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Old 09-27-2014, 10:16 PM   #11
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Re: Not sure if anyone remembers my thread about my niece. Here is an update though.

Her surgery is scheduled for next week. Not sure how they are doing it. I know I was told the first day they take the trach out and put a band aide over the hole in her neck. Then they monitor her overnight. If all goes well then they close up the hole. Now what we are not sure of is if they go inside and close up inside her neck or if it is just the outside hole that gets stitched up. Anyway after that she stays in one more night for monitoring(makes me think just the outside gets closed). If all goes well she then gets to go home. Pretty noninvasive it sounds like to me.

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Old 09-27-2014, 11:10 PM   #12
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Re: Not sure if anyone remembers my thread about my niece. Here is an update though.

what an amazing little miracle! Sounds like she brings pure joy to the family. I'm glad she is doing so well. Thanks for sharing.
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Old 11-30-2014, 09:02 PM   #13
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Re: Not sure if anyone remembers my thread about my niece. Here is an update though.

I remember her! So glad she's thriving!
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Old 11-30-2014, 09:34 PM   #14
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Re: Not sure if anyone remembers my thread about my niece. Here is an update though.

Her trach is now out. To our surprise they left the opening to close on it's own. It hasn't done so due to her blowing bubbles out her hole and the pressure of sneezing and coughing. Thursday the doctors are going to go ahead and stitch it closed.

They, my sister and niece, just got back from Maryland. They went for some pretty in depth testing and research. My sister was told, except for physiological abnormalities, my niece is normal. Due to the amount of cranial surgeries and the pressure on her brain preceding her last cranial surgery they had fully expected her to have developmental delays. Not only does she not have any delays she is ahead in some areas.

Still no idea what her syndrome is though. It might be months if not years before they know, if they ever do find out. In the meantime my sister said the Maryland doctors gave her a lot of information that helps her better understand the issues she has and how to help her.

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Old 11-30-2014, 09:38 PM   #15
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Re: Not sure if anyone remembers my thread about my niece. Here is an update though.

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Her teach is now out. They, my sister and niece, just got back from Maryland. They went for some pretty in depth testing and research. My sister was told, except for physiological abnormalities, my niece is normal. Due to the amount of cranial surgeries and the pressure on her brain preceding her last cranial surgery they had fully expected her to have developmental delays. Not only does she not have any delays she is ahead in some areas.

Yay! That is a GREAT update! I've been thinking of her now and then, but didn't want to nosy and ask. That is wonderful news!
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Old 11-30-2014, 09:46 PM   #16
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Re: Not sure if anyone remembers my thread about my niece. Here is an update though.

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Yay! That is a GREAT update! I've been thinking of her now and then, but didn't want to nosy and ask. That is wonderful news!
My sister said she had a blast showing off for the doctors so they were able to see how well she was progressing. She will be 3 in a couple months and is quite the chatter box and as sassy as can be.

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Old 11-30-2014, 09:49 PM   #17
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Re: Not sure if anyone remembers my thread about my niece. Here is an update though.

A really cool thing about the trip, it was all paid for by those doing the research. Plane trip and place to stay.
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Old 11-30-2014, 10:06 PM   #18
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Re: Not sure if anyone remembers my thread about my niece. Here is an update though.

That is awesome!!!
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Old 12-01-2014, 01:21 AM   #19
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Re: Not sure if anyone remembers my thread about my niece. Here is an update though.

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A really cool thing about the trip, it was all paid for by those doing the research. Plane trip and place to stay.

What a blessing all around! And it's nice to hear she's a chatter box. When I read stories like this, it touches my heart. One of my kids was monitored during pregnancy. Against all odds, everything is okay. So, it really does touch me to know she's thriving.
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Old 12-01-2014, 08:16 AM   #20
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Re: Not sure if anyone remembers my thread about my niece. Here is an update though.

Wow- congrats. What a wonderful 'ending.' Well, beginning more like, right?
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