Education | Lessons from my daughter

With a rate of 1 in approximately 50,000 birth, Cri du Chat randomly appears 7 or

8 times per year in Canada. In a country covering 9.985 million squared km, these 7 or 8 babies can be really far away for one another.

For us, when Emily was little, it meant no other families were near by.

For us in 1999 when she was diagnosed, it meant that our only source of information was a really slow internet connection.

Fast forward to today, the internet is faster, facebook is full of support groups and many bloggers out there raising awareness.

I am one of these bloggers!

Cri du Chat Syndrome is characterized at birth by a high pitched cry, low birth weight, poor muscle tone, microcephaly, and potential medical complications.

Cri du Chat Syndrome is also called 5p- (5 p minus) Syndrome.

The term “5p-” is used by geneticists to describe a portion of the short arm (p) of chromosome number 5 that is missing.

Cri du Chat Syndrome is a spectrum disorder.

Children born with this rare genetic defect will most likely require ongoing support from a team of parents, therapists, and medical and educational professionals to help the child achieve his or her maximum potential.

Find more about about Cri du Chat syndrome at 5p- Society

If you’ve been following our blog for awhile, you know Emily is not defined by her syndrome!

Over the week, I will do my best to tell you more about Cri du Chat Syndrome!

We have a facebook page: If you want short updates and timely pictures of the little things that are happening in our life, please like and follow Lessons from my daughter‘s page.

You can also find me on Twitter at @plebrass

I am on Pinterest too: Lessons from my Daughter

#CriduChatAwareness

Recollection

Emily woke-up tired this morning… It might have to do with her being awake at 1am looking for her phone. She went back to bed without it than she was up again at 2am to use the washroom. I don’t know if she was awake between 1 and 2am but she wasn’t waking up at 6:30am.

All that to say that I finally got her up and moving along but we are not getting any extra out of her today. That means no writing so instead, I will tell you something you might not know yet about Emily.

Emily’s power of recollection!

Emily loves toothbrush, at any given time, she has anywhere between 5 to 10 toothbrushes and in cup in the bathroom. Why so many? She loves them and at every visit to the dentist, she gets a new one and opens it right away. She buys them at the drugstore and sometimes at the grocery store, she LOVES them.

Yesterday, I needed a small brush to clean one of my ring so I went in that bathroom and grabbed the oldest looking toothbrush there. I couldn’t grab mine or Jonathan’s as we both only have 1 toothbrush each.

I grabbed a toothbrush that was ready for garbage, I cleaned my ring than tossed the toothbrush.

At bed time, Emily went to the bathroom to get ready and from across the room I heard… Where is my orange toothbrush?

I couldn’t believe that she knew the orange toothbrush was missing. Someone could argue that she was emotionally attached to this particular toothbrush but she recollects/remembers things like that regularly.

It is as if even way back when she couldn’t talk, Emily has been learning and remembering than now, she tells us things, she recollects events, toys, people and places. Sometimes it is recent, like last night while other times it is things from years past.

You know, this is the girl who wasn’t supposed to recognize us, show emotions, she wasn’t supposed to understand the world around her and wasn’t going to talk to us.

Take that Cri du Chat Syndrome

A to Z Challenge 2016 – Lessons from my Daughter (PR) #801

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We have a facebook page: If you want short updates and timely pictures of the little things that are happening in our life, please like and follow Lessons from my daughter‘s page.

You can also find me on Twitter at @plebrass

I am on Pinterest too: Lessons from my Daughter

I just discovered StumbleUpon but I have no clue what to do there: I believe you can find me under plebrass but I need to spend quality time there.

Find more about about Cri du Chat syndrome at 5p- Society

Emily has a her own page in the family stories , you can find it here: Emily