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↠ It’s October! And you know what that means, it’s Down Syndrome Awareness Month! Remember when I wrote about being at a newborn photo session when Tegh was just 7 days old? That session was supposed to be 3 hours long. Halfway through, while Gurinder and I were sitting back watching Tegh get his pictures taken, I received a phone call from our midwife letting us know that Tegh’s blood work results came in - confirming he had Down Syndrome. So we had to cut that session short immediately to meet with our pediatrician. @jennreynphotography (who is also a paediatric nurse at BC Children’s Hospital) invited us back 2 weeks later to complete the session. So here’s the sweetest boy in all the land just 3 weeks old. And guess what? He’ll be turning 3 in 3 weeks! So, October is a month full of joy + celebration for us and although I advocate for DS 365 days a year, I try to make an extra effort during the month of October to create awareness - especially within the South Asian community because a diagnosis is not a prognosis. ° ° ° #downsyndromeawarenessmonth #downsyndrome #downsyndromeawareness #upsyndrome #upsyndromenotdownsyndrome #nothingdownaboutit #upwithdown #downmagazine #trisomy21 #t21 #theluckyfew #advocate #advocatelikeamother #advocateforchange #inclusion #inclusionmatters #vancouvermom #newborn #newbornphotography #newbornphotoshoot #newbornphotographer

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↠ a little over a week after we received Tegh’s diagnosis, I wondered about the results of the blood draw we had gotten that day. I hadn’t received a phone call from the pediatrician’s office so I called in to ask if the results were available. The receptionist said Tegh’s CBC (complete blood count) was fine but they weren’t able to run the thyroid panel because there wasn’t enough blood drawn. So on November 7th, I took Tegh to get another blood draw. It was a week before Christmas when I mentioned to Gurinder that I wondered if Tegh’s blood work results came in and if everything was okay. I remember Gurinder saying “it probably is otherwise they would’ve called...” but I needed to hear that everything was okay so I called to find out. The receptionist told me the results came back, but the pediatrician hadn’t reviewed them yet. I asked the receptionist if she could take a look to see if everything was okay. “His TSH is really high” she said. I remember feeling the anxiety flooding in. “What does that mean?” I asked. It meant he was hypothyroid; his thyroid gland was under-active and not producing enough thyroid hormone to keep the body functioning optimally. I’ll go into more detail about hypothyroidism in a separate post because the thyroid + Down Syndrome go hand in hand, and it’s 🤯 stuff. I should’ve received a phone call from the pediatrician’s office after they received notice that there wasn’t enough blood drawn to get the thyroid panel done, but I didn’t. I should’ve also received a phone call as soon as his results became available, but I didn’t. When I called in weeks later, his results hadn’t even been reviewed. When I asked the receptionist when the results came in, she said that generally results are available within 24-48 hours of the blood draw... And that was what set me off. I was upset that his file was just sitting in a pile for weeks, but I was really hard on myself too... Lesson No. 1: It is my responsibility to call in at the 48 hour mark after a blood draw to find out if results are available and have them e-mailed to me #advocatelikeamother

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Comments

  • Harpreet said:

    Tegh 💙 Makes my heart so happy seeing your posts/stories!

    October 11, 2020

  • Gagan Darer said:

    Such a blessing! ❤️

    October 11, 2020

  • Daisy said:

    Tegh is the cutest and Daman you are an amazing mom! Thank you for sharing your knowledge and journey. As a new mom, the knowledge you have shared as been so helpful💕💕

    October 11, 2020

  • Rick B said:

    Tegh is such a handsome boy! ❤️

    October 11, 2020

  • Pawan Rai said:

    Tegh is so precious and you are an amazing mom! The knowledge and personal experiences you share about down syndrome is an inspiration to other parents. I love the pictures!❤

    October 11, 2020

  • Raven Mann said:

    Love this ❤❣❤

    October 11, 2020

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