XBox 360 Kinectimals

Just bought this Kinect CD last week and only opened it this evening.  Although I thought this CD might be good for Mikaail, I realise that he gets excited really easy and could result in him getting fits! 

So I am thinking of a swap.

Certificate of Achievement

I am so proud of Mikaail.  This year he received the Best Conduct certificate.  He is ever so polite and courteous though he is always teasing me.

Almost every day, he either tells me that "today mama in my heart" or "today mama outside my heart" especially whenever he is eating.  If inside his heart means he is prepared to share his food!  He is so cheeky as always too.

Sometimes he likes to call me by my name and other times he will call me mama.  Then he will go on to say, "Normah, no.  Mama" and when he wants to be cheeky, he will keep calling me by my name.  Whenever he does that, I will tell him that Normah is not in, sleeping or anything else except with him.  Then he will call "mama" - just so cheeky but I love him anyway!

Centre for Enabled Living @ Singapore Expo

Went to Singapore Expo this morning to find out what are the other the options available for Mikaail.  I am fairly familiar with what the Centre can assist the special needs person.  I had previously written to them for handicap carpark label as well as the levy concession for handicapped person. 

With more Singaporean aging, the Centre does show/connect you to the relevant bodies.  Previously, I had to surf the net to look for assistance as there was no particular place where you can actually walk in to seek assistance or enquiry.   According to the Centre representative, seems that if a child is born with disability, the parents are immediately directed to the Centre for assistance.

Through the Centre at the Expo, I found out that the Spastic Children's Association also has a Day Activity Centre which cares for adult handicapped person from 9 am to 4:30 pm!  The Centre representative asked us what are we going to do for Mikaail when he turns 18!  That's 5 years from now and he will be 18 sooner than we think!  So the Spastic Children's Association could of course be an option as he is a student for several years now.

We took a picture at one of the participating booth.  Cant recall which booth though!

MRT Ride on Friday, 18 November 2011

It was a pleasantly smooth trip for us today on the MRT.  Mikaail has 2 medical appointments: one in National University Hospital and the other in Tan Tock Seng Hospital.

For a start, I was unaware that the MRT station at NUH is now opened.  My husband, Alex, told me that the station at NUH should have been opened since the Circle Line is now opened.  As I am unfamiliar with the stations, I called SMRT to find out where I should board the trains.

The SMRT operator was quite helpful.  She told me from Woodlands MRT station, I would need to change trains at Jurong East then board the train bound for Buona Vista.  Then from Buona Vista, board the train towards Kent Ridge which is 2 stations away.  Total travelling time was barely an hour and this includes waiting and transfer time.  To board the train to Kent Ridge, we need to walk about for about 5 minutes from Buona Vista station.

As it was offpeak time, there was no rush at all.  The ride was absolutely smooth and manoeuvring in and out of the MRT was a breeze!  I just couldn't believe it.  The fare for each of us from Woodlands MRT to Kent Ridge Station is $1.89!  A taxi ride from Woodlands to NUH would have cost us a lot more!

And one of the other benefits for taking the MRT was there was no need to transfer Mikaail in and out of his wheelchair into taxis.

Gifts from Make-A-Wish Foundation

This wheelchair, 15" Miki Tilt-in-Space Reclining Wheelchair, is specially custom made for Mikaail, courtesy of the Make-A-Wish Foundation.  After his scoliosis operation in May this year, he needed better back support as the standard wheelchair would not be able to provide.   

More gifts: Sculptured balloons, towels and angry bird back pack

Make-A-Wish Foundation Party

Group photos taken at Make-A-Wish Foundation party which was held at the Grand Hyatt Hotel yesterday.  Very impressed by the warm reception given to the recipients and their families.  There were some games organised by the volunteers.

