Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 I am so happy for Aubrie, What freedom. She will bounce back so fast!! Lynn cast off Aubrie had her spica cast removed yesterday! What a day! The aid went with us for instructions in the exercises. She has muscle strengthening and range of motion exercises for 2 weeks, then we go back to stand for the first time, get a walker, and further instructions. She has a wedge/pillow that straps onto her legs to keep them in the comfortable position of the cast and to keep them protected during sleep and whenever she wants it during the day. She can sit on the potty and in her desk chair, if placed there, for as long as she feels comfortable. She had a bath last night. She gets to wear clothes now. She's so thrilled! I was surprised at how weak her legs and torso are, but also at how fast she is gaining strength. Every hour there is improvement. And what a wonderful thing to sleep through the night without having to wake every 3 hours to change her diaper and reposition her. But, of course, my bladder is still on schedule and woke me at 1 and 4 to go potty -- gee thanks. Big weekend here with school open house tonight (she's been looking forward to it for over a week) and our local Fall Festival all weekend. Grandma is coming down to see her newly released legs and bringing my aunt with her. I'm sure we'll have lots of fun but little rest. Michele W Aubrie's mom 6 yrs 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 September 10, 2004 Report Share Posted September 10, 2004 Michele (and Aubrey), YIPPEE! how wonderful that the cast is off. Now life can resume some sense of normalcy (for whatever that is for most of you!!) again. Michele, I can't wait to see the pics you have sent!!! is on the lookout for the CD's arrival and as soon as he gets it he will copy and send to me to share with our team. I have told them they are in for a treat!! Enjoy your weekend--sounds like lots of fun things!! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 pam.ryan@... wrote: > I have told them they are in for a treat!! I hope you're ready. The pix are cute, of course, but the paperwork -- argh! I know you've been through it all before, but gee whiz, I took me a week just to get it all scanned! I have a bin of papers that would've had to have been boxed up to ship. Of course, some is repetitive or not applicable to what you need. Anyway, I hope you are able to get the jist of " Aubrie " in preparation of her arrival. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 Wonderful fabulous news. She must feel relieved to have that off. Is she is any discomfort from not having moved her legs for so long? Congratulations on making it through that. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 Bonnie- No discomfort -- but then she doesn't seem to have an understanding of pain. She never tells me when something hurts -- even shoes too tight, a splinter, etc. She's doing really well. Just seems cautious of protecting her legs and is very weak and floppy. Michele W Quote Link to comment Share on other sites More sharing options...
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