Guest guest Posted December 2, 2003 Report Share Posted December 2, 2003 I am at momonamission@.... Michele michele michele, what is your private e-mail? I wanted to send you something, but I couldn't find your address--not sure why maybe I jsut missed it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 I remember that now. We may have discussed it before. Rockford is 4 or 5 hours, I think, for us. Do-able, but not my first choice. Chicago is just as far, but my family is there to stay with. Thanks for your experience! I'm sure I'll find something. I just need to keep on it. This is one area that I can't seem to keep in focus long enough to get a handle on. Michele W Michele Hi Michele, We take Karlee to an endo in Rockford. (1 hour away) We see doctors in Madison and at Lutheran General in Parkridge (both 2 hours +) for other CHARGE issues. I was told by someone in a medical field that endo is pretty straight forward and that we didn't need to travel to a far away location. Oor physician is a pediatric endo. We have been happy. Karlee has been on injections for 2 years now and does look age appropriate in stature now. He is watching the puberty issue closely, as Karlee will be 16 next month. Her bone age has to be 13 before the next step of hormones begin. from IL (Karlee 15 years) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Hearing about the positive experiences with CST from so many people has been helpful. I'm feeling torn because I've got conflicting recommendations on the therapist I'd chosen and started with. Her credentials are great and I like her so far, but someone I respect has reservations. It's so expensive and it's far away -- 2 hrs round trip -- that it's such a pain to think about adding to our life. But I also think it could be so helpful. I wish it were an accepted intervention that was covered by insurance. The whole medical system is beginning to really stress me out and p*** me off. Michele W Aubrie's bad day >Ok-- Here's my bad day. I feel like I've had the wind knocked out of me. Stop the world -- Aubrie and I want to get off!! > >We had our check-up at Shriners. We were last there 2 years ago. We're being monitored for scoliosis, kyphosis, and ankle pronation. None of those have been a big issue, just things to watch. Since we were last there, she's been able to pop her hips out of joint in the front (is that anterior or posterior?? I don't know). Anyway-- I've known it's gross and definitely can't be a good thing. Our appt was supposed to be in Nov but kept getting postponed due to conflicts with the dr schedule. > >So... in we go. I'm prepared for x-rays and to convince them that this is a big deal. Only I had no idea how big of a deal. The remedy (if we want her to be able to walk into adulthood) is to cut her leg bones, reattach with plates, and resculpt her hip sockets. Ouch! One week inpatient and 8 weeks in a body cast! Ouch again! She had several xrays today. We'll be going back soon for CT scan to get a good look at those sockets. Then we'll decide for sure on surgery. > >Has anyone had this done? I know there have been other hip surgeries, but they may been different. These are the names of the procedures being proposed: Pemberton osteotomies and proximal femoral varus osteotomies plus capsular tightening. > >In the meantime, we have exercises to strengthen the hip muscles to make recovery that much quicker. And I talked to OT about the handwriting/keyboarding issue and feel much better about that. > >So after our great day at KNOZ-TV, we finished the week with this. By next week, I'll know if she'll also be having surgery to repair her palate. Then next month we have the initial consult re: ear reconstruction. I don't know if we can deal with all of this. How do our kids go on growing and learning when they are stopped by all of these stupid obstacles!! In fact, that's the other thing I have to do, but now I don't know if I can add it to our plate -- we haven't seen endo yet! Plus I was going to start her with a new cranial sacral therapist next week! That may have to wait... > >Thanks for listening. I look forward to hearing about others who have had the same thing. > >Michele W >mom to Aubrie (6 yrs) CHaRgE and (12 yrs) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 ty michelle for replying and sharing ur experience to and it does help and its nice that u try and help relate to what goes on....i dont like swimming either coz i cant hear mostly or see no one understnadh ow frustrating it is bugt i went to teh poool with my firends a coupel weeks ago and showed them how much it annoyed me so they dont ask me anymjore finally lol.. hey..are u coming to thecharge conference next year? Belinda > Belinda- > I used to feel the same way when I went to the swimming pool without my contact lenses. You can imagine how self-conscious I felt anyway as a teen. Without my contacts I could barely see. Could never recognize people's faces til they were right there. I'm sure folks thought I was very unfriendly. I wasn't as bad as not recognizing them when I was actually talking to them, so it's not exactly what you're dealing with. But it's the closest I can come to relating. I