Friday, December 5, 2014

Big Day Out - Mariner Of The Sea

We have been wishing to be able to bring Kaelyn out of the Singapore borders. But we have not done so out of fear of medical or equipment issues cropping up when we are more than 1 hour drive away from medical help. In addition, her equipments and requirement to have oxygen tanks on standby with her probably makes customs clearance difficult.

In November, we were given the opportunity to do so by Club Rainbow as they were organising a 4 day 3 night cruise, together with Rare Diease Society Singapore (RDSS) for both their members, on board Royal Caribbean’s Mariner of the Sea.

It is really a big day out for Kaelyn as it was her first ever trip out of Singapore, and also her logistics require ‘big’ effort.

These are the bags for 3 adults and 1 Kid, with no winter clothing and excluding the equipment on her buggy.

We were kiasu (scared to lose) and kiasee (scared to die). We bought backups for her critical machines. These made up half of our baggages. 

Tagging along with Club Rainbow and RDSS probably made clearing the customs easier as we were going through as a contingent. The customs were probably expecting what we have on hand. 

Also Club Rainbow have a medical team on stand by all the time during the cruise. We know we have some support if there are issues. 

I am glad that we were able to make this trip. Kaelyn pretty much enjoyed the time on the ship even though activities for her were  limited. 

She loved the christmas tree on display. She tries to sing some christmas songs whenever she goes past the tree.

She also shook hands and posed for pictures with puss in boots.

Not a very keen fan of the outdoors 

This trip also brought families with kids having rare life threatening conditions together. This is Danielle, who is about 4 years older than Kaelyn. Same as Kaelyn she has SMA. They were just sort of hanging out and watching the cartoons together. K wanted to touch and stroke Dan's hair. and Dan didn't seem to mind K at all. 

Just kids enjoying the company of other kids. 

How did we know that she didn’t want to leave the ship and holiday behind? This is her face when we disembarked to go home and told her holiday's over.

Thursday, December 4, 2014

Equipments starting to break down.

K has been using her medical equipments since November 2012. Her inventory of medical equipments are

  1. Breas Vivo40 BiPap
  2. Covidien Desktop Oximeter
  3. Desktop suction machine
  4. Kangaroo epump
  5. Portable Oximeter
  6. Portable suction machine
  7. Ormesa Buggy

Most of her equipments are mechanical and/or driven or supported by batteries. Given time, both mechanical and electrical systems will deteriorate.
Her BiPap gave way 1 fine afternoon. We have since got hold of a replacement.

Her desktop oximenter and milk feed pump’s batteries are wonky. Thankful for the portable oximeter that was kindly handed down to us. It allow us to monitor K easily when we are out. So the batteries for the desktop monitor don’t matter much for now.

We've change out the battery and the leaky cannister for the portable suction machine before we went on the cruise.

Recently it is the milk feed pump that really frustrates everyone at home. It will spin for 7 or 8 times before giving out the feed error. Repeat this infintely.

We managed to get hold of and older milk pump and compatible milk bags, and then send our own milk pump in for servicing. Now to wait for the cost of servicing.

Kind of frustrating to have different problems coming in one by one, week by week. However I am grateful none of those happen during the cruise trip.

Another problem we are facing is that K is slowly growing in age and size. She is going to outgrow her buggy, mattress, beds. I would say this is a good problem to have:)

Thursday, November 27, 2014

365 days hospital stay free. 0 days free

K has been doing well in the period leading into and after the cruise, until last midnight.

K vomited around twice.

No fever. No cough or cold. She just threw up after her end of a feed and shortly after her medicine and flush for the evening.

It was almost time for bed time for all when my helper shouted for us. She noticed liquid starting to spew out from her mouth. Seconds later, her spo2 started to descend.

We stabilized her spo2 with suctioning and a blast of O2. Her heart rate went up and stayed there.

Shortly after she threw up again. Again, we stabilized her.

Given the recurrence in such short while, we were worried about aspiration into her lungs. We decided to bring her into KKH, have a look at her x-rays and a check while she is doing ok, instead of having to rush out there should she deteriorate.

Although K's been in and out of the hospital a few times. She just gets agitated when she  sees the people in nurse or doctor gown approach or touch her.

She got so agitated her spo2 dropped enough for the medical staff to bag her.

She is stable, but at a higher resting heart rate and Bipap settings.

Hopefully she will settle soon back to her baseline, or close enough to get her out of her ASAP.

She just has to make a stay in hospital an anniversary thing.

We have been admitted last year on the same date, and probably the year before last.

