27 November 2008

Another Big Sister

An old school friend brought her daughter to visit Vera recently. I think her daughter can babysit Vera for us.

9th Month Update

Here's the low-down on Vera at 9 months:

1) Blood pressure: was moderately high, no change. According to her paediatrician, it's systemic and not pulmonary. Latest reading last week was 102/51 and 90/63.

2) Eyes: Right eye still lagging behind left eye in clearing of the haze, but both eyes move much faster now (almost immediately) in following objects and faces. Both eyes seem to move in unison.

3) Ears: Although Vera failed the hearing test at 8 months, we're pretty positive she has some hearing. She turns to sound, and responds to musical toys. So much for costly tests.

4) Breathing: Still a noisy breather when sleeping, but we've noticed some nights where she's pretty silent for a period of time. Definitely not the congestion during the initial period of switching to nasal feeding tube.

5) Teething: Definitely, although no signs of any teeth yet. She keeps gnawing at her fingers and hand, and can get pretty upset when she can't cos we're holding her by her armpits like a pair of crutches. Some drooling has begun.

6) Feeding: Therapy continues post VFSS. We're getting her used to spoon feeding. Water is well-received in tiny spoon sips, puree too, but not if the consistence is too thick. However, liquids still flow too fast down (it's like how we take a gulp) and choking occurs. She does not like more than 1 teaspoon of puree though (what a long way to go...)

7) Nasal Tube: Vera's face has been marred by rash caused by the sticky tape. It is aggravated in hot environments (triggered by our over-ambitious Big Walk) and by her constant face-scratching. We alternate the tube position from cheek to cheek to allow the opposite side to heal.

8) Raised chest: Vera's chest protrudes on the heart side i.e. her left. We think this is linked to the thickening of some of the muscles surrounding the heart. It is probable that she is using extra effort to breathe and this causes her heart to work much hard (hence developing muscles!) This is not a cause for concern now (but maybe in future it may).

9) Flab: Double chin and tummy have excess blubber hee.

10) Neck Control: Vera is still weak in this area. On her tummy, she can turn her head from side to side. However, she still cannot hold her head up, nor tuck her arms to her chest to push herself up. As she gets heavier, this will get harder.

11) Fingers: We've seen marked improvement in her fingers. No longer are her fingers clenched. After months of intensive daily massage and holding, they have relaxed so much you can almost hold them to a flat palm (almost). In fact, now we're having the opposite problem of getting her to grip things! But a few days ago, she did hold up a pencil for a few seconds so we'll continue gripping therapy. Her thumbs however, have developed a life of their own. They are her most responsive fingers. When she's held in the position shown below, (standing is her favourite thing), she'll proceed to 'play the guitar' with her thumb! Imagine strumming a guitar, up and down with just your thumb. Daddy says she even did it with both thumbs today. Thumbs up!




12) Legs and feet: These are much more relaxed now. Kudos to her Physical Trainer Ian. They are pushing against the ground more now in a prone position. Far from any crawling though.

13) Hypertonicity: This means arching back frequently, especially while being carried. This is still present, but much less frequently than in the first 6 months.

14) Immunization: We will start her first in 1 months' time. So fingers crossed she'll not succumb to any viruses till then!

15) Kidneys: Scanned for Wilm's Tumour at 6 months - negative.

16) Spine: Scoliosis has been detected and has to be monitored. Mommy will be sussing out an Chiropractor that specialises in infants so that we can hopefully slow or manage the rate of misalignment.

17) Early Intervention Programme: There are none whereby therapists come to your house (wish we lived in the United States!) The waiting list for a place in the school is up to 6 months. We've just signed up. Hopefully, a school environment stimulates her more, but it also opens her up to a whole world of infection. We'll probably have to get all her immunizations done before that.

Whew. What a laundry list. But there are so many other Trisomy babies with even longer, more medically complicated ones. That makes each item here, a blessing.

24 November 2008

Happy 9th Month

A Piglet for the little Piglet! (Yes yes, this mommy fell for the over-priced Disney cake marketing gimmick)

23 November 2008

Then & Now

Vera has reached the 3/4 year mark. The 1st picture shows her at 2 months. Looking at it brings back memories. I recall the feel of her, light as a feather. Like a marsupial. Today, she's put on the pounds - from being below the 3rd percentile of normal babies' weight at birth, she's now at the 25th percentile. In fact, we have to watch her weight gain, as it could affect her mobility and activity.

To all who have helped us get Vera to where she is today, THANK YOU from the bottom of my heart. Vera's milk mothers, T18 mothers who give endless support, Vasu her feeding therapist, grandparents, great grandmother, aunties, uncles, friends - you know who you are. And of course to the man who has given of himself so selflessly 24/7 to care for Vera...I could not have found a better man to marry.

Vera baby, happy 9th months to you!

20 November 2008

Why Is She Still Here?

This was the thought running through my head on the way to work today.

Why is Vera still here? Why is she getting better by the day? Why hasn't she had any apnea spells? Any seizures? Why is she responding to our attempts in feeding therapy? Why is she seeming to be part of the 10% and not the 90% of the statistics?

I can't speak for others, but I believe she's still here because I haven't learnt all the lessons I have to learn from her. But in these 9 months, she's already taught me tonnes. So much that I haven't actually got time to put them into practice.

She's taught me about compassion for others less able.

Before, I'd walk past people begging in the streets, usually out of some physical disability. Today, I do not hesitate to put a penny in the tin.

She's taught me about not holding grudges.

Ian and I differ at times on her care, but in the end we always let it slide, (he uses humour most effectively in dealing with me), because we know our focus is on her, not us.

She's taught me about the power of love.

