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.
27 November 2008
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8 comments:
Sorry, 17) should be (Wish we lived in the United States!) At 2am in the morning, it's hard to think straight...
What a good update. She is amazing.
Hey, I wish you lived in the United States, too! I had such an urge to cuddle her when I saw the pictures tonight. She is so beautiful! And in some ways she is so much Mallorie's twin. Are those blood pressures without medication? Those don't look bad! Mal runs 130-140's over 90's or more, without medication. And the arching? Our pedi was watching her once and said it was reflux. Sure enough, she does it after refluxing or vomiting, and sometimes the only sign is her eyes will water a bit. With the tube going into her tummy from above, reflux is more or less inevitable for Vera, right? When someone would say (in the early days) that she was "posturing" and that it was "neurological," I knew it wasn't true. I just didn't have an explanation till the pedi caught her in action. She said it's a classic reflux baby posture. Nothing to "fight" ... except to hope the reflux gets better. We do find she gets some relief if we squirt some water in her mouth - to rinse the throat. Sometimes milk is better, because what she refluxes is so acidic. I don't know if Vera can handle stuff squirted in her mouth (we just do a cc or so), but it does make a difference for Mal.
I'll repeat ... I sure wish you lived in the US. Vera is made to be HELD and kissed!
love, connie
thanks Connie for your super helpful comments. Yes, reflux inevitable cos tube leaves an opening in valve to the stomach. Yes, initially we thought arching was neurological, but now we know it's her trying to burp, or throw up. Yes, I used to squirt droplets of water in her mouth, but now she takes sips by spoon! I'm really proud of her. Like Mal, she sticks out tongue like she's thirsty, and is rather happy with water wetting it.
Love that toothless smile!
Makes the whole world smile with her.
The Lims
Vera continue to hum right along..keep on truckin' Vera!! She's a beautiful growing girl :)
She looks so happy. Her smile is very contagious.
Beautiful smile. I check this blog whenever I need inspiration. Little Vera has that effect on me. Hugs to her!
Auntie Kay
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