Left to right (back row)
Rose, Mummy, Jaye, Sin Ruey, Asmah, Andy, Mariah

Right to left (front row)
Firduas, Sarah, Mikaail, Elisa, Serena, Daddy

Left to right (back row)
Ain, Rose, Jaye, Elisa, Firdaus (partially hidden), Mummy, Daddy (partially hidden), Mohanty (therapist), Mariah, Asmah, Andy


Right to left (front row)
Sarah, Sarah, Mikaail, Firdaus

Mikaail eating rose apple

While I was sitting in front of Mikaail updating my blog, he suddenly reached out his hand and touched the fruits in front of him and asked me what it was.  I told him it's called rose apple (jambu air) and asked him to have a bite.  After his first bite, he said it's nice and he eventually ate about 1/3 of the fruit.  He usually eat fruits after some persuasion.  This time was more of an impromptu action.



Wish Come True

It was a rather spectacular event I must say of the Make-A-Wish Foundation party for the special needs children.  Each of the child has their own personalised board as shown below.

If I could really wish for Mikaail, it would be for him to at least be able to see again.  He lost his vision, I believe, due to negligence or insufficient medical care rendered to him by the doctors and/or surgeon during his initial operation due to haemorrage.

Despite the medical professionals assuring us that the eye nerve was "miles away", Mikaail still lost his vision!  What do they have to say?  Nothing useful and comforting!!

There were lots of food provided for all the guests.  Mikaail enjoyed his spaghetti with tomato sauce, french fries, chicken nuggets, sweet & sour fish slices.  I had seafood fried rice, fried baby siow pai chai, sweet & sour fish slices too.  

Special Angel sang by Mikaail Ermin Tan

This morning, before we set off to the Make-A-Wish Foundation party, I asked Mikaail if he was going to sing a song.  He gamely said yes and gave me 4 titles:

1. Special Angel
2. Hero
3. Banana Phone
4. Ring Ring

Told him to select only one and he said he wants to sing 4! 

This song, Special Angel, has some sort of an emotional attachment to me I find that it is a very meaningful song.  When we were at the Make-A-Wish Foundation party earlier this afternoon and with Mikaail singing this song, both daddy and mummy, suddenly overcome with certain unexplained emotion!

Mikaail's Hobby

When I previously spoke with Christine, from the Make A Wish Foundation, I told her how Mikaail loves singing and dancing.  Being severely handicapped, he sings in his own very special pronounciation and dancing by moving his left hand in various position.

I will usually log on to YouTube to sing with him several songs and one of the songs we will always sing is Special Angel by Bobby Helms.  I told him that he is my special angel when he was a baby and he will always be my special angel.  He usually tells me that I am in his heart but not when he has his favourite food ie half boiled egg and essence of chicken.  Then I will be out of his heart!!  Little rascal!!  When he is in the mood to tease me, he will call me by my name!

This is Mikaail singing at the Make-A-Wish Foundation party.  I am surprised that he is so relaxed and happy singing using the microphone.  As he has lost his vision, he does not know the number of people there  listening to him so there is no stage fright!! :)

Pre-Make A Wish Foundation Party

Mikaail is all excited about this party and also told us he wanted to wear a blue shirt.  Yesterday, aunty Yaya went to buy him his shirt - a little big though as the shop didnt have the shirt in his size.

A couple of days ago, he asked who are coming to his party then he also asked if a couple of his cousins are coming.  I told him the who's who on his guest list excluding him - just to tease him.  Then he said he is sad - put his head down and show his sad face.  He is quite a "drama" fella then I told him I was only teasing him and instantly he is happy again!

Gift from Make A Wish Foundation

Mikaail will be receiving his custom made wheelchair, courtesy of Make-A-Wish Foundation this Saturday, 22 October. This wheelchair is customed made to suit his as he body structure.  He had a scholiosis operation in May this year to correct his curved spine. 

Gift from NUS Students' Community Service Club

Mikaail received his gift from Shai, a student of NUS Students' Community Service Club on Tuesday, 11 October. As usual, he will usually bring his gifts home to be opened and shared with mummy and daddy.