That nothing is more endearing that hearing the "conversations" Daddy has with Vera. That love can make a man change the very way he speaks. Ian used to speak pretty soft and without much varying of tone. Ha, now check out the sing-song highs and lows! Porky Vera (as he calls her) responds sometimes with grunts and sighs.

But what's really heart-warming is seeing the effect she's had on my Grandmother. I've NEVER heard granny laugh. Nowadays, it's a common affair when she stays over. Vera has brought simple joy to her. I love the sound of her grand old dame laughter. She actually sounds younger.

Vera has a lot more lessons for me I'm sure. Will share them in time to come.

19 November 2008

She Swallows

Vera had her first VFSS today. For Mommy and Daddy, it was like she was going to take an exam. We told her "Do your best ok? Don't panic, stay calm. Remember mommy taught you to umm mum mum?"

We knew Vera's record for sitting still on her own: 5 minutes. So the challenge was keeping her still long enough for the study. We knew that once she cranks up, it'd be over.

It was quite an experience. Mommy had to wear a full-bodied radiation vest and was the only one allowed to be with Vera. Barium was put into her milk, water and vege puree so it'd show us the stuff as it travels down her airway. Vera was strapped into a chair and you could see an imaging of her mouth as shown here.

The first few teaspoons of puree were well-received by the little tubby. Then Vera started to act up. Mommy played her music toy, did her favourite light touch massage, and she calmed down enough for milk testing. It must have been the strange taste of the barium or the strapping down, for she was struggling to be free in no time.

We did not get to stress her enough to test her threshold (before aspiration takes effect). This is usually done so we know how much to push when doing therapy. But we got enough down to arrive at the following conclusions:

1) Vera can swallow. But it takes several tongue movements before 1 swallow.
2) There's a lot of tongue extrusion still (sliding tongue out instead of inwards). Something we need to work on.
3) The spoon works better than the syringe for giving her liquids. It stimulates more tongue movement as it pre-empts her that something is coming through. With the syringe, liquids pool in her throat which is dangerous.

Bottom line, Chu-chu did much better than I had hoped. We'll certainly have a happy 9 month celebration this weekend. Thanks for all your thoughts and prayers for her continued improvement!

18 November 2008

Sleep Woes

Vera is a night bird. We've all heard of babies that sleep at 8pm, wake up in the night for a quick feed and go back to bed and then rise early at 7am.

Why can't she do that? The girl sleeps at 6pm, wakes up at 9pm (when other babies are drifting off to dream land) and sometimes sleeps at 2am! The average sleep time is 12 midnight.

Mommy can't outlast her, so daddy takes over. But the little girl is pretty smart: "Hey, this is not the same ROCKER!!! I'm gonna fuss until I get my regular rocker!!!" Mommy has no choice but to wake up (extremely grumpy) to do the honours.

Last night, for the 3rd time only on record, she slept at 8pm! Our joy was shortlived. She woke at 2am then kept Daddy awake till 5am, before groggy Mommy had to wake up to be the rocker.

Zzzz...Starbuck coffee has been getting a lot of my business lately.

11 November 2008

Morning Glory

This is Vera when she wakes up in the morning. Minutes from opening her eyes, she'll smile and smile if you tap her hands to her thighs. That toothless grin, spreading from chubby cheek to chubby cheek. Moments like these I forget what she was born with, what she cannot do, what lies ahead. My baby is happy and that's all that matters.

10 November 2008

Big Sister

Over the weekend, Vera met some of her bigger friends. This mature young lady here said, "I can look after 2 babies," Spoken just like a big sister. Looking at her made me wish Vera had one.

08 November 2008

Swallow Study Soon

All the hard work with feeding therapy is paying off. We had a session with the speech therapist at the hospital, and Vera showed her what she could do with the array of tools - there's the Toothette, the Chewy Tube, the Gum Drop pacifier and the latest addition, a spoon!

Verdict: Vera IS swallowing (they listen to it with a stethescope to the jaw), BUT a little too fast for comfort. Meaning, she can choke. But it's not going into her lungs. Plus, she's begun to show signs of closing her lips around the spoon, instead of rejecting it. However, she can only deal with very small amounts. We've given her apple sauce, pear sauce, peach sauce, and carrot puree so far. Already she seems to like or dislike them.

Bottom line, she's been given the OK for a swallow study (VFSS) in 2 weeks' time. This is a big step towards our aim of oral feeding. We'll find out exactly how liquids are going down into her system. The outcome is we'll be able to determine what textures and consistencies best suit her, so we can continue practising them with her for better results.

We have Vasu to thank for where she's gotten to. He said we must all give special children the benefit of the doubt. He's working towards speech for her, treating her just like a normal child.

You like yum yum mum mum right, Vera? Keep it up!

05 November 2008

Stand Up & Be Counted

"5% is not 0%" says fellow mom Connie.

Indeed.

So why don't we find strength in numbers? Why don't we collate and compile our own living case studies of our fighter children? Why don't we - instead of tell medical professionals - let them see for themselves at a glance, the living, breathing 5%. The ones with the 100% personalities. And 110% will-to-survive.

I'm on a mission to make this simple, emailable document - 1 picture, 1 paragraph on each of our living children. Email it to me. Once I've compiled a sizeable number, I can email it out to mothers who can then print it out easily.

Let's take the lead from Vera, holding on to the settee, insisting on standing when she can't yet sit up.

Let's stand up and be counted.

02 November 2008

Big Walk

This morning we brought Vera to the Big Walk. It turned out to be a Little Walk, because the heat was just too much for her to bear and she cried all the way. We managed just 500 metres of the 5km route. Mommy's too ambitious...

Well, at least she calmed down enough for this shot with the dragonboats on the Kallang River. Hmmm...wonder if our "Tour de Parks" will be shortlived with her intolerance of heat...