Suzymarie

Marchmamma

This is going to sound so stalkerish, but I have been looking for you for about a year!  I remember when you posted on parenting about your son having NF.  I have NF type 1 and wanted to offer support. 

 

suzymarie

Hey hey!  No it doesn't sound stalkerish... I remember random things like that too.

 

Do either of your kiddos have NF?

 

 

Marchmamma

Not that we know of yet, but the pedi will keep them on the radar for the next few years.

Which type does DS have 1 or 2? 

I was born with my "birthmarks" but it wasn't .until I was 12 when they dx me with NF.  Has your DS had his blood tested?  I haven't.

Gummybear

I am a stalker too ladies. I also have NF. DH and I are thinking about trying w/o the PGD. Marchmamma, who do you see for yourself? I am seen at UPenn but I don't like the Dr. there. At all.

suzymarie

DH and DS have NF1. 

 

We thought about PDG/IVF but we would be paying OOP and decided we would rather add to our family now then wait 10 years to save up. 

 

We see a geneticist at the UofMinn names Susan Berry.  She has been super awesome so far.... as long as you don't mind waiting 6 months to see her.  We go once a year for checkups for both DH and DS.