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afha · This is the Alternating Hemiplegia of Childhood Mailing list for all families affected by this disorder. (http://www.afha.org)
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Re: [ahc] New member   Message List  
Reply | Forward Message #4240 of 7583 |
Re: [ahc] New member/good to hear from you!

Hi all, this is Dave Ashley's dad just thought Id give an update. She is
going to be 17 in Jan, hard to believe,however,she is now ending her first year
at the Woods School in langhorn Pa where she is a full time resident and yes
she love it. She is still Ash having behavior issues and limp spell but the
school handles her in stride and are on top of everything, they are a full
care and education school with a knowledgeable staff. She has matured, is 5 ft
95 lbs and all teenager, dresses herself, takes care of her room for the most
part still cant tie the shoes but getting there, has a hard time in class
doing her work but really makes the effort. My wife and I are now divorced and
she has taken it very well with no bad effects emotionally. Her spells are the
same no pattern, the time in-between changes some hard ones some not. The
key for any one with special kids is acceptance, being her looking at her
knowing what it must be like to be her. Any accomplishment that she does is a
gift. Although she will always be this way, I always have hope that there is
something around the corner that will change this but if not, she has changed
me
for the better. Being with her sitting watching a movie eating popcorn is a
great thing. The school has an open door policy, I go any time with out
notice, have lunch snack, tuck her in at times, have her for the weekend and so
on,
the school is about 15 min from my condo and 30 min from my X..Ash is now
finally a fully developed woman, got her period about 8 months ago and is doing
fine with it all and has help if needed but keeps it to herself, its cute. So
that's the deal, if anyone has questions about anything feel free to ask and
lets all help each other---God bless and as always we pray for
everyone---Dave and Ashley


[Non-text portions of this message have been removed]




Fri Nov 11, 2005 1:56 pm

MANEEXP@...
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Message #4240 of 7583 |
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Hi, Karen We are in Kansas City, MO...are you the family that also sees Dr Torkelson at Children's Mercy? We also met at the AHC meeting in Chicago.... Take...
Jennifer
jejeant
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Nov 10, 2005
9:54 pm

... Torkelson ... <> Hi, Jennifer ... <.> ... have a ... age. ... Topeka ... Ashley, ... who...
ashleynichole1997
ashleynichol...
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Nov 11, 2005
1:08 am

Hi Karen and Steve Our daughter is 6yrs old and has AHC and seizures and her speech is significantly delayed. Addie did have behaviors act up particularly at...
popcornkcv@...
popcornkcv
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Nov 11, 2005
1:31 pm

... particularly at the end of her ... started. ... was in. Her ... fights with brother. ... summer ... classmates (8 other ... Her teacher's ... schedule and...
ashleynichole1997
ashleynichol...
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Nov 11, 2005
9:50 pm

Hi all, this is Dave Ashley's dad just thought Id give an update. She is going to be 17 in Jan, hard to believe,however,she is now ending her first year at...
MANEEXP@...
Send Email
Nov 11, 2005
2:01 pm

... Dave It always sounds like you have such amazing strength. God bless ashley and your family it sounds like you found something that works for you all....
renny01@...
costedio
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Nov 11, 2005
5:41 pm

Hi Karen and Steve, Just a thought...if you haven't already done this you may want to have Ashley evaluated at some point by a neuropsychologist. The...
popcornkcv@...
popcornkcv
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Nov 12, 2005
2:02 pm

... have Ashley ... eval is just ... in the ... services to help with ... with ... diagnose autism. ... with children ... scripting and ... allow the kids ... ...
ashleynichole1997
ashleynichol...
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Nov 12, 2005
2:45 pm

Addie's little events also involve her mouth alot. She also has had lots of meds without responses for over 2-3 hrs. Docs say they are seizures but it does...
popcornkcv@...
popcornkcv
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Nov 12, 2005
5:56 pm

Hi Karen (KS) and Carol (CA), I was hoping to talk with you and compare notes about our children with AHC and seizures. It was clear to me at the BOston mtg...
popcornkcv@...
popcornkcv
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Nov 11, 2005
5:39 pm
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