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.
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.
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.
The weather's warmer. Vera is well. We're at Pasir Ris park. This is as good as it gets.
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.
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.
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!
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!
Someone got Vera a really pretty dress for Lunar New Year, with little chinese buttons. Unfortunately, we've forgotten who it was! So terrible of us.
And here we are, at 11 months, one more to the big ONE. It's like how when you run a marathon, when the destination is in sight, you almost feel light-footed and light-hearted. Here she is, smiling and responding more than ever, enjoy people's company, and her own much more. She's able to sit for longer in her seat, raise her head longer, and even manage a turn or two. She's more talkative than ever. Auntie Jacq once told me during the earlier inconsolable days that the time to enjoy her will come. How true!
Vera surprised us last night. She rolled over for the first time! We were so proud of her. She'd been practising lifting up one leg to get some turning radius for the past week, and last night she finally did it. Twice.
FINALLY, Vera's back. Mr Mucous and friends have taken a holiday and she's her old self once again. The collateral damage is that she doesn't breathe as well as before the bout - now there's a heaving sound through the night coming from her lungs, and intermittent choking on deep-inside phlegm - she sounds worse than Darth Vader.
But a happy girl she is. That's why we even ventured a Walk in the Park - her first time to East Coast Park. She had her first feel of sand and sea! One of the rites of passage of any baby, isn't it? Not much reaction from her though. But the sun in her eyes sure irritated her!
I love it when
When you can't beat the bug, go to sleep. We brought Vera to see another doc who gave her something to fight Mr Running Tap. It causes her to be drowsy, so she slept most of yesterday. Good for her, and good for us too. Vera knows she's Number One on everyone's minds these days.
I'd not been doing physio with Vera for the longest time. I'm at work, she's been sick. So I thought I'd try today just to see how she's doing. The little girl held this position for 45 seconds! So she IS improving - the last I counted was 25 seconds. She can't yet get herself into this position, of course. We place her. Kudos to daddy who has been doing PT with her at home.
Dear Vera,
Our dear little friend's best friends: Her fingers. Initially stubbornly clenched, they can now open up at times quite fully, although just for seconds - a feat for Trisomy 18 babies I believe.
And from thumb sucking, Vera has moved on to her index finger...helping to do her own therapy to straighten it.
This is the closest Vera will get to snowmen. I wonder if she'll ever get to experience snow. Come to think of it, neither have I. Maybe next winter, just maybe.
This is Vera's all-time favourite toy. When we make her press the buttons, they light up, and so does her face as well (or at least she'll stop fussing). In fact, her clenched fist will sometimes open up even, in preparation for pressing the buttons. She's definitely getting the hang of it.
An old school friend brought her daughter to visit Vera recently. I think her daughter can babysit Vera for us.
Here's the low-down on Vera at 9 months:
A Piglet for the little Piglet! (Yes yes, this mommy fell for the over-priced Disney cake marketing gimmick)
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.
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.
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.
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!
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...
