So baby robin did WONDERFUL last night. Found out it is her neb treatments making her heart race so bad. AND she started actually eating today! We got good news from PT. Her back and chest are finally coming loose! She still has a tightened scapula which is causing her arms to twist downward, but there is a new body wrap system that they feel will be perfect for her. And if we get the body wrap system...NO MORE nuprine straps! And it will help prevent the scoliosis she will develop if we dont get her straightened out. Opening her chest has made it a lot easier for her to breath, still not a full deep breath but we are getting there! She gets her Walking AFOs on the 23rd and those should help with her torqued legs and balance. Jello Update: he, we did not get such good news about. PT said that his legs have twisted to almost a 40* turn inward, he is following his brothers path. She said to plan on defemeral osteotomy on BOTH legs within the next couple years. They have his legs all taped along with the staps, AFOs, and immobilizers. His tremors have gotten extremely bad and is actually affecting his ability to function so he has been diagnosed with spasticity and put on baclofen. It has been a day to remember. CJ and IzzI continue to do well. Thanks for all your prayers.
Posted on: Wed, 22 Oct 2014 01:57:20 +0000
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