About a month or so ago, we received a note from the school asking what we would like for him and we opted for shorts.  Understand that these gifts would be paid for by the students themselves.

There was a small party held and the

Class photo taken on Children's Day Celebration

Mikaail playing Angry Bird game, assisted by Geylang United player

Playing game - assisted by Geylang United player

Shower

A busy weekend as always.  A very hot day and showered him to cool himself down a bit.  Mikaail will usually help by scrubbing himself a bit.  The commode gets rather slippery and since he cant balance himself, he got worried that he might fall into the hole on the commode.

I literally just realised that I should have covered up the hole when he is having his shower and only lift off the cover when he is using the toilet!

Giving his face a washing with Garnier 3-in-1 face foam.  As a teenager, acne has started to surface on his face.

Shampooed his hair





Drying himself up after shower. 

Braille Lettering

A friend, Cheng Choo, from the Gospel Mission to the Blind Ltd came to my home a couple of weeks ago to show my sister how to create the braille letterings for my son, Mikaail.  She has very kindly loaned us this metal template and also taught us how to create the braille letterings on sticker paper. 

So far I've done a couple of braille alphabets in the hope that Mikaail will be able to relearn his alphabets.  I must say it is rather difficult to figure the alphabets based on the dots!  Anyhow I will continue to teach him how to recognise the alphabets.

Did Stroke Rob Mikaail of his Vision?

I used to think that Mikaail lost his vision due to stroke. Now, 5 years on and on hindsight, I don’t think it was stroke. Stroke did contribute to the loss but I felt it was the mismanagement by the professional medical team who attended to him during his hemorrhage surgery that led to the loss! 

During Mikaail’s hemorrhage surgery and his stay both in the ICU and general ward, the brain-eye doctor could have examined him but nothing was arranged until months after his discharged.

About 2 weeks after Mikaail was discharged from the hospital, my husband was shocked to see that Mikaail’s iris was “transparent”. We rushed him to NUH A&E. He was eventually diagnosed as having retinal detachment. Under normal circumstances, patients with retinal detachment were supposed to be operated on immediately. Unfortunately, the doctors did not think it was necessary until several weeks later. Thereafter there were several tests and surgeries done to his eyes to supposedly try and save his vision but nothing positive came out of all the surgeries. If only they had considered the emergency operations earlier, then perhaps there may be a chance that he would not have lost his vision.

Then there were calcium deposits appearing in both his eyes and the doctor told us this came about because the eyes are weak! Our hopes of him ever regaining his vision were completely dashed.

So did stroke cause his blindness? I wonder.

How to care for scoliosis surgery patients

Mikaail’s operation went smoothly and the surgeon is also very happy about it especially since the surgeon was out of town 3 days after the operation for 10 days.  Mikaail was discharged a week after his operation.

At the follow up appointment, we were told that his wound dressing needs to be changed. His wound dressing was changed a day before he was discharged.  One of the nurses showing us how to change his wound dressing.

Wound Care

• Keep the wound dressing clean and dry. The doctor said that it is ok to shower as the waterproof dressing will protect the wound. Being the kiasu parents, we decided to sponge him for the moment.  We started giving him a bath about 3 days after his discharged from hospital.
• Over the next month or so, we need to change the dressing twice a week for the first 2 weeks and weekly for the subsequent weeks till another follow up visit a month later.
• The nurse told us that when cleaning the dressing, we need to look out for any increase in redness around the wound area, swelling, gapping of the operation wound, pus/dampness around the wound area or we would need to go to the hospital for a check.

Home Environment

• Sleeping on a bed with a firm base is encouraged.  The funny thing is that though the hospital encouraged us to do this, there is not one available in the hospital.
• We bought Mikaail a gigantic wheelchair as this unit can be tilted and also set to a lying position so we can minimize movement to allow his back to cure properly.

