A Happy Place

Mommy went along to Vera's school for the first time yesterday. It was such an eye opener. The teachers were so passionate. The therapist too. We could see the marked difference compared to the one we saw at the hospital. Vera enjoyed the PT, instead of crying like she did at the hospital. The feeling I got, was that this was a 'happy' place. Yeah. Just what I want for the little piglet.

Is She Cross-eyed?

Some of you may be wondering if Vera is cross-eyed. Well, she isn't. The reason her eyes look this way is because of the cloudy veil covering the outer halves of her eyeballs, giving the effect. In her bigger left eye, the haze has cleared just past the iris, and that's enough to see well. In the other eye, it still hasn't. So the little girl is relying on one eye to see. So she opens it up really big!

These days, it's so easy to get a big smile, all you need to do is let her stand.

Another Useless Visit

Vera went to see the Renal doctor today (the same one that called her 'low IQ'). All we wanted was a routine kidney ultrasound for Wilm's Tumour. As suggested by the literature we've read, we should do one every 6 months for Vera.

Ian brought Vera and I was late for the appointment (from work). When I saw him, he had just come out of the room and was fuming. He had asked her for the ultrasound, and she said there's no need because Vera's fine, since her blood pressure is ok. And said Vera doesn't have to see her anymore. She asked what is the basis of getting a scan and we told her about the literature we've read from the states, where so much more research is done on T18. She was quite disbelieving. Ian asked her on what basis she's judging that Vera is ok, and she says because she is the doctor. Okay. You're the head of the pediatric renal dept, so kudos to you for a great attitude.

Why can't she get a scan? We are the ones paying for it. Why doesn't she want to see Vera anymore? A waste of time on a lost cause?

You know what, WE don't want to see her anymore either. If you can't change 'em, change 'em.

Presents Galore

Our little friend is tired out from all the excitement yesterday...lots of catching up on sleep today. Thank you all for the lovely presents.

Vera Turns One

Never did we think this day would come. But it has.

Here we are, among friends and family in celebration of a little girl who has defied logic and surpassed expectations.

It has been the most eventful 12 months of our lives. But those of you who cared graced our journey with love, kindness and most importantly, precious personal time.

Aunties who looked after her; mothers who blog to offer advice and encouragement; mothers who offered their breastmilk and supplements; grandparents who delivered milk; friends who brought little friends over; colleagues who packed lunch and bought diapers and many more.

If we had worried if you would accept her despite her condition, we needn’t have. Your love and concern for Vera comes shining through. She feels it in the way you talk to her, sing to her, cajole her and can’t take her eyes off your face. She’s loving being here in this world, perhaps even more than many of us. Today is for you, as much as it is for Vera, in thanks for all that you’ve done for us.

The Big Celebration

Vera will be the star attraction tomorrow. We'll be celebrating her 1st birthday with family and friends, and the guest list has come up to almost 90 people! Hopefully, the little girl won't be too overwhelmed. But the stimulation could mean very good sleep after the party for her (or the opposite). Due to her low immunity, we are advised to keep her away from big crowds. So fingers crossed that she doesn't catch a bug from anybody. Worry, worry. 'Tis what all mothers do.

Not Being There

A colleague asked me, "How was Vera's first day at school?" I was stumped. I didn't know. I wasn't there. Vera has already been at Rainbow Centre twice. She goes there twice a week, for two hours each time. Who are her classmates? Who are her teachers? How is she taking to the new environment? All the things a mother should know. It struck me that I may be missing out on what is probably the highlight of little Vera's life (don't we all remember how much school meant to us?), because of work.

This is the dilemma of every working mother, isn't it? Working to pay the bills versus spending time with your child. The worst (or best) part is, Vera is now SO responsive, and SO charming that I am actually falling in love with her. As she grows, she most definitely grows on me. Yet, I am not one who can take staying at home full-time. To work or not to work? Perhaps the ideal solution is part of both. How to achieve that kind of balanced arrangement is the big question!

