Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 Hello !! So good to hear from you as well!! I've thought of you and your precious little Lily many times since SLC, she has the most beautiful rosey cheeks! Im so glad to hear her scoliosis is responding so well, 11 degrees, thats just so awesome!! Bless her little heart, I too remember them being confident things were improving with her hips, Im sorry that they are not. What are their plans for her hips if you dont mind me asking? One step forward, and a couple back is so acurate. I first heard that from a NICU nurse taking care of her after her first surgery, and it certainly has held true. It is hard to think of your childs health as a marathon instead of a sprint, because you just want to hurry and make it better...but it is a marathon. The long hall saps your strength, so as hard as it can be(especially when there are multiple issues) try to rejoice in every little baby step. Your joy is your stength, dont let the bumpy road steal your joy. I have just had to face one health concern at a time with Eliana, and keep living in the " giggle " moments, rather than the hospital ones. Although it certainly is hard to get a giggle from them when they are there....:-( Eliana did have a surgical release of her tethered cord last time we were there, so this time she is going back to Primary to be evaluated for the complication of " re-tethering " before Shriners will clear her to get her next cast. I'm hopeful because she really seems a lot stronger in her legs, and has not had a return of any symptoms that I can see, but you never know. I'm praying she did not retether since that would mean another spinal cord surgery, hence, more scar tissue, which only raises her chance of complications, and round and round we go. That appt and her next cast will be very telling. Her RVAD and rotation have always been severe and very stubborn, even continuing to progress in the casts, so I'm trying to not have any expectations, but its hard. Anyway hun, thanks for your kind words. Im thrilled the taping has helped, and so glad to have met you the last time we were there. Thanks for the well wishes for this trip, I certainly hope we'll be in SLC the same time as you again someday, it would be great to see the girls play together! Take care and God bless, Quote Link to comment Share on other sites More sharing options...
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