Tuesday, November 18, 2014

Gold class seats

After being down for a few weeks, K has been recuperating and is getting physically stronger.

Since she has some of her strength back, we started to put her up in her seat to 45-60deg and her head looking straight ahead. 

Her usual head position is to the side to allow her saliva/secretion to easily flow out. If her head is straight, she has to put in more effort to clear her secretion.

We have her up looking out of the window and ask her to wave hi to the neighbors in the opposite block. We have her sit up to watch her shows on her tablet.

And she really enjoys it even though she has to put in more effort to stay in that position.

She refuses to come down when we get her to come down. 

I call this her Gold Class movie seat. It's reclinable and has a leg rest that looks pretty comfortable for one to enjoy her movie.

This is Gold Class version 2, with a nicer tablet holder. We would also put her arms on slings to let her move her arms on her own. (This angle doesn't look like she is too comfortable. She is ok)

Yes I think she probably needs better arm slings.

This lounger, together with her mattress is very useful. The comfi mattress provides a ventilated and comfortable padding on the lounger. The ikea lounger is really easy for us to put her back down flat promptly in the event she handle her sitting position or needs other attention.

The physio sitters provide really good support for her. Only problem the loaner we have fits her really snugly. Getting her out requires more effort (or we could try the next size?) to dig under her bottoms to lift her out, and at the same time ensure her tubes don't catch on any corners or hooks

Clumsy dad is catchy (Geddit? No? Never mind:( )

Only problem is that she is growing up. The mattress is running out of "runway" for her length and her arm span has exceeded the width of the mattress. Need to think of a solution for our use case at home before clumsy dad accidentally knocks her off the lounger *gasp*

Wednesday, October 15, 2014

BiPap Down

Just as K was settling into her routine after some downtime, our BiPap decided to stop working last week.

After the mask was removed from K for bath, it stopped working after she came back to the BiPap. It couldn't pump to the required pressure.

Rushed back home from work to have a look. No restarts could make it work again.

Called up the supplier to come have a look and bring a temporary replacement unit.

Thankfully K has a good day with her secretions. She was able to manage and hold out without her BiPap until the supplier came.

We have our ambu bag on the standby of course, but didn't have to use it this round. look at the repair cost :(

Just a minor rough patch hopefully

What's going on lately? K has recuperated enough to sit up and play.

We still give her once a day flumecil and nebulizer. But we can probably cut that off soon.

She had a home care visit recently too. She has healthy gain in weight and height.

We updated the docs and nurse of the bad episode that happened at home. Doctor decided the episode is probably enough to warrant an X-ray of her lungs. It also has been almost a year since she undergone an X-ray.

After discussion with the gastro team, we also had her feeding hours by another 2 hours, and then another 2 hours in future when she is used to the increase of feeding per hour.

But just when we thought we rode over the hump, she has a fever just over the Sunday.

Monday she also has some rash coming out.

Suspicions were cast on chicken pox, even though she has had her vaccines and has not been in contact with anyone in remote contact with chicken pox.

Vaccinated kids still has a chance of developing chicken pox, though it may not be full blown.

So far the rash has not been spreading. This has got the doctors and nurses puzzled though as the rash came with some scratched stripes on her skin. So we are monitoring this at the moment.

*Fingers crossed* Hope this is just a minor rough patch.

Thursday, September 11, 2014

Getting out of the woods

It has been 2 to 3 weeks since the last terrifying episode, K has been doing ok. No scares.

We have her on the nebuliser with saline, together with Flumecil, to loosen her mucus or secretion.

I am glad to say she is doing much better now. We managed to stay out of the hospital throughout these period of time, which is kind of an achievement. But of course, we needed an oxygen concentrator to tide us through at home.

One thing we noticed is that she dislike even more turning her head to her left. It seems like she has a bit of phobia of not being able to manage her secretion.

Starpals doctors and nurses are still concerned with her right upper lobe as her air entry sounds unequal. Even when she is well, her air entry sounds unequal.

But it has been like this since about 2 years ago. Chest physios even when she is well doesn't seem to make it better.

Wednesday, August 27, 2014


Just as we thought K is getting well after this episode, we probably lost K for a while yesterday.

She was taking a bath when she couldn't manage her secretion. Sensing problem, my helper accounted that she brought K to her bed to clear her secretions.

Suction was done but very promptly, she became unresponsive, eyes closed.

She had to be resuscitated. We are very thankful for my helper's response. K came around.

When I reached home, I was anxious but glad to hear her cries.

