- Pregnancy
- Baby & Toddler
- Parents
- Getting Pregnant
- Baby Names
- Product Reviews
-
Registry
- Community
-
More
Want a personalized experience?
Download the free app
Adoption
CaptainSerious
member
Well, it's official
CaptainSerious
member
in Adoption
J has neurofibromatosis type 1. (It's a condition in which benign tumors grow on nervous tissue, caused by a genetic mutation.) We knew that he most likely did, but today the diagnosis was confirmed. They didn't do a genetic test, which I thought was weird, but apparently it's uncommon for them to actually do that. So, we're going to have him seen by the clinic, and then we'll likely have annual appointments to monitor the condition unless/until we have reason to do more.
It's a bummer, but nothing we didn't expect. The weird thing is that the condition is completely unpredictable and changeable, so there's no way to know if his case will be totally mild and just a matter of a few bumps in addition to his cafe-au-lait spots or something really extreme, including brain/spinal tumors or possible malignancy of some of the tumors. Also, symptoms tend to flare-up with hormone changes, so he might be mild until puberty, or his 20s, or 40s, when things could change drastically. There's just no way to know, and that's a bit unsettling.
So, there is is. No surprise, but still, blah. Oh well. We'll see. I know in time we'll get used to this and it will be no biggie, but right now I feel as if we'll be living life always wondering when the big, bad wolf outside if gonna finally come knock on our door. Blah.
This discussion has been closed.
Re: Well, it's official
Oh, drats! I was so hoping you'd be surprised and he wouldn't have NF....
I know you said it was expected but you can't help be let down. I am so sorry.....
God willing, you will have a pain-in-the-bum once a year appt and that's all.
Many prayers that J's case doesn't progress.
Application approved Dec '11
Mar '12: Homestudy interrupted by change in Uganda requirements - where do we go from here?
After searching and searching, back with Uganda but with our homestudy agency's program.
Homestudy complete July 19
USCIS I-600A submitted July 20. Biometrics appointments arrived Aug 17; fingerprinted Aug 21; 171H received Sept 25th. On the wait list Oct 1st: #18. By Jan 25th, we're #13!
Come home, baby A!
I'm sorry. I know it is a tough diagnosis to deal with since it is unpredictable as you said.
My friend's daughter has NF. She is 7. She has a few spots and she does have some of the eye problems. I know there are loads of resources out there and if you ever want any recs I would be happy to ask my friend for you.
I hope you have an easy road and that your LO remains as healthy as possible.
OH man, that stinks.
You're right, it will take time to get used to your new normal. Knowing you, I'm sure you'll find some great support groups to help you figure out what's potentially coming down the pike.
I am glad to see you post though
Hang in there