Thursday, October 11, 2012

I Want to be... and a Knee Update

Hanging out with Claire in the bathroom this morning she was telling me about Rapunzel and "climb the hair."  It took a little while but I realized that she was talking about our shower curtain; it is a cityscape with the Empire State Building on it.  “Oh, you think that looks like Rapunzel's castle?”  "Yes, long hair, climb," she pulls at her hair down her back.  "Do you like your hair Claire?"  "Long blond hair," she replies with a beaming expression.

Sometimes a simple story explains Down syndrome the best.  Claire is a little girl.  What little girl doesn't want long hair like Rapunzel?  People with Down syndrome have hopes and dreams, hobbies and even fairy tale wishes just like everyone. 

Claire also wants to be Mary Poppins.
Grammy Klein Made her this awesome dress, hat and bag. 

Knee Update Tuesday we went to the orthopedic specialist and had some more x rays taken of Claire's knee.  The doctor thinks that she strained the tendons that attach to the inside of her knee cap and that is why she is dropping her knee in when she walks and why it pops.  It's still unsettling to hear "I think" from a Doctor,  especially with all the emotional baggage I have with Claire.  She has had some mystery illnesses that Doctors never sorted out (blood in her stool and some kind of allergic reaction); they said "well, she does have Down Syndrome and weird things do happen to these kids."  One Doctor told me that "when It's Down Syndrome it could be anything," like that is supposed to make me feel better? I know it could be anything, can we figure out what it is please?!  So when the Doc for the knee told me to "just come back in two weeks, it should heal up on it's own in five to six weeks," after every Doctor has told me "come back in a week" for the last three weeks and she is sill in pain I said wasn't happy with his prescription and said "well, we have been doing that for three weeks and I am very concerned about the way she is walking (with her knee bent in towards her other knee, not forward, it's ugly) this cannot be good for her hip or ankle.  She has developed bad habits with walking before and she already has week and loose everything.  I wouldn't be so upset if her knee was in Alignment even if it still didn't straighten out all the way." He explained why he didn't want to do a MRI, fair enough, then offered a braise to keep it stable.  Thank you!  We went over to a guy I really like at Thompson's (we have had a lot of orthotics made there) and he measured and special ordering a braise for her tinny knee.  Hopefully it will be in soon. 


  1. I love the Rapunzel story : ) Sounds so much like Ella....Tangled is her FAVORITE movie!!!

    The knee thing....UGH. I hate not having answers. Sometimes, a lot of times, I get the feeling that our kids with Ds get overlooked on things like that just because they have Ds. Drives me crazy! I hope the knee brace makes it feel better and corrects her walking!!! Hugs to Claire!

  2. Oh hope it heals up soon. Yeah I think we know more than doctors most the time. Just pay me the big bucks next time. I'll tell you it's just the Down syndrome :)