mat in the hall and changed his bedsheets.   Finally slept around 4am and I dosed off after changing his diaper.

This afternoon, he refused to nap again, although I very much wanted him to rest.  So I hope without sleeping this afternoon, he will rest well tonight and I can get my rest.  My head is getting heavy already :)

But I'm thankful he's better and I was able to finish some work.  Thank you Jesus :)

ANOTHER MONTH HAS ENDED

Today's the last day of November.  So much has come and gone and there's just lots of things to do.

My house is still in a mess.  I'm embarrassed to even take a picture of it!  But I guess I should cos I'm going to make a point to clear up all my tshirts, scrapbooking stuff and make the room really neat and hopefully they will stay that way for a looooooooooooonggggggg time!!!!!

Jonathan's been good in health and praise the Lord for that.  His feet and hands are not chilly to the touch nowadays.  Like what Teacher LK said to me, it's a phase that will go away.

This morning, I had a surprise call from Jonathan's school telling me that there is a list of secondary school and book list for me.  Wait a minute!  What secondary school list?  Pris was talking and I had to keep calling her name to get her attention.  Finally, I said "Pris, I'm Serene!" to which she started laughing!  haaaahaha.

It was a fun mistake but something that made my morning.  Of course I would love to hear from her! Especially if it was true that Jonathan is going to a secondary school.  We had a good laugh.  Genuine mistake on her part and no, I'm not angry.  I like Pris too much!

It was sort of like a affirmation of sorts.  That things are ok for Jonathan  ... that one day this will happen.

I've been quite impatient lately with regards to Jonathan's progress.  I get angry, I cry, I complain to the Lord.  But yesterday, when I was reading a Christian novel, something said by one of the characters struck me.

All in the Lord's time.  Then I remembered this:

John 9 (King James Version)

1. And as Jesus passed by, he saw a man which was blind from his birth.
2. And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?
3. Jesus answered, Neither hath this man sinned, or his parents: but that the works of God should be made manifest in him.

When I read verse 3 in the New Living Translation, it said:

 ³ “It was not because of his sins or his parents’ sins,” Jesus answered. “This happened so the power of God could be seen in him."

How long I have to wait for Jonathan to receive a miracle, I don't know.  But I do see the power of God working progressively in Jonathan's body and his life.  I wait for that day when the Glory of God is magnified and praised.

For now, I'm satisfied that whatever is happening, will soon be a testimony.

Thank you Lord for giving me your patience but do hurry .... sometimes I cannot wait to take walks with Jonathan with him walking next to me :)

IF ONLY ... TURNED POSITIVE

Today ... 12 year olds in Singapore receive their PLSE results.  If Jonathan were in the mainstream school .... he would be getting his results too.  I will be the anxious mother, waiting for him while he gets his results slip.  Then we will pray and ask God for wisdom as to which secondary school he will choose depending on his results.  We will go shopping for secondary school textbooks, uniforms and new school shoes.

If only ...

It's hard when I think about this because then it brings me back to the day he was born.

If only ...

But!  There is a consolation that this "if only" had turned into something positive last evening when I was invited to attend a dialogue session with a group of 33 professional educators and principal taking their Masters of Science (Early Childhood Education) from Wheelock College & SEED Institute.

My sister's colleague (long haired pretty lady in front of me and next to the only gentleman on the left side) who's one of the students asked if I could help the class understand early intervention for a child with special needs.  I was one of 3 parents the class invited, but the only one with a child who has cerebral palsy.

I was glad I could go because Harith was not working so Jonathan spent the evening with daddy.  I asked Jonathan if he wanted to join me, he said "NO" very quickly actually  :)

I started off explaining Jonathan's condition and why he had cerebral palsy and went into the intervention program that Jonathan received from Rainbow Centre.  There were questions (only a handful) but I guess what they needed to ask was already covered by me {I HOPE!}.  It was almost like a monologue cos I talked alot! LOL! But I'm glad Professor Karen Whitla from Wheelock College, Boston (extreme right in black blouse) was there to guide the flow of the whole session.

Before I went, I had some picture exchange communication cards (PEC) from Jonathan's file and I gave each teacher one strip to show how Jonathan used them to communicate.