Diet & Medication

• Though there is no special diet or fluid restrictions, the hospital food is so bland.  I really wonder who plans the menu!  This morning, one of the doctors who saw Mikaail was surprised that I ordered "mee rebus" for his breakfast and the doctor said "hospital food is much to be desired!".  I personally feel  that the meal planner/dietician should ensure that the food served to the patients should be healthy and at the same time tasty as the patients need to recover from their illness!
• No special medication prescribed to him except for paracetemol and ibuprofen to be taken for 2 weeks or when there is pain.

Physical Activity

• After the scoliosis operation, it is advisable to turn around with your entire body and feet instead of twisting your waist and back.
• In order to keep your back straight, do not bend at your waist.  Instead bend at your knees.
• Advisable not to carry heavy loads of more than 5 kg (10-15 lbs).
• Shift your body weight so you do not remain in the same standing/sitting position for more than 30 minutes.
• Treat your back with care.
• A good form of exercise is walking.  Take short walks daily and gradually increasing the duration or distance of your walk as you recover. Climbing stairs is fine.
• As you recover, you can slowly increase your level of activity.
• If you feel more pain than usual after an activity, you many have overdone your activity. Stop and take it easy for a few hours.
• I dont think Mikaail will be prescribed with a brace.  However, if you are, do remember to wear it when you are awake.  No need to wear the brace when sleeping.

Scoliosis Operation: Day 4 (Saturday, 14 May 2011)

Four days after Mikaail’s operation, we gave him a super quick bath with help of 2 of the ward nurses. I’m sure he is refreshed especially after sponging him with water instead of the aloe vera wipes.

Today, Mikaail complained of back pain and he said, “so, so, so, very, very, pain”. Usually he is very tolerant and if he complains of pain, it must have been very painful.

When I saw the cut on his back, it was really scary! I could see the blood patches especially towards the end of the cut and the mid section. The length of the cut is approximately 14” long – almost the full length of his back towards the buttocks. 

Scoliosis Operation: Day 3 (Friday, 13 May 2011)

Mikaail had a bottle of Brands Essence of Chicken (42 g), half of a half-boiled egg, soya bean drink (15ml) for his first breakfast today, after 2 days of no food, no drink. So far he was able to keep his food and did not throw up and that’s a good sign.

For lunch, he had about 1.5 tablespoon of tofu and 17 ml of Paediasure milk followed by 17.5 ml of paracetemol and about 10 ml of water. Half way through his medication, he said he is full of medication!  Usually he will say which food he is full and which he will continue. 

This is his lunch:

Looks are so deceiving!  The burger is really soggy as the mayo sauce and butter spread on the bread make the bread really yukky!  Then there is the fish fillet on the bread which is just as bad as the bread.  How does the dietician plan the meals?

Considering that he is just out of a major operation, I feel he is managing the operation fantastically well!

He was transferred from ICU to the general ward late this afternoon.

Scoliosis Operation: Day 2 (Thursday, 12 May 2011)

Mikaail is still not breathing on his own and had to be hooked on to a ventilator to assist with his breathing. We presumed that he was drowsy due to the effects of the general anesthesia and morphine. Doctors said that the machine needs to show up more “S” as this signifies that he was breathing on his own.

We consistently encouraged him to breathe.  Told him that he needs to breath harder to get the "A" and "S" on the computer screen.  So each time we tell him, he will breathe then he stops.  So the doctor said it is unsafe to remove the ventilator for the moment.

Scoliosis Operation: The Day!

Getting Mikaail ready for his operation.

The whole operation took about 6.5 hours!

His stay in the ICU.

He is still not breathing on his own very well and needs a ventilator.  He is also running a slight fever and maybe in some pain as well as his heart rate is increasing as well.  The plan was for them to weane him off the ventilator then administer morphine to help him control the pain.  Such a young person to go through a major operation and when you see all the wires, it is so heart breaking!!!

