Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

She's uniquely complex!

Posted by on Feb. 6, 2016 at 8:04 PM
  • 8 Replies
2 moms liked this

Lina had her appt with Genetics on Thursday. I was hoping that in the last 4 years that there would've been some new information about what the chromosomes and genes do that she has abnormalities with. There isn't any :(

But the research goes on he said. He wants to see her again in 2 years if I want to continue. I said yes because I'm hoping that with the continuing research there might be information. Any info helps even when you know nothing can change things it's just some more info to help understand what is going on. 

We talked about everything that is going on with her since he saw her last and some of the new things that aren't dx'd yet but she is being tested for. He asked if she's ever had and IQ test. I told him no. He said that he doesn't hold a lot in those but for the record it would be good to have in there. He said that from what I was able to tell him about her school and IEP that she is still at about a 50 IQ which is what he estimated when he first saw her when she was about 5. 

He said I was doing a great job with her and he could tell because she was a very happy and basically healthy child. That made me feel really good. 

He told me that she was a "uniquely complex" child medically. So now it is official Lina is Uniquely Complex! lol!!

by on Feb. 6, 2016 at 8:04 PM
Add your quick reply below:
You must be a member to reply to this post.
Replies (1-8):
rebecca_new_mom
by Silver Member on Feb. 6, 2016 at 9:11 PM
And You are her equally Unique and Amazing Mother!!!
Linagma03
by Platinum Member on Feb. 6, 2016 at 9:20 PM
1 mom liked this

Thanks. I think ALL of us are!

It really made me feel good to hear that. I'd been having a funky few weeks so that was a real pick me up. 

Quoting rebecca_new_mom: And You are her equally Unique and Amazing Mother!!!


jjamom
by Michele on Feb. 7, 2016 at 3:01 PM
I'm so glad you got such great feedback. I agree with you, I would continue on with the appts in hopes that you'll learn more to help Lina, and that maybe Lina could help others if anyone else ever comes up with the same chromosomal makeup as she has!
MamaLauri
by Silver Member on Feb. 7, 2016 at 5:51 PM

You are doing a really great job!

golfqueen123
by Silver Member on Feb. 7, 2016 at 10:53 PM

Thats great!! Keep up the awesome job that you do!!

Linagma03
by Platinum Member on Feb. 8, 2016 at 1:01 AM
1 mom liked this

It was great to hear him say that because I really did need a pick me up. I agree too with continuing to see him. I really am hoping that one day they will know what the genes do and when they do them. Yes her info being on record could help someone else later. I know I would've loved to have known that MAYBE this or this could happen. 

Quoting jjamom: I'm so glad you got such great feedback. I agree with you, I would continue on with the appts in hopes that you'll learn more to help Lina, and that maybe Lina could help others if anyone else ever comes up with the same chromosomal makeup as she has!


Linagma03
by Platinum Member on Feb. 8, 2016 at 1:03 AM

Thanks. It was just strange because no doctor has ever said that to me. I really needed it that day it really helped. lol!

Quoting MamaLauri:

You are doing a really great job!


Linagma03
by Platinum Member on Feb. 8, 2016 at 1:04 AM
1 mom liked this

Thanks. 

Quoting golfqueen123:

Thats great!! Keep up the awesome job that you do!!


Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)