can't imagine feeling that way all the time. It bothered me enough just those few instances in the summer! Maybe it's why I never really liked to swim. > > Don't feel embarrased about telling people what's going on when you realize that you've made a mistake. It's going to be better to tell them the truth than to shy away. > > I really am glad you vent here so that I can get a glimpse into the things Aubrie may deal with in the future. Thanks also for sharing your trampoline experience! I will ask Aubrie's professionals who know the specifics of her situation to see if it will be good for her too. > > Michele W > Aubrie's mom 6 yrs > > sometimes i wish i had " im blind " stamped on my head grrr > > > sorry to post here..i mjm jsut frustraetd....this girl who started > doing calisthenics with me this year i saw at a shop > tonight...anyway it took me a few minutes into a convo to realise it > was her i originally thought it was my sisters friend....i was like > oooh ur elise i ditn realise it was u and nwo im worried she thinks > im dumb and i feel really bad that i didnt realise it was her coz i > dotn think she knows how blind i am.....sorry just had to vent that > out i guess... > > Belinda > > > > 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@c... 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@c... Thank you! > > > > > ------------------------------------------------------------------- ----------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 We plan to attend every conference! Will you be in Miami?? Michele W sometimes i wish i had " im blind " stamped on my head grrr > > > sorry to post here..i mjm jsut frustraetd....this girl who started > doing calisthenics with me this year i saw at a shop > tonight...anyway it took me a few minutes into a convo to realise it > was her i originally thought it was my sisters friend....i was like > oooh ur elise i ditn realise it was u and nwo im worried she thinks > im dumb and i feel really bad that i didnt realise it was her coz i > dotn think she knows how blind i am.....sorry just had to vent that > out i guess... > > Belinda > > > > 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@c... 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@c... Thank you! > > > > > ------------------------------------------------------------------- ----------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 yeah i really want to come....i think im financially about half way there...lol Belinda > > Belinda- > > I used to feel the same way when I went to the swimming pool > without my contact lenses. You can imagine how self-conscious I > felt anyway as a teen. Without my contacts I could barely see. > Could never recognize people's faces til they were right there. I'm > sure folks thought I was very unfriendly. I wasn't as bad as not > recognizing them when I was actually talking to them, so it's not > exactly what you're dealing with. But it's the closest I can come > to relating. I can't imagine feeling that way all the time. It > bothered me enough just those few instances in the summer! Maybe > it's why I never really liked to swim. > > > > Don't feel embarrased about telling people what's going on when > you realize that you've made a mistake. It's going to be better to > tell them the truth than to shy away. > > > > I really am glad you vent here so that I can get a glimpse into > the things Aubrie may deal with in the future. Thanks also for > sharing your trampoline experience! I will ask Aubrie's > professionals who know the specifics of her situation to see if it > will be good for her too. > > > > Michele W > > Aubrie's mom 6 yrs > > > > sometimes i wish i had " im blind " stamped on > my head grrr > > > > > > sorry to post here..i mjm jsut frustraetd....this girl who > started > > doing calisthenics with me this year i saw at a shop > > tonight...anyway it took me a few minutes into a convo to > realise it > > was her i originally thought it was my sisters friend....i was > like > > oooh ur elise i ditn realise it was u and nwo im worried she > thinks > > im dumb and i feel really bad that i didnt realise it was her > coz i > > dotn think she knows how blind i am.....sorry just had to vent > that > > out i guess... > > > > Belinda > > > > > > > > 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@c... 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@c... Thank you! > > > > > > > > > > --------------------------------------------------------------- ---- > ----------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Good for you! Keep working at it -- we'd all love to meet you! Michele Re: Michele yeah i really want to come....i think im financially about half way there...lol Belinda > We plan to attend every conference! Will you be in Miami?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Good for you! Keep working at it -- we'd all love to meet you! Michele Re: Michele yeah i really want to come....i think im financially about half way there...lol Belinda > We plan to attend every conference! Will you be in Miami?? Quote Link to comment Share on other sites More sharing options...
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