Dying to hear from CaptainS!!!

wille2b · January 2011

hope you have some good news!

purplerhi · January 2011

I was wondering also and checking one last time before hitting the sack. Hope its good news!

MrsKolasa · January 2011

Me too! I keep checking to see if there's an update.

CaptainSerious · January 2011

Hi, I was just coming to update.

The information from the doctor is encouraging. As I suspected, there's just no way to give a definite prognosis, because this particular genetic disorder's symptoms are aggravated by hormone fluctuations, so as a child ages and goes through puberty, for example, the symptoms can worsen significantly.

Right now, though, J only has a presumptive diagnosis, based on his displaying 2 out of 5 (or possibly 6) diagnosing factors. This means he may not even have the disorder, and the only way to tell for sure, since their is no available family history, is to do genetic testing. If he does not have the disorder, than he likely is relatively healthy, since the indicating factors are mild and otherwise harmless. If he does, then there's still a pretty good chance it's a mild case, since he's not showing the 3rd common diagnosing factor yet (and 90% of children with the disorder show this by the time they are 6). Again, there's no sure way to predict what will happen as he ages, but all signs are very positive.

The way I look at it, if I gave birth, especially at my age, there would be risk of genetic and other medical issues, too, and the risk that J's disorder will explode into a severe case does not seem that much greater than the risk that would be associated with me having a biological child at this point in time. Also, we met him, and have a good idea for his development. Yes, he has a language delay, but he's also very expressive and involved in his surroundings and very well adjusted. There's a fair chance his delay could be related to his life situation and is not a developmental delay symptom of not his disorder. And even if it is related, it's mild and if that's the only delay, I think we can take the gamble that he will continue to progress in this area.

To further explain what I said this morning about disfigurement, J is presumed to have NF1, or type 1 neurofibromatosis. It's a genetic disorder that causes (almost always benign) tumors to grow on nerve tissue. It can have a lot of severe effects, including seizures and such, but it's most common symptoms are skeletal (scoliosis and bowing legs) and tumors on the skin. In the worst cases, the tumors can cover significant portions of the body and be quite disfiguring. I google imaged it, and was concerned by what I saw because none of the photos were captioned to indicate if they were to illustrate typical cases or severe cases. The doctor assured me today that in most cases, a person with NF1 is not easily identifiable as having a medical condition.

All this said, we are most likely going to go ahead with trying to adopt J. I am going to call the agency tomorrow to see what, exactly, we will have to do to prepare our homestudy. We're hoping we'll be able to streamline the process, since they have all our information and we're still being actively monitored by them for post-placement purposes. We're not going to commit until the doctor can review some of the pictures and videos we took of J while we were in Peru (we have to snail-mail them). They are more recent than what was in the file, and he's going to see if they give more insight into J's language delay, growth, and/or prognosis. Still, I'm pretty sure we're going to try to do this!

wille2b · January 2011

yayy!! i am sooo happy, I wanted to make sure I heard something before I went to bed! And even more amazed with you! Its such a huge step to take and I will be thinking of you the whole way! I cant wait to hear what is involved in the process! J is so lucky that someone loves him so much who barely knows him!

What an awsome way to end the day and start a new journey

CaptainSerious · January 2011

Well, no decisions have been made yet. We're just leaning towards "yes."

And, even if we try, the process is likely to take at least a year, and the earliest we'd be allowed to be placed is six months from now (1 year minimum between placements). It's possible J could be adopted between now and then, and there's nothing we could do. So, this is very much a faith in God's plan kind of situation. Just wish us all luck, including J, that the best thing for all of us happens.

farmweddinggirl · January 2011

CaptainS, how exciting! I'm so glad the doctor was encouraging.

Honeydew1894 · January 2011

I am happy that you got pretty good news. I hope, that if it is meant to be, that it will be a smooth road for you.

CaptainSerious · January 2011

Thank you, everyone. I really means a lot to me to have all your support and well wishes.

smith486 · January 2011

Honeydew1894:
I am happy that you got pretty good news. I hope, that if it is meant to be, that it will be a smooth road for you.

This!!~

koda927 · January 2011

So happy the doctor gave you encouraging words. Like others said I hope it all works out for you.

GulfCoaster · January 2011

So glad to hear the doctor was encouraging. I hope it all works out.

swanck · January 2011

That's really great news!!

Praying that it all unfolds for you well!

silliestbunny · January 2011

Happy to hear the update.... and thanks for sharing that it's NF.
We looked closely at a NF case a few months ago (BM had NF and a strong family history as well as one of her three kids had NF). We seriously considered it but ended up not pursuing for reasons other than NF. You definitely know more about the disease than I do but the things that would concern us seem like they would already have surfaced with J (like you said).

How old is J? I missed that somewhere.

Continued prayers (and excitement!).

futuremrsofficer · January 2011

I'm glad to hear that there is good news. Good luck with everything, I really hope everything works out!

CaptainSerious · January 2011

Thanks, everyone.

J is 4, and the next few years would give us a much better guess of how severe his symptoms would be, but we do have some hopeful indicators.

fallsbride · January 2011

As moms we will always have unconditional love for our children and this is a prime example of the pure love of a mother. Having children is so wonderful but such a huge job. No matter (as you said) how our children our brought into our lives there are always "unknowns". I know that your child will grow up loved and I also hope that good health is also apart of his life. Glad there is good news to share!