We waited for his return for more than 6.5 hours although the surgeon told us the operation will take about 4 hours. He was wheeled into the Operating Theatre at about 8:15 am. Anyway, at 3 pm when I checked with the staff at the Operating Theatre reception desk on whether the operation is finished, the lady told me that the operation is still in progress. He eventually was wheeled into the ICU ward at around 4 pm.


The number of wires and tubes stuck to him is really heart breaking! At 12 years old, he’s gone through a real great number of hospital stays!!

Met a couple who told me that their daughter is also going for the same operation after her Primary School Leaving Examination in another hospital.  She wanted to have a view of another parent feedback as she overhead the doctor talking to us about scoliosis.  We told her to expect at least 6 hours though the surgeon had intially told us that it will be 4 hours.  As Mikaail was just wheeled into the ICU after his operation, we could not provide much information.

She said her daughter's condition is considered an inverted "S" with a 60/70 degree.  Mikaail's was around 40 degrees or something but that was a couple of months ago and the curve would have already increased.

Our main concern was the aftercare!

Scoliosis Operation: Preparation

Several blood samples needed to be taken to test his haemoglobin level, oxygen level, setting up of plug for drip, etc, etc.

Protocols are unfortunately inconsistent. Some of the medical professionals are not using the gloves when handling blood. Thought this would have been a more mandatory element.

More blood tests taken - quite poor thing for someone so young to go through so much! Strangely enough the doctor was unable to locate a suitable vein to insert the plug! One of the nurses then helped the doctor and was able to get the plug set up. The nurse also helped with getting the blood to test the oxygen level!

Scoliosis Operation - Pre Op Discussion

Mikaail's surgeon contacted me on Monday, 9 May to ask if I would be comfortable if he is away the weekend after the operation.  I was a little surprised that he asked about it.  Anyway, I asked him instead is there anything I should be concerned and also if there is any other doctors who would be monitoring my son's condition in his absence.

Sure, his team will be attending to my son during the period he is away and that he will also be contactable, if need be.

Can I stop the surgeon from being away?  Definitely not.  Can I reschedule the operation?  Possible though not likely as we've waited for almost 6 months!  We decided to proceed with the operation.

Went to the hospital on Tuesday, 10 May for Mikaail to be admitted.  Met with his surgeon as well as he wanted to have a quick look at Mikaail before surgery on Wednesday.  Everything is good to go!

It's Now Confirmed

After meeting with Mikaail's doctor who is also the surgeon in school on 31 March and two follow up calls, his scoliosis operation is now confirmed!  It's scheduled for Wednesday, 11 May.  In a way, we have also sort of prepared him for his operation.  We explained to him that this operation would help him to breathe better and also help him to sit up better.

When I met the doctor, I expressed my concern over the surgery and whether this would be the best option.  We also talked about the pros and cons.  Anyhow, it doesnt really looked like there are any better alternative apart from the operation.  Without the operation, the curve would get worst over time which will make it difficult for his breathing and sitting posture as he will be slanted further.

When one of the nurses called to fix the appointment, she said Mikaail would need to stay in the ICU for about 2 days before being transferred to the general ward, possibly a week.  However, his neurologist said he would probably be staying for about 2 weeks stay in the hospital, in total.  He also said this is a major operation and I told him that yes, we are aware since it takes about 4 hours.  He said it is not so much the duration.  He mentioned that there will be loss of blood and blood transfusion may also be required.

On hindsight, I should have asked him to elaborate on what he meant by "major operation".  I did tell him that I had spoken with his surgeon on whether we should proceed with the operation.  The primary factor that we decided to get the opeation done was the breathing issue.  As he gets older, it will become much more difficult for him.

Minced Chicken & Broccoli Congee

Marie cooked Minced Chicken & Broccoli Congee this morning for Mikaail and he gave her 5 Thumbs Up!

Usually he would only eat the congee at one meal.  After his lunch today, he said he wants to eat it again for dinner and to include chicken sausage.