Walk In The Park 7

The weather's warmer. Vera is well. We're at Pasir Ris park. This is as good as it gets.

(The little girl is at present discovering the use of her hands, how they move in front of her face. See how her hands open up? Those used to be tightly clenched at birth, a Trisomy 18 trait. Behold the power of touch!)

Vera's First Tooth

And here it is. The fruit of all Vera's thumb-sucking labour. A little jaggety-edge and leaning at an angle. One year old - one little tooth. How apt.

Chiropractor Visit

Finally after months of dallying, Vera sees a Chiropractor. She confirms that her upper spine is curving to one side quite prominently (scoliosis), as a direct result of her always turning her head to one side (torticollis). As for her right leg it probably because that side of the hip is more locked up and has less motion, causing it to seem shorter. She is also still hyper-extending her neck (head tilting backwards), a sign of neck muscle tension.

Course of action:
1) We have to continue to get her to look to her right instead of her favourite side. We must be careful of overstretching though, because that could tighten the ligaments even more.
2) We have to support the back of her head and keep it from tilting backwards when we carry her.
3) We have to work, work, work at strengthening her neck muscles. Much more tummy time and head lifting is needed. Unless her neck issue – torticollis - is resolved, there’s really nothing much else that can be done.
4) We have to do less carrying and more Vera-sitting-by-herself. Best to have her facing forward, sitting in our lap. Ok, now I’m considering the special bumbo chair. The car seat isn’t ideal, it puts much pressure on her spine.

Teething Toy

This is Vera's hot favourite - not some water-filled silicone teether but a therapy tool called the Ark Probe. The rubbery protrusions are a delight for her itchy gums - one lower front tooth is already peeping out. She's also learning that she can control the Ark probe in her hand (I lightly help her grip it) and move it to and away from her mouth. She's beginning to realise that moving her arm can bring the fun thing for her to bite. Without a doubt, THIS GIRL IS LEARNING. Slowly but surely. All she needs is time.

Feet Fancy

These are your feet, Vera. You often see babies sucking on their toes like it's the most natural thing. But for Vera, due to the stiffness of her limbs and weak spine, she hasn't since birth been able to lift her feet into her line of sight. Until now. Yes, after months of home physical therapy, her legs are now supple enough to bend for her to see easily. Will she get to suck her toes? Let's give her a few more months!

Going To School

Vera is going to school! Can you believe it? Way before normal kids haha. Okay, it's not a school school, but an early intervention programme. Ian and I visited the school today. It has a nice name too - Rainbow Centre. (Yishun Park School). It's brand new, just opened less than a year, has got a big swimming pool and looks like a mini country club. For the first time, I entered the world where disabled kids go to learn. As we toured the school grounds, we saw a puny little girl, probably 4 years old, taking tentative steps in a walker. She walked nearly 2o metres in it! Looking at her, I got all emotional. "Wow, how hard she must have worked to do that!" Tears welled up in my eyes. Would Vera make it to one day accomplish that? The thought overwhelmed me.

What is normally a good few-months wait for a placement turned out to be an immediate vacancy. Vera could be going to school as early as next week! Excited as I am, I am wary about her catching more viruses there. Plus, she hasn't gone for any of her vaccinations, so that is another worry. But that's not gonna stop us from letting her experience going to school. Even if it's for one day!

Mucus Medicine

Today I'm blogging about the medicine given to Vera for her mucus - Fluimucil. It's known to dislodge phlegm from the lungs and help get it expelled by reducing the viscosity. And boy, it's effective alright. Immediately after giving it to Vera, the green goo started to purge from her nostrils freely. This was not as apparent when we gave her Salbutamol. But I must admit it was a little too effective at first - and Vera couldn't cope very well with the copious amounts of dribble and kept choking. But you can hear that her breathing is much better now, so I'm certain there's less mucus in the airway now. Hopefully, the little girl will be back to normal soon...don't be fooled by her smile here, the nights are a dramatically different story!