We got Starpals to come have a look to make sure that the lungs are not compromised.

Hours after that episode, she can play with the nurse and doctor who came.

Although well now, she still has got thicker than usual mucus and secretion We think K got choked by a mucus plug that led to this episode.

Mucus plug is the bane of these kids with low lung function as they do not have the strength to swallow or blow out strong enough to expel the secretions.

Thank God Kaelyn is well and good as of now

Monday, August 25, 2014

Low grade fever

Kaelyn suddenly had an onset of fever, thick mucus and secretion in the nose and mouth/throat for the last week.

Thick mucus and secretion is the enemy of patients with low lung function. Suspected culprit was probably a viral infection.

We went though an oxygen tank in half a day. We still have another spare. We are trying our best to not go hospital. 

Thankfully we were able to loan an oxygen concentrator from Starpals to get us through. Only her upper respiratory tract is affected. So long we manage her secretion and mucus well, it should be ok.

Looks like an oxygen concentrator is next on the list.

Saturday, August 2, 2014

Playtime with a new toy drum

With K, playtime is different from other kids. If we want her to engage in some play, we had to assist her. For example, play cooking while she is lying down will require us to hold her hands to move through the motions of say stir frying a toy chicken or some sorts.

Whenever possible, we always try to K to engage playtime with her own strength.

Since we loaned the tumble forms sitter, we usually just have her sitting up, watching the TV or maybe tasting some of the puree we feed her.

Last weekend, grandma bought her a toy drum set after her cousin destroyed hers. We decided to work the sitter with the sling frame while letting play her new drums.

The frames sits over her in the sitter, with the slings supporting her upper limbs from the frame. She gets to swing her arms on her own to bang the drums.

Her grip is weak as she drops her drum stick after swinging it a few times. Had to leverage on the sling to support it.

While sitting up, this little miss busybody also gets to look at our neighbours next block (Full length windows are great!) Her eyes are ever so busy.

She sits up at 45-60 degree angle for about 40 minutes, dropping the angle once to let her clear her secretion when she didn't manage it too well.

When the park downstairs is ready, she can sit up, peer down to look at the activities going on down there if she isn't already there.

Thursday, July 24, 2014

Food for thought and laughter

At the playground, K's playground friend was saying bye bye and that she has to go home and eat her porridge.

My helper turned to K and asked if she too is going home for porridge. K gave a HAHA.

My helper then asked K again if she is having milk for dinner and K replied yes.

Biting and holding up her nibble spoon

I feel glad that she seems like she understood that given her condition, she can't take her food orally.

We give her nibbles of her puree and cut fruits now and then for flavour. But only harder fruits for nibbles (like apple).

She has teeth and and I worry slightly about her chomping off soft fruits like banana :P

She also likes to do her HAHA laughs whenever she thinks something silly is happening around her. When I go "I forgot something", sometimes I will hear this soft HAHA going on behind me.

Her timing is good, i must say. I imagine she could be a comedian when she grows up and can tell jokes.

Sunday, July 20, 2014

What was I thinking about tube feeding

I was sitting down beside K while she was taking her afternoon nap. My helper made her papaya juice.

I fed her slowly using a syringe through her medicine port on her AMT continuous feeding tube. One syringe after another slowly. 6ml by 6ml. The beautiful orange papaya juice flowed slowly as I pushed on the syringe.

After a short while, i started running her milk pump for her normal milk feed.

I sat there smiling. I can hydrate and nourish her even while she is sleeping. The marvels of tube feeding.

Not sure if my thinking is weird. But for K, that's her norm(tube feeding).

Monday, July 14, 2014

Sitting up high at PT

Before we went into the physio session over the weekend, we had a talk with K before we went in. She was always kind of upset at PT and home care sessions.

We told her that we are going to see the PT now. What will you do when you see the therapist? K laughed out loud.

GOOD! We like a brave girl!

Unfortunately her brave facade gave way the moment we wheeled her into the gym. Only after viewing a number of her favourite videos then she stopped fussing.

We tried sitting her up on the tumble forms chair during the session. Usually we don't put her so high up as she may not be able to handle her secretions well enough. But she did managed her secretions while sitting up during the session there. She seem to enjoyed it too.

Sitting her up has the advantages where the lungs will be under lesser pressure as compared to lying down, allowing better gas exchange.

She also has a good view sitting up. Being a really curious (or busybody) girl, she loves this point of view.

We took the offer to loan the chair home. Together with an arm sling, she might have some way of having her own play time with some light weight toys. Let's see if we can work some activities with her on the chair.

