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Peroxisomal_Disorders · Family Support for Peroxisomal Disorders
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Messages 1950 - 1979 of 1979   Oldest  |  < Older  |  Newer >  |  Newest
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1950
Oh Carolina. I am at my desk crying. What a beautiful video. Thank you so much for sharing, and thank you for doing so much for our kids. Congratulations on...
Anne Park Hopkins
aphopki
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Nov 9, 2009
1:55 pm
1951
Tears here... Wow very beautiful. God Bless You Everyday! Pam Freeth Wife to Dan, Mother to Matt, Jordan and Angel Olivia (7/29/04 died 12/20/04Zellweger...
Pam Freeth
freeths3
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Nov 9, 2009
2:16 pm
1952
Hi Jim   2 of my 3 IRD kids have Advanced Bionics CI's.    Lizzie was implanted almost 4 years ago (she is now 8 yrs old).  We didn't go in the...
Suzanne Collins
collinskidsird
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Nov 9, 2009
2:48 pm
1953
Jim, Peter has a cochlear implant. Got it about a year ago. His surgery went very well, however, his recovery was not as swift as we would have liked. let me...
Anne Park Hopkins
aphopki
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Nov 9, 2009
2:54 pm
1954
Hi Jim, Sam got his implant when he was 2 ½. We are coming on 5 years ago this week. He was actually the 2nd pbd child that I am aware of that received a ...
Shannon Butalla
dbsamsmom
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Nov 9, 2009
3:49 pm
1955
Love it, love it, love it. Couldn't stop crying. even Taylor was sitting at the computer with tears strolling down her face. Miss you. Shannon...
Shannon Butalla
dbsamsmom
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Nov 9, 2009
3:58 pm
1956
Hi Shannon, We are not attending the conference, however, we are going to go and meet some of the scientists that are attending the conference.  We are...
Jennifer Black
jenniferblac...
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Nov 9, 2009
5:01 pm
1957
Thanks, everyone, for your input. It will be nice to have some people to discuss it with as time goes on. We're really looking forward to this. If everything...
Ciera's Dad
vtshopper
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Nov 9, 2009
5:05 pm
1958
H Shannon, We are meeting with the Seattle Children's cochlear implant team this Thursday. It is our first meeting after submitting our application. I was...
Jennifer Black
jenniferblac...
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Nov 9, 2009
5:16 pm
1959
Jim   I found the best thing the school ever did was have the CI FM System all ready to go as soon as the girls were stimulated.  Its a great tool.   I...
Suzanne Collins
collinskidsird
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Nov 9, 2009
6:09 pm
1960
Jennifer   My thought would be to keep referring back to the fact that this disease is degenerative and that hearing could decrease rapidly.  Because of that...
Suzanne Collins
collinskidsird
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Nov 9, 2009
6:13 pm
1961
Thanks, Heather.  I may take you up on that offer and whenever ya'll are ready for the spa (or Mexico), I'm so there!!  ;-)   Suzanne ... From: Heather...
Suzanne Collins
collinskidsird
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Nov 9, 2009
6:14 pm
1962
Hi all yet again we have been to get the results and there still not back, bit mad as they could have called instead we travelled all the way there to be told...
Rudi Gracie
rudigracie
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Nov 9, 2009
7:22 pm
1963
I agree with everyones sentiment about the video, and sent the link to my family. What a wonderful video. I had a real good cry for the children. Wow. On...
Matt
mfjh100
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Nov 9, 2009
7:38 pm
1964
If it makes you feel any better, we do not know where peter is on the spectrum, and that actually gives us hope. . . thinking of you. AP Anne Park Hopkins ...
Anne Park Hopkins
aphopki
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Nov 9, 2009
7:46 pm
1965
Please help me with any thoughts or ideas so this can be a smooth process for us. Nickolaus will be 3 in July and they want us to start the ball rolling on...
Shawnee
shawneebear1
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Nov 9, 2009
8:35 pm
1966
Hello Everyone. You are all probably wondering what happened to the donation we were going to send to ULF. We are still waiting to hear back from them. I will...
Shawnee
shawneebear1
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Nov 9, 2009
8:37 pm
1967
Sam just got a personal FM that works FABULOUS with the Advanced Bionics Device. Called Phonak Inspiro. Look into it. Shannon...
Shannon Butalla
dbsamsmom
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Nov 9, 2009
8:41 pm
1968
Very valid points, Matt. I'm glad you brought up Peter, as I know AP posted that he was taking a break from using his CI and I wondered how that was going. ...
Shannon Butalla
dbsamsmom
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Nov 9, 2009
9:00 pm
1969
I just received this in my inbox. I guess it makes sense why the new Phonak Inspiro works seamlessly with Sam's Advanced Bionics device. Our audiologist said...
Shannon Butalla
dbsamsmom
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Nov 9, 2009
9:05 pm
1970
One advice that I do have when you embark upon the Cochlear Implant journey. Do not get so caught up in the "device decision". . . meet with reps from each...
Anne Park Hopkins
aphopki
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Nov 9, 2009
9:14 pm
1971
I also agree that Matt's points are very valid.  Other than the first day of Lizzie being stimulated, I saw nothing change for over a year.  She didn't like...
Suzanne Collins
collinskidsird
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Nov 9, 2009
9:26 pm
1972
1. Look for a classroom that is immersed in total communication 2. Insist Nicholas has a one-on-one intervener or paraprofessional. 3....
Shannon Butalla
dbsamsmom
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Nov 9, 2009
9:32 pm
1973
Shannon,   You captured all of my thoughts in a very "organized" manner...  ;-)   Suzanne ... From: Shannon Butalla <sbutalla@...> Subject: RE:...
Suzanne Collins
collinskidsird
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Nov 9, 2009
10:09 pm
1974
Thanks, I’m glad you agree, Suzanne. J Shannon Thanks, I’m glad you agree, Suzanne.   J Shannon...
Shannon Butalla
dbsamsmom
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Nov 9, 2009
10:13 pm
1975
Shannon, Thank you so much for all of this information. I am just going to start hitting this head on. I don't want to miss anything for Nickolaus. I want him...
shawnee bear
shawneebear1
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Nov 9, 2009
10:32 pm
1976
I'm in for a spa weekend or Mexico... ________________________________ From: Suzanne Collins <collinskidsird@...> To:...
Jennifer Black
jenniferblac...
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Nov 10, 2009
3:43 am
1977
I'm always game for a week in Mexico. Heather knows me too well. However, I skip the margaritas and go straight for the Bushwackers or Mexican Sangria ...
Shannon Butalla
dbsamsmom
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Nov 10, 2009
4:17 am
1978
Matt, I really appreciate your input. Though we hope things will go well, it's good to be aware that they could be a struggle, as well. Thanks, Jim     ...
Jim C
vtshopper
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Nov 10, 2009
2:04 pm
1979
Anne, Our doctor was really good about this. He showed us the devices and said they were all good, and to just chose the one that will work best for you. We...
Jenn Ch
jenncharb
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Nov 10, 2009
3:46 pm
Messages 1950 - 1979 of 1979   Oldest  |  < Older  |  Newer >  |  Newest
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