October 3rd…….Veronika’s Birth Day, one of the most magical days, because Veronika survived her birth, approx 70% of babies with DS don’t make it that far….
October 4th,……..Veronika was given her medical Down Syndrome diagnosis the day she was born, however to be clinically diagnosed with DS they had to ‘grow cells’ for her ‘official’ diagnosis, the results came back for Trisom
y 21 a couple of days before Veronika came home from hospital, she was 5 weeks old when the results came back ♥ It was a very long 5+ weeks traveling into NICU every day, to be with Veronika, all the while waiting for clinical confirmation of what we already knew..
October 5th…. Hypotonia, or low muscle tone…Almost all babies with Down syndrome have hypotonia and appear “floppy” at birth, and is one of the 1st indicators to the midwives, OBGYN’s, nurses that a newborn may have down syndrome….Veronika was incredibly ‘floppy’ at birth, but we didnt notice this, as we were so relieved she was actually born alive ♥ Veronika 1st started se
eing a physiotherapist when she was in NICU and was only a week old, she helped with positioning Veronika for feeding, while the lactation consultant and speech therapist helped with their side of feeding too, sadly though as much as I tried to breastfeed Veronika she tired too quickly due to her hypotonia, and I ended up expressing for her(to she was 9 months old, when I realized my body and mind had enough) so Veronika was fed with a special bottle called a haberman feeder, and the rest was put through her Nasalgastric(NG) tube….
October 7th………If I could go back in time to immediately after we were told Veronika had been medically diagnosed with Down Syndrome….this is what I would tell myself.
October 7th…..community….our family is blessed with such a supportive community. Today we were invited to Sailability, with Tascare a day of fun catching up with friends we have met on our journey with Veronika…..we all need a day off from therapy every now and then.
October 8th…….Veronika has 3 copies of the 21st chromosome, known as DS or Trisomy 21, I would also say that Veronika has been genetically modified for extra cuteness…..
October 9th….. just because Veronika doenst speak, doesnt mean she doesnt have anything to say….when you see Veronika talk to her like you would talk with any other 4 year old…get down at her eye level, and talk with her, she will soon let you know what she wants in her own unique way, a way without verbal ‘words’ ♥
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