Tuesday, June 24, 2014

Breezy Sunday picnic

Sunny Sunday afternoon are always good times for picnic. We went down to our usually picnic haunt, East Coast Park.

We sure are happy when we see K just taking in the view, enjoying the breeze, looking at the kids play and asking to go after the doggies.

One day after the BiPap malfunction, it worked absolutely fine. It'd better work until the end of times for the price we paid.

Homecare Tea party 2014

We went for the KKH Homecare the party on Saturday. There were energetic Zumba performances, hand painting and cosplay characters. But we didn't really enjoy the party.

K had a few episode of desat there. Not sure why, but either she she couldn't cope with her secretion at that moment or she got a shock when she saw the masked cosplayers. But we sure made use of and thankful for the ample oxygen tanks around.

After resolving K desat issue, then our vivo BiPap decided to just off itself. We were on 12V external power and have used this setup countless of times. Thankfully after we connected the main AC power, the BiPap got up and working fine, including with the 12v battery, until we were home.

Only took this picture after we reached home. She went to party and got a "tattoo" and rainbow looms. 

Tuesday, May 20, 2014

PEG button change

Last Friday, K had her replacement of her PEG button in the Children Surgical Centre. The entire thing was over in about a minute.

I feel for K. They really yanked it out and popped in the new button.

I guess it was the way to go. But it done was really fast and clean. I guess it would have hurt for a longer time if you took the time to slowly twist and pull it out.

The area of the button was raw for few days, but expected.

This is the Bard after it was taken out. It's kind of our souvenir.

It was last October when we first had the button done for K. We had the Bard button put in for K at that time.

It was leaky after about 4 months. There was back flow, even 3-4 hours after last feeding. Since recommended time for change is about 6 months, we made an appointment to change the Bard out.

This time, we opted for the AMT Mini ONE Non Balloon.

The only thing about this AMT button is that it is slightly bulkier than the Bard. The Bard has a lower profile compared to the AMT when compared with both the continuous feeding tube inserted.

If you don't like the button/feeding tube combination to look like a small erm...button underneath the shirt, Bard would probably be the way to go.

Let's see how this model of AMT button goes.

Friday, May 2, 2014

Star pals engaged

Recently we engaged the services of star pals. They have a team of doctors, nurses and social workers who can carry out regular home visits of the patients to check on the well being, provide medical treatment or therapy services.

With their services we hope to stay out of the hospital as much as possible. Hospital stays drains the energy out of everyone.

So far they have done an initial and a follow up visits.  To get to know K and her condition, they ask lots of questions about K.

These questions are fine actually. But there are some questions that got me thinking like how's the rate of breathing without the BiPap compared to with it.

It struck me as I realized I haven't been noticing these details about K for quite sometime. Sad to say,we sort of pride ourself on having a mundane life. Because most likely any changes happening to K's health are areas for concern. As I always say to my friends who ask about K, no news is sometimes good news.

Having someone to come in and ask some questions occasionally is good. It serves as a reminder to be more attentive to details even in a lull or in good health.

Friday, April 25, 2014

Family portrait finally done

We have been wanting to get a family portrait done but have been hesitating. Mostly because we are unsure of the condition we are going to shoot and whether the photographer would be understanding of our K's need.

After the rare disease day 2014, RDSS helped arranged family portrait sessions for her members with Mr. Lawrence Loh of Lawrence Photography 

What we expected was a single photographer who would come in by himself. We are in fact very fine and was expecting only a photographer turning up. We were very appreciative of the photographer's effort to come volunteer and to fulfill one of the things we had wished to do with K.

But no, he had an assistant, make up artist and bodyguard (kidding. That's the boyfriend of the makeup artist). They lugged photography equipments and quite a hefty makeup kit. He had to set up his light boxes, light check, make up for us, just like those photography studio.

Mummy and daddy got their photos taken too. It was kind of awkward. It seems like we haven't really took a photo together for a long time. Made me laugh as I think back about it. 

This one, we are told to form a heart shape. Sorry our imagination is abit limited. 

It was really beyond my expectations to have a whole team of people sacrificing their time on a weekend to bring a smile to a special kid.

And indeed on that day, they made K feel special. And yes, K gave her smiles...lots of it, to them.

Thank you Mr. Lawrence Loh, Charis, Ling ling and Camus for their time and effort to come to ulu punggol and their fine work.

Sunday, April 13, 2014

Books and crafts week

This week we started going through story books with K. We haven't read much books With her. The ipad is always an easier choice. Even at night, we also let her be sometimes and watch or play her ipad. 

