Friday, February 27, 2015

3 not so easy years

We celebrated Kaelyn’s 3rd birthday over 2 weekends.

First one was with a volunteer and her friends, where Kaelyn got serenaded with singing from the visitors.


The 2nd was with immediate family members where Kaelyn was a princess for the day.

Kaelyn 3rd Birthday 20150215182922

Every year is worth a celebration considering 2 years is the average lifespan for SMA Type 1 kids.

I think for them to wake up and breath everyday is a miracle for them.

The simplest task of swallowing water could choke them.

The suit of Darth Vader probably don’t help much.
Darth Vader Suit
There are ups and downs. The bad days life threatening, while the the ups are simply having fun days that puts a smile on K’s face (and without any choking or mucus pluggin episodes) and we treasure that.

The highlight of last year was of course the trip on the cruise. Kaelyn absolutely loved it. It sure took quite an effort on the logistics part.

We were also faced with literal life or death decisions yet again in the wards of the ICU, where we contemplated hard about Kaelyn’s life, death, quality of care and comfort.

We are thankful that we didn’t have to go through with our worst case scenario decisions.

Every checking out from a critical stay in the hospital feels like a student just scrapping pass the exams. Just barely made it.

We made it through another year. But we have to be realistic. But as much as we want to, for now, we cannot beat SMA.
In fact at any time, if a mucus plugs her airways or she aspirates her feeds, her life will be in danger if we are unable to clear it in time for her to breathe.

But for now, we celebrate the days. We try to lead an inclusive life with Kaelyn with the support of friends and family (even strangers for that matter) and face the challenges of a special kid.

Happy 3rd Birthday Baby (Although you are now grown up and don’t want us to call you baby now)
Kaelyn 3rd Birthday 20150215182826

Monday, February 9, 2015

A helping hand

I was doing some cleaning of the bookshelves when I came across the book Fred and Reb passed to us.

a helping hand
It reminded me of the time when we just discovered that Kaelyn’s journey is going to be different.
I supposed you could say it was dark days.

What to do? We didn’t know the when, whats, hows and why.

We could only turn to the Internet. We found articles writing about SMA being the number 1 genetic baby killer, does not live pass 2 years, no cure. It was depressing.

We found the Muscular Dystrophy Association Singapore (MDAS). Sent an email in asking for any help but was expecting my mail to be lost in the imaginary heap of mails that is the enquiries mailbox.

But we did get a reply and they linked us up with parents who were willing to share their experience with us.

Fredrick and Rebekah was one of them. They let us visit them and they shared their experiences of their own. Their younger daughter, Danielle, also has Spinal Muscular Atrophy (SMA).

It sure helps with a helping hand, especially one who have walked through the road we have to take.

Thursday, February 5, 2015

Just some bad days

Sitting down, and starting to type out this entry after a bumpy evening. My helper is putting Kaelyn to sleep earlier than usual.

Kaelyn heart rate was tachy and wasn’t holding her spO2 too well this evening.

We didn’t finish her sets of cough assist. We gave her a break after checking that she sounds clear enough.

She just wasn’t holding it too well today.

Seems like she’s like this when she doesn’t get enough rest.

Last Saturday was more stressful.

Same thing. Tachycardia and spO2 didnt hold up well. She even seem to aspirate her feed.

Aspiration of her feed is bad as it could go into her lungs and lungs could collapsed.

SpO2 dropped well into the 50s% (healthy is 95% and above)

We standby to bag her on Saturday. But we didn’t have to. Good not to stress her body further.

After her own record ICU stay, she’s really more fragile.

Her fingers weaker.

Ankles stiffer.

Her smile is fading.

Her voice lacking her usual strength.

The combination of the progression of her disease, splints preventing her hand movement, IV lines preventing her wearing of her AFOs just takes the poll on her.

I go to bed thinking when she recuperates enough, maybe she can wave her hands, give me a bigger smile and shout so loud from the hall, I can hear from the corridors when I come back from work.

Just a weak maybe.

She’s in good spirits most times, but it just takes lesser to set her off now.

if she starts to not have quality naps and night sleep, She is literally alarming. Her heart rate goes up to 180–190 like a sports car going into the highway and her spO2 goes below the healthy level and stays there long enough for you to worry.

It’s like screw it, I am tired breathing normally. Take 5. Breath harder in awhile. Let them go fix me a dose of O2 therapy for me. Chop chop.

We scramble around, put her into her favorite position, suctioning what we could suction, supplement whatever appropriate dose of O2 she needs.

Amidst the frantic action going on, We tell her It’s ok baby. Rest and relax, but just remember to breath in breath out.

As K’s previous therapist told us, We are going to have just some bad day now and then (somewhere along that line)

Just some bad days.