Down Syndrome

Life looks a lot different right now. My almost 2 year old daughter who has Down Syndrome was recently diagnosed with acute myeloid leukemia. Over the last couple of weeks, she had issues with various things that we equated to normal toddler things. GI issues after changing formulas, teething, fevers we thought were due to the teething, and fatigue which we thought were due to her barely sleeping. Last Thursday, her eyes were swollen shut after I got her home from the baby sitter so I took her to urgent care. They didn’t want to mess with it so it was recommended that we go to the ER. So we took her. They did some blood tests and that’s when we found out the news.

She is currently receiving chemo treatment. Today is day four of chemo, and her last day of treatment this cycle. She will remain in the hospital for monitoring and observation for close to a month to ensure she is responding well to treatment. At some point, she will get to go home for a couple weeks, then be back in the hospital for her next round of treatment. She will need 6 rounds of chemo treatment. At least that is the plan right now.

So far she seems to be responding well to treatment. Right now just managing pain and trying to keep her as comfortable as possible and manage all of the fluid retention.

They expect treatment and overall management of the cancer to be up to two years. There’s a lot to be figured out during this time that we are just trying to take one day at a time. That’s all we can do at the moment.

#BloodCancer #AcuteMyeloidLeukemia #DownSyndrome

What Is AAC?
Augmentative and Alternative Communication or (AAC) refers to tools, strategies, and systems that can be used to help support or replace spoken language for people with speech or language impairments. Not only that, but AAC can also help people with developmental disabilities like autism, cerebral palsy, or Down Syndrome express their thoughts, needs, and ideas. Last but not least, some examples of these tools, strategies, and systems range from low-tech options like picture boards to high-tech options like apps that produce voice output.

Hi, my name is Lucy4849. I'm looking for

#MightyTogether other famous Down syndrome people

Hi, my name is CarriePuzen.

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What Is Down Syndrome
Down Syndrome is a genetic condition that is caused by an extra chromosome 21, resulting in 47 chromosomes instead of the usual 46. This extra genetic material alters the development of the body and brain, leading to certain physical features, developmental delays, and a risk of some health conditions. Last but not least, the good news is that most people with Down syndrome often have a wide range of abilities, can thrive, and live a healthy and productive happy life thanks to different kinds of therapies and educational supports.

Hi, my name is lovingcaregiver. I'm here because my sister has been diagnosed with parkinsons, and my friend's son has down syndrome and multiple sclerosis.
I appreciate this community exists.

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Hi, my name is JMCrouseauthor. I'm here because I am the mother of a daughter who was diagnosed at birth with Down syndrome then later with Alzheimer’s. She has Type 1 diabetes and is on an insulin pump. I an also a foster parent for adults with developmental disabilities and caring for my 87 year old mother.

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