These cards were done using Writing with Symbols software

I thoroughly enjoyed the one-hour time together.  I hope it brought a better understanding and broadened the knowledge of educators who have not been in contact with children with special needs.

And...before I went for the meeting, I had 15 minutes to spare and decided to drop by Paper Market @ Raffles City to buy these :

Valerie is going to flip when she sees what I bought cos she would offer them to me FOC!

and this:

Ok...I did mention that I wasn't going to make any Christmas cards this year because of my busy schedule.  But I just couldn't resist the urge!  Last year's cards in my earlier post HERE were 6X6 inches.  This year, I may make them in DL sizes.  May .... haha and might happen.  We'll see :)

I'm just so happy that I finally finished Nick & Stella's church wedding invitation cards.  My production line was simple.  All I needed to use were the cutter trimmer, Crop-a-Dile Chomper corner punch, Scallop punch, double-sided ribbons, double-sided tapes, 3D sponge dots and of course, my laser printer.

I can only show the actual card when I receive it as an invitation from them. LOL!  I enjoyed making all 200 plus some-for-mistakes-just-in-case cards.

While in between breaks, I will let Jonathan sit up for a while on his buggy cos his new chair (which I will post later) is due only in March.  Sometimes while waiting for me to carry him to the buggy, he just can't wait and will scoot to the buggy on his own.

Impatient?  I don't think so.  He just wants to help ... making it easier for me.  But of course I had to scoop him up before he injured himself with all the furniture surrounding him.

Ok...I'm off to finish up a design for a friend's tshirt.  I'm supposed to come up with boy's names design after I finished the A to Z Girl Name designs (SEE HERE) and so far...I haven't done a thing!  Yikes!  Will have to burn the midnight oil again!

Thanks for dropping by!  And if you want to leave a comment, please give me an email link so that I can reply :)

KAWAII PICTURES

NOTE:  Pictures taken indoors and closeup so not so clear ... :)


This small sticker pictures were taken almost 12 years ago using the instant Japanese photo machines that we find at local arcade centres.  We decided to have some fun and took this for $8 (I think! can't remember) and we were given one shot.  This is made up of different size pictures all squeezed into a 4R size sticker card.

When you are in these types of booths, you have to be quick to get ready.  You sit in front of the computer screen where your faces will appear.  Then you kind of adjust yourselves within the screen size, squeezing yourselves as close as possible.  So you can see, in this, Harith had to stand behind just to fit in.  haha.

This is like a sticker and the pictures are still in very good condition.  The colors haven't faded after all these years.




This morning, we were at White Sands Pasir Ris and when we walked passed the arcade, I told Harith we should do it again!  Me getting all excited like a young girl ... LOL!

Hilarious! Cos firstly, Jonathan was no longer a baby.  Trying to get him to sit more upright and making sure his face is right where the camera is was not eezzy!.

What's worst was that the instructions were all in JAPANESE!  You are given 6 shots.  When the options for different layouts appear on the screen, you have 20 seconds to make your decision, otherwise, they will take the default design and snap away!  haahaha.



First shot was good cos I just kept clicking away and we were ready for the first snap.

Then we had to start choosing different layout options for another snap.  I was just pressing away because of the limited time given.  Still it turned out pretty good.

Finally ... for this, I chose "2 heads in the heart with a solo picture on the left" layout.  Harith and I positioned ourselves and the camera went click.  That done .. we had abt 10 seconds to get Jonathan ready for the solo picture.  As you can see,  it was just impossible to put Jonathan in an upright position and the camera when "click"!

We had a good laugh because everything had to be done quickly!  And with us like this...20 seconds is just way too short!

After having our photos taken, we had to go to another both to add any decorations and embellishments.   And again, every click has to be made within 10 seconds ... instructions in Japanese and the staff not very helpful.

Harith kept saying ... $9 for rushing?  hahaha.  But when the photos came out, ok...$9 is ok for a good fun.  How often do we do this?.

I guess booths like these are meant to be fun for the users.  How I wish they had the instructions in English.  They had a typewritten one pasted on the wall.  But it would be impossible to read them and try to manage the machine all at one go! LOL!
To me ... it was worth the fun and laughter and Jonathan said it was fun too :)

And yes ... they come as stickers too.  Lets see how long this one will last ... perhaps a decade or more?  We'll see!