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3. My youngest nephew got diagnosed with pachygyria :( There's not much about it in Polish, and English it's all medical blah blah blah for us. So far we know since it's a brain malformation that there's no cure for it. And the good thing is, he doesn't have any symptoms which go with that illness. Well he's a little delayed (comparing to his older brothers), but still within the norms of toddler physical/mental development. So we just have to monitor him and that's all for now. But still, it's heartbreaking :(

Filed: Citizen (apr) Country: Canada
Timeline
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23 minutes ago, SAT said:

 I got 13 from them :P 

 

Then the

3 silkies and 4 easter eggers from actual breeders/farmers :) 

 

26 minutes ago, Asia said:

3. My youngest nephew got diagnosed with pachygyria :( There's not much about it in Polish, and English it's all medical blah blah blah for us. So far we know since it's a brain malformation that there's no cure for it. And the good thing is, he doesn't have any symptoms which go with that illness. Well he's a little delayed (comparing to his older brothers), but still within the norms of toddler physical/mental development. So we just have to monitor him and that's all for now. But still, it's heartbreaking :(

Oh no :( 

Like Steve said check out fb groups you are bound to find good info with them. 

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Filed: Timeline
Posted

Yes, I checked the facebook groups and told my sister about them. Nothing in Polish and only in English. She knows English, of course, but she's not ready to face the internet and all its opinions about it. I think she has to find the balance in the real life and in the real situation first. I've already told her that from what I've read Bart can be pretty normal with this disease. That there are different stadiums of pachygyria and not one simple final result of it. I mean there are children who can't move at all, who stopped their development at fifth month or so of living. And Bart is walking, running & all... He doesn't speak yet, but can communicate pretty good.

I think I've read somewhere that there's only 40 children in Poland with pachygyria. I suggested to start a Polish group on facebook, but it's all up to her.

Filed: Citizen (apr) Country: Canada
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It's a lot to absorb and figure out. Starting a FB group would be good for her when she is ready even if it's just for her to talk to other moms. 

 

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Met Playing Everquest in 2005
Engaged 9-15-2006
K-1 & 4 K-2'S
Filed 05-09-07
Interview 03-12-08
Visa received 04-21-08
Entry 05-06-08
Married 06-21-08
AOS X5
Filed 07-08-08
Cards Received01-22-09
Roc X5
Filed 10-17-10
Cards Received02-22-11
Citizenship
Filed 10-17-11
Interview 01-12-12
Oath 06-29-12

Citizenship for older 2 boys

Filed 03/08/2014

NOA/fee waiver 03/19/2014

Biometrics 04/15/14

Interview 05/29/14

In line for Oath 06/20/14

Oath 09/19/2014 We are all done! All USC no more USCIS

 

 
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