We started our day with a second visit with one of the research teams. At this session Emma was assessed by a neurologist who believes she has some residual nerve function, which could strengthen with age. It's nothing dramatic by worldly standards, but for her any expression is huge!
After that I went to a support session for Moms. I learned of some other common aspects of Moebius Syndrome like big dental problems, night terrors and sleep-walking. Things like self-image and sibling issues were no surprise and to some degree universal anyway!
Scott started a different session with Emma but ended up taking her for a walk! She was very well-behaved, but often got a bit restless.
We re-grouped and after connecting with some other people and chatting awhile we caught the end of an opthamology seminar, but didn't understand it as we'd missed the intro!
After lunch we ended up taking a siesta as Emma really needed to get some sleep. I stayed with her in the room while Scott went to a Dad session - apparently what was said there, stays there!!
We then attended a session about body-brushing, and I want to go into some detail about that so I'll make that a seperate posting this week!!
Then it was dinner and the talent show!! I just had to film this - I did not cry!!
After that I went to a support session for Moms. I learned of some other common aspects of Moebius Syndrome like big dental problems, night terrors and sleep-walking. Things like self-image and sibling issues were no surprise and to some degree universal anyway!
Scott started a different session with Emma but ended up taking her for a walk! She was very well-behaved, but often got a bit restless.
We re-grouped and after connecting with some other people and chatting awhile we caught the end of an opthamology seminar, but didn't understand it as we'd missed the intro!
After lunch we ended up taking a siesta as Emma really needed to get some sleep. I stayed with her in the room while Scott went to a Dad session - apparently what was said there, stays there!!
We then attended a session about body-brushing, and I want to go into some detail about that so I'll make that a seperate posting this week!!
Then it was dinner and the talent show!! I just had to film this - I did not cry!!
1 comment:
Hi Debra,Scott,and Emma,
How great it is that you shared with us the events of the conference! And what a beautiful song - When will my reflection show who I am inside. Already the gentleness and softness of Emma is shown with every picture that I have seen of her. I especially love the one that Grandmom Ellen and Granpa Al have hanging in their dining room. All the love and care that you have given Emma comes shining through, Debra and Scott. I can't wait to hold her.
I have been patient, right?!
Love,
Aunt Pat
Next time I see you, you must give me more information and perhaps all the words to that beautiful song.
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