As many know, next years Arthrogryposis Multiplex Congenita Support, Inc convention is being held in Philadelphia, PA. Just released...........the dates...
I want to talk specifically to people that have had this surgery, or have had their children have this surgery. I want the good, the bad the ugly. I also want...
Hi! We're just about to have the surgery for our son. He's scheduled for Dec. 12th. Jake also has a g-tube that we really haven't had too many issues with....
I will be very curious how it goes, complications afterwards, pain involved.... and if I can find teens or young adults or heck anyone older that has done it...
There's a family where we go for Speech Therapy who had great success - meaning decannulation - after the surgery. That's what we're hoping for! Betsy On Wed,...
So Jake has the trach? From what I have read it works wonders on that. ... From: Betsy Gates-Ehlers To: avenues2@yahoogroups.com Sent: Wednesday, November 26,...
We have just adopted a little girl that has Arthrogryposis. Is there anyone out there that can help us get started in the right direction to seek therapy for...
Welcome Becky Congratulations on the adoption of your new daughter! The only rule this group has is that you post any question you want. No subject is...
Denise Patterson
jrtowner2008@...
Dec 2, 2008 3:05 pm
2799
i realize this message is old so I don't know if you've gone through with the frame yet or not but thought I'd put my experience out there. I am currently in...
Thank you Denise, Can you put me in contact with the childrens group? Thank you, Becky ... rule this group has is that you post any question you want. No ...
Hey there I will do a brief intro since it has been years since I have been on here. I am Dee Dee mom to Elijah who is now six years old and has Escobar...
Hi Dee Dee, Have you told his aide, teacher, etc your thoughts on the wheelchair? They might not totally understand his diagnosis and think it is helping him...
MARK & MARY HEINEN
mmajch94@...
Dec 16, 2008 3:59 am
2803
My son is 10 years old and uses a wheelchair at school as well as everywhere else but in our home. At first I had the same feelings as you but (how do I say...
opppppppps the other one send before I finished.... Just because your son wants to use it now don't mean he always will...My sons friend in school used a chair...
Could you get a letter from his doctor or therapist stressing his need to exercise his limbs? With them using a wheelchair in a non-emergency situation they...
Denise Patterson
jrtowner2008@...
Dec 16, 2008 12:37 pm
2806
We've had similar problems with our schools. Our son is 11 and will be entering middle school next year. In key ways, his situation matches your experience...
Gail, I cant believe Alec is 11!! OMY! We NEED to get together soon! Email me ok?! ok, am I reading right here, Alec DOES NOT want a wheelchair & the school...
Yes, Alec doesn't feel a wheelchair is necessary for school and does not want one (unless it's for a field trip or something where we don't know what we're...
Mary, yeah we have had IEP meetings about his goals and the wheelchair has been brought up. He actually has a special chair in his classroom that helps him to...
Traci, I guess maybe that it is that I just am not dealing with this part of it as well as I thought I would... When Elijah was born it was the best day of my...
Gail, WOW!!!!!!!! Your situation really does mirror mine! It is just so darn aggravating because when we are out and about at the zoo or a museum Elijah walks...
Regarding fire drills and IEP's. The way we have Juliet's IEP set up is that if there is a fire drill or fire emergency it makes sense for her to walk if she...
MARK & MARY HEINEN
mmajch94@...
Dec 16, 2008 7:17 pm
2813
Gail, Just wanted to throw in my two cents on this. I can see why you are so frustrated. If you have a letter from the doctor saying how your son should...
I would like to talk to a female about personal stuff involving my young daughter with AMC. I don't want to embarrass her, so please email me privately at...
Help!! I am looking for an overnight camp to send my 8 year old son to this summer. I would like to send him to a camp for a 1 week or 2 week session. Does...
Where do you live Lisa? Masha attended a week long camp back when she was 7, 8 and 9 and she loved it a great deal. ... [Non-text portions of this message...
When I was a kid and I still go there as an adult, was a Easter Seals Camp. If you go to the National Easter Seal Society Website and type in your state, it...
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