Goodness, you have alot on your plate! Glad the surgery has gone well for your other daughter, & look forward to hearing how your appointment goes with Dr Hepworth’s team on the 9th 
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@Rosa! I’m so glad you were able to get an appointment w/ Dr. Hepworth’s nurse (Sarah or Alison?) for your daughter so soon (or perhaps you’ve waited a while for that?). If you haven’t made an appt. w/ Dr. Hepworth yet, do it while you’re in the office on 1/9. That way you’ll finally get to see him, even if it’s a ways off.
I’m glad your daughter’s TC release went well, & her recovery is progressing w/o complications. That’s great news! I’m sorry she has so many physical challenges as such a young age. Hopefully bit by bit they can each be resolved so she can live more fully. 
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This appointment is with Alison. I wonder if anyone knows what to expect from a nurse visit. Will she be able to look at the CTA and point out the trouble spots? Is she able to make recommendations or give medical advice? I am for sure hoping she can give information as to what all scans the dr may still need, including the codes, so we can move forward.
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Hopefully others with experience of seeing her will chip in, but from what I’ve read on the forum, Dr Hepworth’s NP is extremely knowledgeable & will be able to talk you through your daughter’s CT, & will be able to suggest other testing.
@Rosa - Alison has worked for Dr. Hepworth for 15-16 years & is very knowledgeable about reading CT imaging. She also significantly assists in his surgeries. She should be very helpful & informative for you & your daughter. I can’t speak to whether she can give you the diagnosis/medical codes, but she will be able to advise & refer you if there are other scans your daughter needs.
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Oh! That is even more than we hoped for! Thanks for the reassurance, this is all so new. Now we will for sure be counting the days… We are really appreciating this forum with its information and support. Thanks to all!
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@Rosa thinking of you this week as the days count down to the 9th!! You sure had a long wait but we hope with you that you have a real good visit!
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Thank you! And thanks for adding us onto this thread! I’m struggling to get time to figure this whole thing out and this way the info comes right to our door! I have learned valuable things from this conversation. I hope you hear soon, about an exact surgery date. Waiting can get long, even when we know the dr is moving as fast as he can. I hope I have half an idea what all I should be asking!
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I finally reached out to Kristen and this afternoon heard from her that it may be a few weeks until we hear from the surgery coordinator as they work thru the orders consecutively… so more waiting ahead!
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