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Down Syndrome’s resilience —part one

Updated: Nov 9, 2023

Each and everyday day we can become challenged with different medical issues and concerns for our children, but it seems to amaze me on how great the temperament is when it come to children having multiple surgeries. Journeigh has had three surgeries to date.

When Journeigh was born , yes I was already aware of her condition and upon delivery. Nothing looked out of the ordinary just like my other two children at birth, so in my mind I was thinking ok this is easy what was I afraid of . Until day two, that's when I started to realize something was wrong, Journeigh was not eating/drinking . Now I've had two children and had some experience on how to Brest feed, so being prepared wasn't the issues here.

Journeigh's little body was not doing much beside laying on my chest with her warm little face trying to take her first breaths.

The ealry hours of day two , my intuition kicked , I called the nurse and explained to her that my daughter has not eaten yet , of course she looked at me and says" it can take a little before the child is ready especially since she's premature"... hmmm... that did not sit well with me at all , for those of you who know me . I'm that mom whom stands her ground. So I had to be direct towards the nurse and tell her to bring the OBGYN doctor in because something just isn't right and it's not the Down Syndrome, the nurse tried to push back but I wasn't taking no for answer. Within the hour the ONGYN doctor come in and examined Journeigh, and said that everything was ok and she's just adjusting to her new surroundings. I stopped that doctor in her tracks and said " something is wrong , she's not eating, nor is she releasing any of her marconium ( the first baby poop). The doctor looked puzzled ... as the doctor steps out to gather her thoughts, she comes back and says let's get an x-ray . As they take Journeigh for the X-ray , all of my emotions are going in millions of directions. It seemed like hours they were gone, but it was like 15 minutes.

As the technician returns with Journeigh the doctor comes into my room and says those words you never want to hear "we got to get Journeigh immediately to the children's hospital ". At that point my heart dropped.

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United to Empower, Advocate and Support children and families who face daily obstacles with being dually diagnosed with Down Syndrome and Autism that relates to the continual support of additional medical, social, educational, and financial resources .

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