An Eventful Year

Here we are at the end of 2010...it was so packed with ups and downs I'm actually heaving a sigh of relief that it's nearly over.

There was the exhilaration of Daen's birth, coupled with the strain of numerous hospitalisations for Vera, and the initial tough months of caring for a newborn.

We've arrived in a better place than at the start of the year I believe:

Daen's out of infancy and now a bubbly active baby, Vera's breathing is better, we now know how to manage secretions at home, and I'm able to enjoy more time out, thanks to great help from Ian and our immediate family members.

And Vera recovering just in time for Christmas get-togethers was a real bonus.

The fact that she is HERE today with us, is reason enough to celebrate, any day of the year!

Vera doing her stand/dance

Vera seems to recognize an old friend who used to visit us with her kids
before Vera turns one

Daen with his godma!

Costly Medical $upplies

I read a post by a mom of a special needs child

Medical Suppliers Profitting Off Terminally Ill Chidren - The Rotten Vermon Stench Of The Medical Supply Business

...and I share her sentiments.

While in Singapore (thank goodness) we have a government that provides subsidised medical care for Vera at affordable rates, medical supplies are not covered under insurance (no company will insure Vera anyway), and parents have to get them direct from suppliers.

While I understand that a bipap machine can be costly at $6000, it is the pricey consumables that get my eyeballs rolling.

Take this for example.

Bacteria filters - 1 for $5

This device filters the air before it blows into Vera's nostrils. Due to air pollution from construction and the highway nearby, we have to change it every 3 days. That's $50 a month.

I don't believe this piece of plastic and paper can cost $5. There is no bulk purchase price.

Melatonin Didn't Work

Okay, it was a long shot.

Desperate for a 'cure' for Vera's erratic sleep pattern, we decided to give Melatonin a try. Our respi doc had said he didn't think it would work.

I had response from many moms of T18 kids that responded well to it. Most said their child settled more easily and slept through the night.

We tried a very low dose on her. It's 3mg for adults. We gave her 0.75mg.

It made her drowsy, but more cranky as well. She would cry and last feed was difficult. And she still woke up in the night.

After about a week we discontinued it.

And guess what, Vera started to sleep through the night.

SHE HAS SLEPT THROUGH THE NIGHT FOR 5 CONSECUTIVE DAYS NOW.

This is a breakthrough for us after months of her waking for hours in the night.

When we've done everything we could think of, we get a break.

The only thing is we've been suctioning her regularly before bedtime - could it be that it clears her airway for better sleep?

Who knows. I pray our good luck continues.

How Do You Do It?

To moms of Trisomy 18 or other special needs child and a younger baby: How do you do it?

I knew it would be tough: but this is pushing my limits.

When Vera is well, it's already a stretch. The bad news is while the adenoid and tonsil surgery has improved her breathing, it hasn't improved her sleeping. She's still awake 4 hours in the middle of the night. Which means someone (Beth) goes sleepless as well. For nights on end.

Now, she is sick.

She spent the whole of last night wailing. Beth has slept all of one hour and is hardly functioning.

We're bracing ourselves for another round of "wailing-suctioning" for the next few nights.

If it's just Vera, and 2 caregivers, it's manageable. One can take the night shift, and sleep in the day. The other the day shift.

With another jumping-scooting-prancing-weaning baby in tow, I find that I am not able to take over Vera in the day.

Anyway, whining aside, I'm thankful for a fully committed caregiver and a hands-on hubby. I am not alone.

The juggling continues.

No Time For Vera

I haven't been posting because there's little time for it nowadays.

With a tot that's just found his feet, wanting to get out and see the world and me navigating the whole business of weaning, I find myself having little time for Vera.

Their schedules don't match either, which doesn't help. I have to match Daen's sleep/wake routine to keep up with him.

Beth, Vera's caregiver matches her routine to keep up with night wakings.

Some days, I only spend an hour actively with Vera, even though I'm at home.

Vera used to get loads of therapy time when I was pregnant. Now, it's only when Daen is asleep and she is not tired, feeding or after a feed. So when the timings and moods allow, we're out the door with the stander in double quick time! Vera loves going out on the stander by the way.

Now, Vera spends more time by herself in her reflux bed, just listening to music. While Beth busies with the chores and I'm with Daen. One of the reasons she's grown fatty!

The other reasons:

1) Overdose of phlegm-dissolver Fluimucil (oh did you know it's unbelievably sweet?) We've cut back on it since.

2) Night feeds - we use them to settle her cos it works. We've cut back on this as well.

Hopefully, we get a trimmer Vera in a few months time. Now we can call her by her old nickname - Porky Vera : )