Guest guest Posted July 17, 2004 Report Share Posted July 17, 2004 Sheryl- I guess the best I can do is have options so that she can choose the spot she likes best or move about during the day from spot to spot. Thanks for sharing your experience too- Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2004 Report Share Posted July 17, 2004 Sheryl- I guess the best I can do is have options so that she can choose the spot she likes best or move about during the day from spot to spot. Thanks for sharing your experience too- Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2004 Report Share Posted July 17, 2004 Sheryl- I guess the best I can do is have options so that she can choose the spot she likes best or move about during the day from spot to spot. Thanks for sharing your experience too- Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2004 Report Share Posted July 17, 2004 Ellen- Aubrie will be just discharged at the time of the conference so I don't think I'll be able to make it. I don't anticipate being able to leave her for a full day that early into things. Just in case, where is the conference? I have the dates, but not the location. If she ends up with a prolonged stay or is doing really well at home, perhaps I could run down for a day. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2004 Report Share Posted July 17, 2004 Ellen- Aubrie will be just discharged at the time of the conference so I don't think I'll be able to make it. I don't anticipate being able to leave her for a full day that early into things. Just in case, where is the conference? I have the dates, but not the location. If she ends up with a prolonged stay or is doing really well at home, perhaps I could run down for a day. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2004 Report Share Posted July 17, 2004 Ellen- Aubrie will be just discharged at the time of the conference so I don't think I'll be able to make it. I don't anticipate being able to leave her for a full day that early into things. Just in case, where is the conference? I have the dates, but not the location. If she ends up with a prolonged stay or is doing really well at home, perhaps I could run down for a day. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2004 Report Share Posted July 17, 2004 Michele, We are staying at the Sheraton...so I assume the conference is there also Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Ellen, I will be there---I'll make it a point to look for you. mom to timmy 9 on 8/15, keegan 6, liam 3 1/2 wife to pat Re: postponement > Michele, > was not school age but he had were the post surgery brace at school. > Try as I might they did not get the hang of it until it was time to get the > brace off....While casted did not have a check up...when the cast was > removed..for the first year we went every three months...the following year it was > every 6 months..the following year it went to 1 time a year and at last check > up the doctor said it was in looked great see you in 18 months...as much > as I really like this doctor I was thrilled to hear him say that.I did ask > the school to use the bean bag chair so he could be with his friends at circle > time..the teacher was great she requested the purchase of bean bag chairs for > all the kids so wasn't the only one... > Another thing had minimal PT after surgery...the doctor felt that the > " normal kid activity " was enough therapy... already had so much structured > therapy...he did not run right away but did walk > Are you going to the NTAC/NFADB conference in St. Louis...I'll be there..and > I'm bringing pictures... > Talk to you soon > Ellen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 I think there is more than one Sheraton -- do you know where it's located? Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 michele the sheraton is at 400 south 14th st phone is --hope you can go would be great to see you, but understand copmpletely why you wouldn't. maria Re: postponement > I think there is more than one Sheraton -- do you know where it's located? > > Michele > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 michele the sheraton is at 400 south 14th st phone is --hope you can go would be great to see you, but understand copmpletely why you wouldn't. maria Re: postponement > I think there is more than one Sheraton -- do you know where it's located? > > Michele > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Thanks for the details. You never know how things might change. We had the surgery postponement and I just got a letter in the mail Sat that our Tues dental cleaning at Children's has to be rescheduled. So-- even though we expect to be home by the conference date, who knows? Do you have a cell phone so I could call you if I do get away?? If so, send it to my private email if you want- Michele w momonamission@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Thanks for the details. You never know how things might change. We had the surgery postponement and I just got a letter in the mail Sat that our Tues dental cleaning at Children's has to be rescheduled. So-- even though we expect to be home by the conference date, who knows? Do you have a cell phone so I could call you if I do get away?? If so, send it to my private email if you want- Michele w momonamission@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Hi Michele, What a totally great e-mail address!!! I have not noticed it before, poor attention to detail. Way to go! Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Hi Michele, What a totally great e-mail address!!! I have not noticed it before, poor attention to detail. Way to go! Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Flo- Thanks. I happen to be setting up a new email acct shortly after a very uplifting and empowering inclusion conference! Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Flo- Thanks. I happen to be setting up a new email acct shortly after a very uplifting and empowering inclusion conference! Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 Michele, I'm not really sure if Danny had the hip dysplagia at birth. I know they were watching him closely. It was the neurologist who pushed us to see an orthopedist I think when Danny was about 6 months old. I remember Dr.'s saying that with the low muscle tone and delay in development Danny would be more likely to have hip problems. The pediatric orthopedists did brace Danny betwwen 6-8 months and he was in one type of bracing system or another till they did the surgery at age 4. At first they were hopeful that the bracing would solve the problem but it didn't. I know in his hour out of the brace each day he would constantly try to " W sit. " You are right-Aubrie won't be comfortable in that position after the surgery. R. on 7/16/04 10:27 PM, Michele Westmaas at momonamission@... wrote: > - > Same birthday?? That's pretty cool! > > Did Danny have hip dysplasia at birth or did it develop like Aubrie's? > I really am a bit confused by why it would recur if we are getting > everything lined up. She doesn't get around funny anymore-- in that > frog-legged hop -- she walks. So shouldn't she walk with proper > alignment now? The only that really concerns me is that she sits in a > frog-leg position and rocks and falls asleep. But won't that position > by uncomfortable after the surgery? Her resting position should be > proper afterwards. Well, we'll see. > > Thanks for sharing your experience with beds and chairs. I am not > looking forward to this at all :-) > > Michele W > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 Michele, I'm not really sure if Danny had the hip dysplagia at birth. I know they were watching him closely. It was the neurologist who pushed us to see an orthopedist I think when Danny was about 6 months old. I remember Dr.'s saying that with the low muscle tone and delay in development Danny would be more likely to have hip problems. The pediatric orthopedists did brace Danny betwwen 6-8 months and he was in one type of bracing system or another till they did the surgery at age 4. At first they were hopeful that the bracing would solve the problem but it didn't. I know in his hour out of the brace each day he would constantly try to " W sit. " You are right-Aubrie won't be comfortable in that position after the surgery. R. on 7/16/04 10:27 PM, Michele Westmaas at momonamission@... wrote: > - > Same birthday?? That's pretty cool! > > Did Danny have hip dysplasia at birth or did it develop like Aubrie's? > I really am a bit confused by why it would recur if we are getting > everything lined up. She doesn't get around funny anymore-- in that > frog-legged hop -- she walks. So shouldn't she walk with proper > alignment now? The only that really concerns me is that she sits in a > frog-leg position and rocks and falls asleep. But won't that position > by uncomfortable after the surgery? Her resting position should be > proper afterwards. Well, we'll see. > > Thanks for sharing your experience with beds and chairs. I am not > looking forward to this at all :-) > > Michele W > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 Michele, I'm not really sure if Danny had the hip dysplagia at birth. I know they were watching him closely. It was the neurologist who pushed us to see an orthopedist I think when Danny was about 6 months old. I remember Dr.'s saying that with the low muscle tone and delay in development Danny would be more likely to have hip problems. The pediatric orthopedists did brace Danny betwwen 6-8 months and he was in one type of bracing system or another till they did the surgery at age 4. At first they were hopeful that the bracing would solve the problem but it didn't. I know in his hour out of the brace each day he would constantly try to " W sit. " You are right-Aubrie won't be comfortable in that position after the surgery. R. on 7/16/04 10:27 PM, Michele Westmaas at momonamission@... wrote: > - > Same birthday?? That's pretty cool! > > Did Danny have hip dysplasia at birth or did it develop like Aubrie's? > I really am a bit confused by why it would recur if we are getting > everything lined up. She doesn't get around funny anymore-- in that > frog-legged hop -- she walks. So shouldn't she walk with proper > alignment now? The only that really concerns me is that she sits in a > frog-leg position and rocks and falls asleep. But won't that position > by uncomfortable after the surgery? Her resting position should be > proper afterwards. Well, we'll see. > > Thanks for sharing your experience with beds and chairs. I am not > looking forward to this at all :-) > > Michele W > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
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