During midweek, we started going through her books in the evening to avoid over stimulating her with the TV or ipad. It wasn't enough as her limited books are short, touch and feel stories and not all books pike her interest. We went through it within 2 nights.

Fortunately our National library has a very good source of books for the kids. Me and wife went out to borrow these books. It should be able sustain her ever changing interest for a week or 2.

While I was out for the arvo running some errand. Mum and K collaborated on this Easter bunny basket. The handle's not in yet at the point of photo taken. 

She loves to help out in any way she can, be it holding bits of paper or coloring. We let her help if possible. 

Her mind is only limited by her body. We will just have to work harder and improve our imagination to bring the world to her.

Thursday, April 10, 2014

Simple Sundays

Was just looking back at last Sunday. We made a trip to the mall with K. It is not always that we bring her out to the mall but we did that. It's just a simply a trip to the mall to do few things like meeting with dad and mum's friend for lunch, doing groceries.

These simple things in life makes K's usually monotonous week seem more special. She usually is confined at home in bed. So to be able to visit the pet store in the mall or window shopping around the kiddy shops makes the week slightly different in a good way.

Having lunch with daddy and mummy's friends.

Shopping for groceries 

Walking around looking at bunnys and hamsters in the pet shop

Exploring the kids' rides. Although it is pretty difficult to get her to ride now, she enjoys looking at kids playing. But she did have 1 kids ride in one of her hospital stay though, before her medical equipments weighed her down.

Saturday, March 29, 2014

Home care 20140328

It was home care Friday again. As usual this big baby was crying, with genuine big pearly tears, when she realize that this clinic is for her when we pushed her into the familiar waiting area.

Weight is at 11kg+++ while her height is at 88cm. According to the charts, physical growth is within healthy range.

The 1st person to work with K is important. They have the ability to make it into a cheerful session or a fussy session.

We had the speech therapist first up. There was promise of food into her mouth. Yummy. The offer of food was good enough for her to open up and welcome the therapist with smiles. We spent more time with the speech therapist as we worked together to see if there are ways to help her with speech.

For that, we put her in the tumble form feeder chair. It was at a pretty high inclination for K. It got me worried abit as K spends most of her time lying down flat or not almost flat. But hey we are in the hospital already right?

We were glad that she was able to handle it. Her spo2 maintained at a very good level and managed her secretions well ( she spits it out instead of swallowing). Maybe the motivation of food is strong enough to make her work hard.

With the food, we make her work her tongue to stretch and taste the food dipped on the chewie stick. We learnt some massage to help her with some passive movements around her lips area.

What we conclude at end of session was that she still had some limited movement in her tongue and lips, but we have to get her to put 2 and 2 together, There are definitely lots of work to be done in this area.

We are also at a time where the nurses and doctors feel that we can change K's button. We are using the Bard. Her valve is probably stuck and back flow happens when we unplug her feeding tube. Will be considering the MicKey or the AMT, preferably one that can allow feeding of purée as well.

This is K having her fun time after her rounds with the doctors and nurses, looking at the one of the kids ride KKH. 

Thursday, March 27, 2014

K's lullaby

Enjoy these classic oldies. First up, George Benson's Nothing gonna change my love for you.

And next up, Eric Clapton's Wonderful tonight

K's been going to sleep listening to these songs on loop. Apparently twinkle twinkle little stars no longer does it for her to slip into sleep. She needs the soulful voices and melodic guitars to put her to sleep.

Must say she has got some taste there. I approve.

Monday, March 17, 2014

Clinic Visit

K made a visit to the paediatrician on Saturday. Normally we wouldn't go to the clinic as since her vaccinations are done. K's condition would usually present us with a choice of either stay home or go hospital. But it wasn't anything serious.....I think.

For the last week, she had a lump on her bum. It looked like and we suspected it to be haemorrhoid to us. She was having difficulties passing motion until last Thursday, where she was really uncomfortable the whole day. My helper used suppositories on her. It did made her pass motion. But the lump was still there. So Saturday, we went to the clinic to have a look and maybe get some cream for her.

We went to the Kid's Clinic at Seng Kang, the usual paediatrician. Mummy just makes a phone call to get a convenient time slot for the clinic the day before, and we just show up at that time. The staff there know K and her condition, and have always  accommodate us by putting us to the doctor as soon as it is convenient to do so. It cuts our waiting time, which is good. I am more concerned about exposure to viruses or bacteria than the waiting time itself.

