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Update from Seattle!! :)

Posted by on Nov. 4, 2014 at 1:00 AM
  • 12 Replies

Sorry this is so late!! Anyway the trip was fantastic and I wish we didn't have to leave!! We left it up there! We went to the doctors and spent over 3 hours talking to him. Turns out Elena has a Tubulin disorder. Its when the proteins in her cells didn't distribute properly when I was pregnant and gave her the polymicrogyria. Her brain scans were interesting to look through and very thankful to find someone who was willing to do so. Her future looks brighter! He won't be surprised if she'll walk one day!! She also has the potential to regain her vision too! (She has CMV where she can only see light and shadows..) She could very well live into her 30's which is great news! He is very surprised she can eat by mouth as well. The only down side is her epilepsy will be a very hard thing to try and control, this we knew already. We also need to monitor her for pneumonia. 

All in all it was a very good appointment. I feel confident he knew what he was talking about and we will keep on doing what we've been and we'll be okay! :) 



by on Nov. 4, 2014 at 1:00 AM
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Replies (1-10):
mandee1503
by Amanda on Nov. 4, 2014 at 1:20 AM
That's great to hear. Jacob has pmg too.
Cindy18
by on Nov. 4, 2014 at 5:57 AM
1 mom liked this

Great news!!! I'm so glad you got to a professional you have confidence in!

darbyakeep45
by Darby on Nov. 4, 2014 at 6:10 AM
1 mom liked this

Thanks for the update...so glad things are looking up and you were able to go there!  Hugs!

Momof4AEMW
by Gold Member on Nov. 4, 2014 at 7:10 AM
1 mom liked this

That's great news.  Sounds like a successful trip!

jjamom
by Michele on Nov. 4, 2014 at 8:13 AM
1 mom liked this
I'm so glad it was a meaningful trip and you got to see someone who took the time to go over things with you and give you confidence and hope!
Elyssa414
by Elyssa on Nov. 4, 2014 at 8:18 AM
So glad to hear. Can I ask who you saw at SCH? (Two of my kids are regulars there) :)
MamaLauri
by Silver Member on Nov. 4, 2014 at 8:58 AM

I am so happy the doctor could answer your questions, and your family had a fantastic time! Isn't also great to be back home?

letstalk747
by Ruby Member on Nov. 4, 2014 at 2:01 PM

 good

MauiStylinMommy
by Member on Nov. 4, 2014 at 3:55 PM
Elena has bilateral asymmetric PMG. I bet Jacob is an awesome kid like Elena! :)

Quoting mandee1503: That's great to hear. Jacob has pmg too.
MauiStylinMommy
by Member on Nov. 4, 2014 at 3:57 PM
We saw Dr Dobyns. He was awesome! :)

Quoting Elyssa414: So glad to hear. Can I ask who you saw at SCH? (Two of my kids are regulars there) :)
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