Tips/resources/reading for parents new to SN?
Feb 19, 2015 15:31:21 GMT -5
Post by bzeetyd on Feb 19, 2015 15:31:21 GMT -5
Hey all -
I'm wondering if you have any recommendations for reading (books, whatever) or resources (sites, blogs, organizations) for parents/moms of SN kids?
When I intro'd I mentioned my daughter (who's 1 today!) is having a brain MRI* soon (rescheduled to early March due to a fever) to look for some reasons behind her developmental delay (gross motor) and potential optic nerve atrophy. As I've talked to her pediatrician and PT, it seems like her flags (constipation issues, low weight percentile, crooked smile) are clustering around a CP type of diagnosis - but nothing official yet, until the MRI or maybe even further down the road.
She got glasses last Friday and is doing super awesome in them. This morning our PT mentioned orthotics to help her when she's ready to stand. Sure thing.
So, so, so... I feel like it's like happening for us in slow motion or something. I'm adrift in unfamiliar waters. I need some kind of coral reef of reference to cling to.
I'm a person who thrives on resources and info. I'll join a support group or specialized forum when we get a DX and we'll find all the right places to be but until then, I need something to soothe myself, to help me get into this new world, to help me deal with all the emotions I'm having. Something beyond "Welcome to Holland."
What was helpful to you when you were first dealing with a potential DX or an official DX?
Thanks in advance.
P.S. I do have a fantastic therapist who specializes in IF issues, loss, and even has a CP daughter herself, which is very convenient to my journey.
* P.P.S. I had some recommendations to look into a pediatric neurologist before the MRI and I did. Our children's hospital requires the full 90min scan before they'll see us, so we're all good. Thank you to those who gave that advice and steered us to check it out. Much appreciated.
I'm wondering if you have any recommendations for reading (books, whatever) or resources (sites, blogs, organizations) for parents/moms of SN kids?
When I intro'd I mentioned my daughter (who's 1 today!) is having a brain MRI* soon (rescheduled to early March due to a fever) to look for some reasons behind her developmental delay (gross motor) and potential optic nerve atrophy. As I've talked to her pediatrician and PT, it seems like her flags (constipation issues, low weight percentile, crooked smile) are clustering around a CP type of diagnosis - but nothing official yet, until the MRI or maybe even further down the road.
She got glasses last Friday and is doing super awesome in them. This morning our PT mentioned orthotics to help her when she's ready to stand. Sure thing.
So, so, so... I feel like it's like happening for us in slow motion or something. I'm adrift in unfamiliar waters. I need some kind of coral reef of reference to cling to.
I'm a person who thrives on resources and info. I'll join a support group or specialized forum when we get a DX and we'll find all the right places to be but until then, I need something to soothe myself, to help me get into this new world, to help me deal with all the emotions I'm having. Something beyond "Welcome to Holland."
What was helpful to you when you were first dealing with a potential DX or an official DX?
Thanks in advance.
P.S. I do have a fantastic therapist who specializes in IF issues, loss, and even has a CP daughter herself, which is very convenient to my journey.
* P.P.S. I had some recommendations to look into a pediatric neurologist before the MRI and I did. Our children's hospital requires the full 90min scan before they'll see us, so we're all good. Thank you to those who gave that advice and steered us to check it out. Much appreciated.
MFI issues
