“Love and a Leap of Faith”
Vera was born full-term by Cesarean at 1.9kg. She was diagnosed shortly after with Trisomy 18. This feisty girl is among the rare 10% of T18 infants who do survive beyond their 1st year. Despite her medical issues, she continues to defy her death-sentence diagnosis. She enriches our lives, just by being alive. Vera was cared for by daddy full-time in her first year, and now it’s mommy’s turn. She recently became big sister to baby brother Daen (pronounced “Day-ian”).
In 2013, she had 2 hospital stays – one in June and another in December – both for gastro-enterological infection, with prolonged bouts of Diarrhea.
So far we are averaging 2 hospital stays a year, so I’d say she’s doing alright.
Here are some updates that we are very thankful for:
1) Fits: Vera’s myoclonic jerks (fits) have not resurfaced since September 2012, when she was put on fit medication Epilim. The course of treatment is 2 years, so by September 2014 if she stays fit-free, we can be on our way to weaning off the medication.
2) Breathing: Vera’s biPAP breathing requirement setting has remained largely the same. Results from the sleep study done end of 2012 are out and her requirement is 15/5. This is lower than the 15/7 she is currently on. This is the first time the settings have gone down instead of an expected increase. This is a reassurance that she is well supported for her breathing during sleep, or that she is growing stronger and doing more of the breathing work herself.
3) Gripping: Vera has starting to grip simple objects with her right hand. She has gradually become more open to holding things, even if it is for a few seconds.
4) Kicking: She has discovered the joy of kicking, and loves it best when in the pool. Feeling her move so freely and joyfully in the water makes me wish I could bring her swimming every day.
5) Visiting: We brought her out to more CNY house parties this year. When she was young, she hardly visited, for fear of infection. We’re happy that she’s stayed healthy throughout the festive period.
Follow Vera at http://mylittlevera.blogspot.com/