After the check by Dr L, it wasn't hemorrhoid but a small skin tear. Probably due to us cleaning her up more than usual . So all we got to do was to apply the antiseptic cream for K. That's it.

K always has difficulty passing motion. She is already on the Nan 3 HA, which supposedly makes passing motion easier. But maybe due to the lack of muscles, she might not be able to exert the pressure needed to pass motion. We haven't been too adventurous with her diet since her PEG procedure as we are afraid of clogging up her g-tube.

Wednesday, March 12, 2014


Just had a PT session just the last weekend. As usual, suspicious looks were given when we got into the clinic, thinking is this for me or just visiting?

And then fussing away as soon as she got onto the therapy mattress. Too late, little girl...

This session was on moving her joints properly and positioning of K. Ankles are a bit stiffer than last visit. So more time has to be spent in her AFO.

And also on how to work the simple sling for her legs. A thicker bolster would be better to support her thighs while her feet is suspended or sleeping. This would extend her hips slightly with the thicker bolster.

We always suspend her feet only. There wasn't enough support for her as she had grown taller :)

With the thighs supported this way, she actually got more movement in her feet. Of course, more movement in our case is any slight movement. It's something and we are happy about these little things. 

We could also encourage her by getting her to kick stuff while suspended on her sling. 

Floating K

It's been ages since K got into the water. The only time I blogged about it was K in this tub. This was before her nasal tube feeding, and the collection of machines that came along later.

After that, she probably had had a dip or 2 in a smaller, shallower tub. One where we could hold her easily around her neck.

Why no neck float? I think her therapist mentioned about the body getting heavier, so not so good to just use the conventional neck float for toddlers. And also it would be easier for us to position or reposition her head and neck so that we can better handle her secretions.

Anyway 2 weekends ago, we went back to my parent's place where they had a small pool. We brought K into the water!

She loved it. She was trying to move her arms and legs in the water. Clearly pleased to enjoy a different sensation when the jacuzzi bubbles started.

No swimsuit as she had outgrown the one she had.

We didn't have to hold her up too much. Only the head. Her legs actually floated. Anyway we got a small float so we had half her body on the float instead.

Spent a good 20 minutes in the pool without her mask. She refused to get out as we wanted to get her out after10 minutes (Spoil sport right?) But seeing she could still handle her secretion, we just let her be for another 10 minutes.

Will try it again as soon as the haze in Singapore clears up.

Saturday, March 1, 2014

No park time this week

With the constant burning smell in the air, we didn't let K down to the park in the evening as usual. Kind of bored for her, I guess. So my helper carried her around the house without the mask for a few evenings. It beats laying down the same spot for the whole day.

Visit to the kitchen to see what's up with the cooking today.

Walking around the hall, busybody-ing

She refused to get down after being carried. My helper had to carry for a while. I came home and took over from her.

She just loves it. But we got to train our arms for her :p she is not the baby we carry about with 1 arm already.

Friday, February 21, 2014

Biting again

Recently K has the habit of putting some things into her mouth again. Why again? Well because as a baby, she already went though the phase of putting her fist, toys, whatever she can get on her hands, into her mouth.

Now she is doing it again, but not fervently, so we are ok with it. 

Through these actions she is doing, at least she is trying to move her arm and put the objects near her mouth or knocking it against her nasal mask. part of the mask is made of hard plastic, so it produces a knocking sound when knocked against her toy.

Tuesday, February 18, 2014

K's 2nd Birthday-Grateful and thankful

Yesterday we celebrated K's 2nd birthday with a buffet lunch with some friends and relatives. What a U-turn for me. But it's no biggie, just max 40 people.

When Kaelyn was born, I told myself this little girl's birthday celebrations is going to be very simple home affairs. No big celebrations when she doesn't understand a thing going on around I say.

I did it to celebrate a milestone. It is a milestone for K, that is, just to reach the age of 2.

It is not easy for her to reach this age. The prognosis of SMA is not good for her age as 80% pass away before age of 2. 

Thursday, February 6, 2014

Portable oximeter

We received a portable oximeter from a friend. We are thankful of the gift. What is even better is that it is same brand as the one we are using at home.

We do not need to source for different sensors. We save cost as we do not need to keep spare of another brand of sensor. it is conveninient as we just need to unplug the sensor and put it into the other oximeter. No unwrapping and wrapping of the tapes over the sensor

When bring Kaelyn out, we can travel lighter. Less worry about breaking her main oximeter when we move her equipment around.

We are thankful for this.