December 22, 2008

Merry Christmas!



The see everyone look here

3 comments:

Mom Of Many said...

She is precious beyond words...so very sweet! Love, Linny xo
PS I continue to pray for Sydney's healing...would it be appropriate to have a group fast for her healing? I will post about it when you are ready, if you want...

ogjamie said...

Sydney is adorable. We just returned from China at the end of December with our daughter. Three days after returning, we took her to our family pediatrician. She noticed some spots that we thought were just harmless birthmarks. She said that we needed to see a neurologist because they could be a sign of NF. She has at least 10 of these spots. After visiting both a pediatric neurologist and geneticist, we (and the doctors) are almost certain she has NF-1. We are now awaiting the results of genetic testing that was suggested by the geneticist. Those results should come in within 3-4 weeks. We're not expecting good news...just a more accurate diagnosis.

Our daughter has also seen an ophthamologist and he saw no signs of an optic glioma - one of her eyes is slightly lazy so there was some concern there. We have not yet had an MRI done because there's not physical indication that she has any tumors at this time. She's 13-months so it's not uncommon for the only indicators to be the cafe au lait marks. Obviously, given the variability of NF, we have no idea what the future holds.

We adopted in the non-special needs program so this was a huge shock to us. The cafe au lait spots were NOT noted in the medical report we received with the referral, even though that same report noted a small and faint birthmark on her cheek. (and this birthmark is not a cafe au lait spot) Several of her spots are 2-3 inches in length/width so they were obviously visible.

We're just trying to soak all of this in and figure out what to do next. We are angry at our agency for not preparing us for this possibility (they made it sounds as if we'd definitely get a "healthy" child if we went through the non-special needs program) and angry at China for not providing us with this information in the pre-adoption medical report.

I can certainly sympathize with your situation...and obviously, you've been dealing with it much longer than we have. But it looks like you are going above and beyond for your little girl...and she certainly looks happy. All the best. And any words of advice would be appreciated...this is all just so new to us.

Leslie said...

Sandy, I have something for you over at my blog, just a little something. How is Sydney doing? Don't you have an appt. coming up in February? If you can, let us know an update and/or how to pray. I think about her all the time. She is just adorable as are all your babies!