Since Mikaail has difficulty eating solids, I told Marie to chopped some broccoli, carrot and potato then minced the chicken meat to put into his congee.  Also, boiled some dried scallops first then added about 1/2 cup of rice into the pot to cook the congee.

Full details of the ingredients are available on QuickneasyHomeCooking.blogspot.com.

nEX Shopping Mall

Went shopping at nex Shopping Mall and spent our whole day there yesterday. Wow! It's really huge and I am impressed that it generally wheelchair friendly mall. There are at least 2 wheelchair toilets on each floor. The lifts are also big enough to accommodate at least 2 wheelchairs plus perhaps another 3 - 4 adults in the lift.

There is a good variety of restaurants, fast food outlets and other retailers. Oh, there is also Kim Eng Securities in the building.  Didnt expect to see a business of this nature in a shopping mall!  I suppose there are more people getting into investing so it does make sense to make it easy for retail investors to get to the brokers.

Only one floor is not quite easily accessible to wheelchair users and that's the floor leading to the fast food outlets from where Kim Eng Securities is.  Anyway, depending on which lift you took, wheelchair users would need to get into the wheelchair lift from the 4th floor to 3rd floor.  In order to use this wheelchair lift, you would contact the building security at 6416 6377 for their security to personally come to the wheelchair lift to activate it.  I was there during the offpeak period so the guy was quite fast about 5 minutes after I called him. Thought it might have been much better if there is some kind of intercom button instead. The guy told me that they had parents with strollers, prams and customers with shopping bags calling them to activate the wheelchair lifts. Not at all surprised, really as there are several inconsiderate shoppers no doubt.

The most annoying issue I have is the able bodied users who uses the toilets meant for the wheelchair users!! Without fail, I always encounter wheelchair toilets used by an able bodied adult regardless of man or woman.  I fail to understand why must these able bodied users insist on using the wheelchair toilets especially when the regular toilets are just next to the wheelchair toilets?

 

Wheelchair Access

Brought Mikaail to NTUC Supermarket at Civic Centre last Friday to buy the ingredients for the Chinese Style Carrot Cake.  Originally intended to cook it on Saturday for my family gathering but decided not to as there were too many dishes already planned for the day.

Anyway, I also planned to bring Mikaail for a walk at Causeway Point.  It's a short walk from Civic Centre to Causeway Point.  However, to get up to street level to cross to Causeway Point  from Civic Centre on wheelchair you would need to go around 3 long ramps. 

Rather disappointed that after renovations, instead of shortening the ramps, it remained except that there are more steps and inevitably there are couples sitting along the plant beds!  There is already stairs on the left of this picture.

My opinion is that when the architects or building management renovate their premises, they need to consider the needs of the wheelchair users especially when the greying population is on the rise.

Happily waiting for Yaya

This is a picture of Mikaail waiting for his aunt Yaya who went for a short holiday to Tanjong Pinang and Batam last Friday.

And this is the picture when he hears Yaya opens the door.

And the stuff Yaya bought while on holiday!

Swensen's Ice Cream Cake

Mikaail turned 12 last December and we held a small birthday party for him and got him a Swensen's ice cream cake with a picture of a car.  The closest we could get him was a red car though he wanted a blue car. Though he cant see the difference in the colours, we explained to him that there was only red car in the ice cream cake catalogue.

This was the 2nd time we bought an ice cream cake from Swensens and had it delivered.  The difference this time was we did not store the cake in the freezer as we were told that the cake will last 6 hours without refrigeration.  They should have said to lightly heat up the cake!  It was really tough to cut the cake - like using a knife to cut ice.

Family official cake cutter - Jaye - having ago at cutting the ice cream cake with a cake knife then a chopper!   Then my brother in law, Andy, had a go at cutting the cake as well.

The cake was really yummy and though everyone had a generous piece, we still had leftovers!  If ever I order a cake from Swensen's, I will have to remember to ask them how to actually cut the cake as it really is almost impossible to cut the ice cream cake nicely.