[tri-mosaic] Tegan

Hi Karen & Michelle,

Thanks for your replies on my update on Tegan.

Tegan's been on continuous oxygen all her life, so we are used to the
hassle! She has normally been on either 0.3 or 0.2litres/minute, though was
on 0.1 before her recent spate of sickness. It was looking like she was
nearly weaned! When she does come off it, it will probably be during the
day, and then back on for the nights. (We've been told that she will just
grow out of needing extra oxygen one day. We just didn't envisage her
needing it this long!!!)
Apparently the reason for her needing the extra oxygen is that she has weak
chest muscles, and doesn't inhale & exhale fully.

Yes, Tegan has a speech therapist, and a physiotherapist and a special
education teacher too. They each visit us at home for about an hour every
two weeks. Haven't noticed much progress with Tegan, speech-wise, only that
her "words" are getting a bit louder and a little more frequent.  Having
Jordan around her is a great help, I think, maybe Tegan is trying to copy
her. We try to sign a bit with Tegan, when we remember!!

Tegan is reasonably observant - she watches TV with great interest and
concentration! She doesn't notice as much as I think a normal child would.
Again our normal child benchmark, Jordan, comes to mind. Jordan can spy a
raisin on the floor at the other end of the room!!! Tegan would probably
notice her favorite toy a couple of meters away, and roll over to it.

That's about it for today.
Take care, everyone

Linda (mother to Texan 2yrs (mosaic partial trisomy 1) and Jordan 11months)
Auckland
New Zealand


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